BabyWhispererForums.com
EAT => Food Allergies => Topic started by: sherry lynn on July 07, 2011, 17:14:09 pm
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Note: RAPH diet is the Royal Alfred Prince Hospital elimination diet. For references and cooking I am using the Hospital Handbook (lovingly sent to me by Eloys), The Allergy Friendly Food cookbook (American edition), Fed UP by Sue Dengate and her cookbook.
So I was hoping that I could have a place to talk about this experience and maybe get some help and guidance along the way from people who have gone through similar trials.
This elimination diet (for those who don't know) is taken in steps and starts off as free off: gluten, wheat, egg, soy, dairy, and all nuts but cashews. It is also low in natural food chemicals such as salicylates, amines, and glutamate.
I've taken two weeks to prepare by getting the basic food supplies we will need. Already on day one I am seeing that I should have cooked some stuff ahead of time. But, I'm not sinking yet :)
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So far I have made.
Gluten free waffles. (which I messed up) We used pure maple sugar on top.
I made cashew paste.
And I need to get my behind in the kitchen to make homemade bread because I could not find anything at the store that was free of all the needed things. It would have egg, or soy, etc...
The reason we are doing this diet is DS2 has a known intolerance to soy and milk protein. I am about 95% sure he has an egg intolerance, if not allergy. But have the horrible horrible two nights (in the past we had) I can't bring myself to give him egg. Also DS1 acts soooooo off when he has orange juice. So we suspect a salicylate intolerance.
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Hugs, Sher. It will be a journey with ups and downs. :-) It will be worth the effort, I think. And you will fill your recipe box with lots of homemade things tweaked just for your family. I am always googling for how to make something homemade. It does take some creativity, but I know that you will find a lot of support here. XXXXX
Bread is hard. I couldn't find an edible gf bread. We try to avoid breads with molasses, proprionates, high fructose corn syrup, etc. Needle in a haystack sometimes...
So, you are gluten free first. Lots of hugs for that. I wish you were closer. I have a lot of gluten free stuff in my pantry, and it needs someone to prepare it. :-)
I did read the Artisan Bread in 5 Minutes a Day book; it does give some good recipes for making bread much more quickly than using a bread maker. I don't think that it is gf, though. The bread maker took 4 hours to prep the bread. Artisan Bread in 5 Min a day is much quicker. The library has lots of books on bread, too.
I actually looked and found their website does have some GF recipes, too. Here are some ideas there. http://www.artisanbreadinfive.com/category/gluten-free
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The one thing that has helped me immensely in our homemade cooking is my 11 cup cuisenart food processor. It blends things up for bean burgers, breads (using the dough blade), and chops things in a snap.
I also use it to make this homemade boullion (instead of buying one from the store, which has glutamates and the organic is expensive), and I can customize it how we want it. :-) Avoid problematic veggies as needed; hopefully you can tweak this as the kids pass certain veggies. http://www.101cookbooks.com/archives/homemade-bouillon-recipe.html
I came back to add that I think I have used this boullion recipe, too. http://www.injennieskitchen.com/2010/02/homemade-bouillon.html
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Thanks so much Jean.
We are everything free first :) We are doing the WHOLE mess. Crazy huh.
I am going to need Eloys help on how best to introduce everything back in.
But we have to be free of everything for 3 weeks first. Before we can introduce stuff back in. Well Failsafe recommends three weeks. I don't remember if/what RAPH says about it.
I only have a little Cuisinart processor. It has already been used more today than it has in the last year altogether probably Thanks for the info on the bigger one. So if it was between that and the bread maker you would chose that? I don't even have an immersion blender. :(
I know it's going to get worse before it gets better but. The milk issue wasn't as bad as I thought it was going to be with Lyle. I just kept saying, sorry we don't have anymore then distracted him. We did have to go through this a few times.
Today he had:
gluten free waffle
gluten free oatmeal
GF pretzels
and another bowl of oatmeal.
Water
Mineral water
-He would not try the bread, pears, etc. I'm praying that this gets better with doing the diet. That's one of the reasons I wanted to give it a try.
So, not great nutritionally. But, we only had one "fit" over food today. So that's major.
Jean do you know of a good multi vitamin that is allowed? We only have the drops like you give to babies. Have you ever tried them. OMG they are soooo horrible. I should never have tasted them because I stopped giving them to the kids after that. Even though I have two dif bottles worth about $20 together. I kept telling myself it was for their own good, etc.... but I couldn't bring myself to do it.
Without the milk though I think I have no choice but to do something.
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That is right! I forgot you are free of everything first. We only had the salicylate info when we started, and I followed the food list at www.salicylatesensitivity.com. But then we expanded it to avoid much of what is suggested in Fed Up. I read the RPAH info, but then the allergist said to focus on the histamines rather than restricting his diet even more (as I mentioned in reference to the oral sensitivity). It worked to expand his diet (but still avoid the histamine group), but we still avoid preservatives and additives.
What food group are you going to challenge first?
See if you can get by with the smaller cuisenart. I rarely use my immersion blender now that I have the big food processor. I only use it to blend pumpkin soup in the fall, and it gets the most use when I make soap. ;-) Dh bought us a kitchenaid stand mixer for xmas, and I use that to do a lot of breads/pizza dough/cakes/muffins (just because it is on the counter). With the book Artisan Bread in 5 min a day, you don't even need to kneed the dough (if they pass gluten). Just mix in a big bowl, put in the fridge, and pull out chunks over the next week or two (depending on the recipe), and bake. I am not sure if the gf recipe is similar.
I think you can actually buy both if you want. The problem may be storage. I found the breadmaker at a goodwill type store for $5 (really). (And check craigslist or post a wanted in freecycle; you might be lucky.) It took a lot of space, and it took 4 hours to make bread. With artisan bread recipes, you can bake them in less than an hour and have fresh bread much sooner. If I started at 7, it still wasn't ready for lunch! And I had to be home to take it out or it would brown too much. I haven't checked the artisan bread gf recipe for the length of time, though.
Great job on the milk; we would have WAY more crying.
I will look at multivitamins. I think there was a list on the support thread. I will see if I can find it. XXXXXXXX
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Hey, Sher. I did see some suggestions, but I am not remembering where....I hope it occurs to me soon. Maybe I looked at the suggestions on the main failsafe australia site, and I looked to see if we could get them here.
There were none on the US failsafe list in their section called "files". But there is a page of brands that are ok. TJ is one of the better places to go, as you know. It does have some additional suggestions for recipes. Any luck getting in there? Getting in seems a bit difficult...
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hi sherry,
what's your freezer space like?? we have quite a bit of freezer space so one thing that has really helped me (as K is still pretty much on this diet, tho he has wheat and egg now, and is fine on antioxidants and nitrates, and a small amount of moderate sals) - is to make large batches of vegetable and chicken stock and freeze them. (i froze in one cup amounts when i was bf, now i freeze in ice cube trays so i have smaller amounts to use for K). i also chop and freeze lots of veggies (eg. sliced cabbage, julienne choko, sliced leek, etc etc) so that for quick dinners i can just grab a few handfuls of whatever to throw it all together. some days you just dont have time with two kids!! i also make a batch of pear chutney every 3 to 4 weeks as i use it in lots and lots of things for flavour.
in regards to which challenges to try first, i'd look at dairy or wheat first as if these are tolerated they can stay in the diet for the rest of the challenges. other food challenges need to be tried and then removed again before doing other challenges as the chemicals can interfere with each other. also dairy and wheat if tolerated can rapidly increase the range of options of foods which may make things easier for lyle to handle staying on the diet and give him more variety.
after wheat, i added amines as i didnt think these would be such an issue for K plus it made meat shopping and cooking meat WAY easier and meant he could bananas (even tho he refuses them now ::) ). salicylates as you know failed. i then chose to challenge antioxidants so K could have occasional mcdonalds fries for a treat when H got a meal there, plus for on road trips. i then chose to challenge nitrates (bacon and ham) so that i could add more flavour to meals (depends on your thoughts on the salt content but for me adding flavour for K was more important :-\ ). he has failed proprionates, and he failed glutamates on first challenge but has recently passed that again. at the moment we are back to building salicylate tolerance level and gearing up for a cows milk challenge which i'm pretty sure will fail, tho he is tolerating yoghurt and some cheese now so who knows!
any Qs please ask hun. and lots and lots of hugs, it's not easy but may be just what you and your family need :-* :-* :-*
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Wow Kirry, that was a TON on information, and it has made me realize there is still a TON of stuff I don't know!! The handbook was not NEARLY as informative as all that.
When did you do egg? That is the one I'm super scared about for E.
For Lyle I think he will fail salicylate, and I guess antioxidants (I was going to ask which was the Mc D's challenge.) I remember Elo talking about that one. We have bacon that is nitrate free here. So if Lyle could have that he would be OVER THE MOON. That is his favorite food of all time. That is actually his last meal before the challenge :) I don't know if he will pass Amines because DH is 95% sure he will not pass Amines. Poor DH.
My eczema is really bad right now. And I hope it clears up within the next 3 weeks, so that maybe I can find out what I am reacting to.
Did I mention I'm caffeine free too :) That was easier for me to give up than I thought it would be. I was only having one cup a day, but, I was LOVING that one cup. I think I'm a little more irritable, but not too much. DH is suffering :) Can you believe he is doing this too :) He is actually the one who brought it up this time and said he thought we should do it.
After Lyle's last OJ freak out incident. Poor Lyle :(
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Jean, I think we need to talk about how to really take advantage of the Failsafe group thing. I'm not using it to it's potential. I have the hardest time remember to check my Yahoo account. I don't want to link it to my google account because I get a TON of spam over there.
You know, about the milk, that is kind of funny. On Monday night I ran out of milk, because my milk fiend son drank way more than I had anticipated. I didn't want to buy too much when I went grocery shopping because I knew we were starting the diet on Thur. So we had a big freak out on that night. I mean, big. So Tue morning he was upset again. And I told him we could go to the store to get some. So we did. When we ran out on Wed. I told him. Lyle, that's it. That's all the cow milk we have for a long time. He asked again today, but accepted a "Mommy" glass of water with a straw.
He tried a vanilla cookie today.
Oh, I have a question about spring onion. In the handbook it is listed as high. But, in the cookbook it is listed as low, and is in several of the recipes for week one. One of which we have made???
Jean, DH discussed the oral issue and doing the diet with the OT. I don't know how thoroughly but she said she thought it was a good idea. I'm sure she probably doesn't know to the extend we are going :) but, she knows Lyle's favorite milk is going away. That is what she supported the most. She said she has seen kids improve by going milk free.
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Big hugs sherry - i will follow along as the nutritionist thinks Alex MAY be food sensitive and that is why she dropped most foods between 2 1/2 - 4 years old. i cannot even get her try most of the foods to do a test run and see. most likely sensitivity is to the salicylates (?), but for all we know she may have others (or the issues may be psychological but we cannot distinguish until we see how she reacts to the foods). her diet revolves around carbs and dairy + peanut butter and fish. no fruits except bananas and only certain veg purees that i add to foods, no other proteins until recently tried and accepted some pork into her diet (bacon and sausage only). anyway - will read some of the links and listen in if that is ok - and will of course offer hugs when needed!
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*hugs* Sherry and good luck with the diet. I don't know much about this subject, but I do follow this blog: http://www.domestifluff.com/ that has a lot of nice gluten free recipes. Although it may have the other stuff you're trying to avoid. Anyways, I just wanted to give you my support! :) :)
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Hey Sherry,
Wow, you are brave, but I think you are right to give this a go, given Lyles history I think he night respond really well to even just being preservative and additive free :D
Freezer space is a must, really. I just bought a second freezer last week, I am loving it! as my other freezer was always jam packed. Definantly chop up all the veges finely and freeze then throug together for meals.
If you can buy some rice crumbs then you can fry things - an amine loop hole, as you won't be browning the meat. so you could crumb chicken and fish. You can also meake meat and vege patties -(I make many variations of these still, my tow main ingredients are cooked rice and mince, then chopped cooked leek for flavour, rice crumbs, egg replacer, and chopped or pureed steamed allowed veg. Swede adds sweetness, potato adds bulk, finely chopped celery and then pan fried lightly add also of flavour too.) Celery will become your friend. if Lyle won't meat them at least they would be yummy for you and DH.
Unfortunately the book does not cover the food challenge part. I have the food challenge protocal here that I can scan and send you it takes you through all the food challenges. But first, its best to focus on getting to a baseline. I thini it will be really important to keep a food diary and behaviour dairy, and to familiarise with that you think the symptoms are for the boys so you can see if they are subsiding after three weeks. It is pretty tricky to know if you have reached "baseline".
Does Lyle like mashed potato? You can hide other veges in that if possible.
I guess you need to think about how to get proteins into him and the veges into him, in a form that he can palette.
His behaviour mgiht be worse fir the first week or two as there is a known withdrawl phase as the body cleanses from the chemicals in the previous diet.
DO you still have the failsafe booklet with recipes - 10 page one?
the failsafe group is fantastic I couldn't have done it without it really and they pass on really good recipes, other than the books.
Asfor the sprin onion - the shallots are ok - they are the (long green stalks with white at the bottom. The spring onions aren't - the ones that have little mini onions at the bottom - they are really high sals. I hope I have used the right names - anyway I hope you KWIM!?
Deb I if you can get your hands on preservative free bacon and ham that might be of use - we have access to it here at the organic farmers market. In Europe, most of the meats are smoked with salt only and no other additives, but here that is not the case >:( The nitrate preservatives react with the amines in the meats to form nitramines and these are known carcinogens and linked to certain types of cancers. I can't bring myself to give deli meats to the family anymore, only eat preservative free bacon now on occassion.
Best of luck, Sher, it is tough and the constant cooking is very tiring. Try to make as many things in bulk as you can and freeze.
Does he eat chicken at all? I have some good recipes for chicken.
If you can make a batch of stock and freeze into portions this can be your base for making sauces and soups.
There are LOADS of things you can do with pears - pear crumble using gluten free flour and white sugar and dairy free margarine is my favourite. :)
pure maple syrup is allowed!! It is a life saver!!!!!!!!!
If you can find gee, i would highly recommend it. I use it for frying and for adding flavour to cooked foods for Kai, it really it wonderful and it is a powerhouse packed full of vitmains and essential fatty acids. It wil be hard to get good fatty acids from this diet - gee is one source of really good fats that he needs. Don't worry about it being saturated, this type of fats gives the body the ability to absorb nutrients from the veges if eaten with veges.
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When did you do egg? That is the one I'm super scared about for E.
i did that one pretty quickly too. after wheat, sals and amines i think?? it opens up a LOT more food options if tolerated too. if u are worried, then make sure to test when DH is home.
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me too, we did egg early on for those reasons :)
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Interesting about the eczema, Sher. I will say that I finally got the potassium hydroxide from my local source. We made the laundry soap, which has caster, coconut, and jojoba oils. H's skin is clearing up quite a bit already. I wonder if it is the olive oil for him; I know it is high sals (but so is coconut and possibly the jojoba). Have you had any change in products lately? How about your sunscreen, since it has gotten warmer?
Cleure has a toothpaste that is flavor free, if you are searching for something that is going to be dye/flavor free. We use this one.. http://www.cleure.com/Toothpaste-p/den01.htm They also have salicylate free skincare products, too. Not that you have to use them now, but if you find they are super sensitive, you may think about it down the road.
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Sherry you're so brave taking on this project. I know you can do it!! No advice from me. But loads and loads of support xxx
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Thanks guys. Today was a rough day. So much to be done, so little time.
Thanks for all the support. I have a ton of stuff to respond to so I will do my best to get on tomorrow during quite time. There was no quite time today because Emory fell asleep in the car, so I just let Lyle watch a movie next to the kitchen while I cleaned and cooked away :)
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I'm following along so I can learn. :)
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Dropping off more hugs. Hope today goes well. XXXXXXXX
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Deb - (in Oz) it is so complicated to know. It's the same way with Lyle. He also has Oral sensitivity (which is common in LO's with speech delay/issues) But, I'm inclined to believe that some of it IS behavioral/control. But I don't and never really have made a big deal of him trying or not trying foods. But, he seems to sleep grab a hold of that little bit of control that he can. I was also wondering if maybe you are a responder as well. (Like Chris is here) The reason I say that is because I remember you talking about sugar being an issue. So, I was wondering if it's actually maybe the additives/preservatives in the things you eat with sugar instead. That might help you with that issue to figure that out.
Elo -
Lyle has NEVER eaten mashed potato. Even back when he was a good (great) eater. That was my first clue that something might be off. LOL. What kid doesn't eat mashed potatoes.
He really only eats/drinks about 7-10 things. That might seem like it's an exaggeration. But, I promise you it's not. It's so bad that he is working on it with his speech therapist :(
I can't find ANY safe rice crumbs. I have looked. So I guess I will have to sacrifice some of my homemade bread to make crumbs??
I also can not find rice bran. And the worst one, I can not find ANY safe butter substitute. They all have something they shouldn't have in them.
I just have to throw this out there. I HATE onions (all kinds, even leeks and shallots). Therefore, I am really suffering.
Are you talking about the failsafe booklet that we can print off line. I did print that out. I have it. I also have the larger cookbook that you can buy.
I was thinking that maybe you could send out what ever info would be helpful soon? Just because it will take about 3 weeks to get here, won't it? Please let me pay you for some shipping (at least) this time :)
The only chicken he will eat is Mc Donald's chicken nuggets :( -(which I think cause a major reaction).
The only home sources of protein are yogurt, milk, bacon
Deb (in Maryland) Do you know where we would find gee here in the states. I think you've learned a lot from following other posts. But, feel free to ask any questions.
Jean - I found a tooth paste at the health store that said mint-free, so I bought it (for an arm and a leg) but then I got home and it has licorice which is also high. Sigh. We've been using it anyways.
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Ditto on the mashed potatoes, here. :-) I can get him to try about everything else. (At least one bite.)
I think chicken can be dry, so chicken issues maybe a texture/low tone issue for us. Plus sometimes he is really chewing it for a bit; no longer 30 mintues, though! More like just a couple. He will take a bite or two, and I call that a good enough just getting that bit in there to try. Inch by inch, you know? I have boiled it in water, cooked in oil, baked, etc. Is there any form he will tolerate more?
I think using your bread for crumb is a good idea, until you find another source.
Hugs for the onions! :-(
Did I remember that someone said cashews are ok? I know the natural food store has a chashew spread, or maybe make your own?
See how the toothpaste goes. It is likely better than the other stuff. :-)
I couldn't find any butter substitute that was soy/dairy free, when we did the soy/dairy-free trial. It was either or... I went to oils ( safflower/sunflower) for cooking. Is there a natural food store nearby where you could ask?
And for spreads, I only really used applebutter. I know pear is suggested (but I didn't have a lot of info back then), but I did peel the apples and bake them in the crock with a tad of sugar. Then I put it in the refrigerator and used that as jam. Trader joes has the organic apples by bag, and I used those for a reasonable price ($4) instead of paying $8 for the organic applebutter at the grocery store. I made twice as much for half the price. An option down the road, perhaps, as that many organic pears was a bit more spendy.
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Ghee is often found in Indian groceries, but you can clarify butter by melting it SLOWLY and using the clear stuff on top - the solids sink to the bottom. Here's a recipe, and Google will net you more is you search "Make your own ghee." http://mideastfood.about.com/od/dipsandsauces/r/ghee.htm
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I can't find ANY safe rice crumbs. I have looked. So I guess I will have to sacrifice some of my homemade bread to make crumbs??
I also can not find rice bran. And the worst one, I can not find ANY safe butter substitute. They all have something they shouldn't have in them.
This is where the US failsafe forum can help. Getting a butter sustitute is pretty essential I would focus all my energy on that. Crap, I feel like sending you over a truck load of rice crumbs.
Hugs Sher, this is going to hard if he is currently eats 8-10 foods. Will this diet be cutting out any fo those 8-10 foods?
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what is the deal with the mashed potatoes - mine never ate them either - did i miss some comment or is it the actual potatoes you were discussing or the texture. as awful as everything with alex is she added mashed potatoes into her diet at 7 years old which made a change from all the plain pasta (never oiled or a red sauce or butter - she avoids butter completely actually - only plain or with simple homemade cheese sauce that is just flour butter milk and cheese).
sherry - interesting that you mention the sugar, me possibly having issues of my own etc. we had friends here this weekend and she talked about how she was diagnosed ceoliac (?sp) last year and it was thought to have resulted from postpartem thyroiditis. i had that after alex was born and have been on meds ever since + my whole body, how i feel, my moods, tummy troubles etc all came afetr i had kids. as my friend was talking about her physical symptoms etc - dh immediately said - that sounds like you - i think i might have to look into some testing and information for both alex and myself looking at what COULD be going on and then looking at what we can do (what things can be tested for vs food elimination diet). i saw at the mall in one of the health food shops there is a woman who comes once a week with a machine to do testing for food sensitivities and allergies. do you think that is worth doing - a full review etc costs $120 i think and is not covered by insurance. or i could talk to the nutritionist we saw and maybe take the next step through her to examine food sensitivities (that was her next step if we made no progress with the food trying..)
what is a good first step?? (not meaning to hijack - i will go back to listening after this i promise)
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Deb - I would def. get tested. I am going to recommend it to my sister as well because she has the thyroid problem as well after her last child. If I remember correctly there does seem to be a link between the two. She told me that she is feeling bloated after eating these days. I know Eloys has had a lot of success with going to a nutritionist. I would bet the nutritionist would recommended testing as well though. The book says that you need to get tested for a celiac disease BEFORE you go gluten free or the test will not be accurate. You aren't hijacking at all :) This is a learning process for all of us. It also reminds me that I need to go get my thyroid tested, which I've been putting off.
Oh, and you are write, we were talking about simple mashed potatoes. Glad to know we aren't the only ones with LOs who won't eat them.
Ok, I have to write a list of everything we've cooked because it's coming up :P
Cashew paste (butter) twice. The stuff at the stores is not safe because it's roasted. So I made my own.
Carob cashew paste
Pear Jam
Pear chutney
Chicken stock
Pear/chive muffins
Bread 2 loaves so far (Lyle ate it today. YEY) That is a huge victory for us.
Blanched green beans
Vanilla Cookies
Golden Syrup (can't find in stores here)
Golden Cake
Pear Juice (Lyle won't drink it :'( but we are going to try to keep offering it EVERY day)
Honey comb (didn't turn out - too much humidity here I think)
Potato/Leek fritters
Plus a dinner for each night.
;D ;D ;D I've been busy.
Elo - the poor people at the healthy food store. They helped me so much. I just couldn't ask them for more help. I spent about 3 hours at the store, and I checked EVERY label, there is no alternative in this town. I think we are going to trial dairy first. Gluten first would be a cost saving measure. This flour is soooo expensive. But, I think for Lyle we will do dairy first.
Today he had a much harder day with it. We went out as a family to have some down time. We went to the state park and went swimming in the river. When we got in the car. He was screaming. PLEASE MOMMY, please can we go to the store and buy some milk. I just stayed calm and talked to him calmly and it past.
Can I do gee before we challenge dairy?
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i saw at the mall in one of the health food shops there is a woman who comes once a week with a machine to do testing for food sensitivities and allergies.
Deb, I would wonder about the person's qualifications to making such diagnosis. If it is something like the bioenergetic screening, I personally would save your money for a nutritionist/allergist.. I will add that it is just my opinion. We went to a ND (natropathic dr) for H, and I felt it was a hoax after doing some internet research on the device. You can find out what it is exactly and then do some research. Based on his test results, the nd sold us a bunch of products to help (uh, $100; I am embarrassed to say, but am saying to maybe help someone else). They were not able to be returned. THEN the kicker to the story is that she actually sold me products that have alcohol in them for my son. Honestly, who would do that and not even mention the content??? WTH! Never used them and never went back; dh had gone with to the apt too. And then we saw an internet story about her in the news facing legal action by a woman who was being treated for some mental health issues. I am glad we didn't continue to see her.
I personally saw a different naturopath (I wanted to see her before bringing H), and she suggested that I do $1200 worth of testing to look for allergies (out of pocket, as the nd services couldn't be billed through our insurance). She said "she" needed to do them; and she could only recommend the supplements she sold. I brought the info to my regular dr, and she said that I have had a lot of those tests already done. I decided not to go that route, and the dr had also mentioned that she had heard of her patients being referred for chelation therapy (or other therapies she has never even heard of). She contacted the state, and since then I have seen the FDA has come out with a warning against chelation. I thought I would mention it, in case that is one of the things that is suggested. Then you can see the recommendations in your area for any suggested treatment (this or anything else). http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm229320.htm
It is hard to know where to turn for help sometimes. Of course these are my own experiences, and I am sure there are good nd out there. I think making an apt with your dr and nutritionist is a good idea. If there is a place or a treatment you want to try, perhaps bring that to the apt.
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Sher, you are doing an AMAZING job. XXXXXXXX Hugs for the milk meltdown.
Eloys, as for the failsafe forum, this is it for dairy substitutes; pretty slim. It is from oct. 2010.
Fresh Mozzarella from Wild Oats, packaged in water with expire date
Organic Valley brand milk and cream cheese, butter (DON’T use any from plant 55 1224 may contain corn contamination)
Shedd's Willow Run margarine appears to be Failsafe
Ranchero Cacique Queso Fresco, seen at Wal-Mart
Marie’s cream cheese in a sausage roll, seen at Wal-Mart
**The only cheeses which are failsafe are fresh white preservative-free cheeses like ricotta, cream cheese and preservative-free cottage cheese if you can find it (Jalna).
Pacific brand rice milk but be sure to check the label
Sher, am I remembering you are doing soy free, too? I have used a margarine that is by earth balance for my cousin's son that is dairy free. It is pretty mainstream for vegans, so I bet it would be on the list if it was safe, though. I think organic valley is a bigger brand name? I wonder if you can find by calling a bigger store. If they have it (and some other things you need), then you could make a trip there, perhaps. An idea that is a pita, I know.
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thank you so much Jean!
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you're doing GREAT sherry, hang in there!! more hugs for the milk meltdown and well done talking him thru it.
ghee - yep you'd need to do the dairy trial first, but it is meant to be well tolerated even by those with dairy intolerance. what ingredients are you finding in dairy free butter/margerine that isnt suitable?? i know i was avoiding df marg with vegetable oil in it when i first went df/soy free with kingston as it was told to avoid this by gp due to soy oil. however, once i started seeing the dietician who specialises in the rpah diet, she says soy oil and also soy lecitithin/emulsifier are totally fine. they are so highly processed that the protein is broken down so much that it is rarely a problem, even for those who have soy allergies.
oh and hunter HATED mashed potato too! he's only just started eating it in the last couple of months. def a texture issue for him too as he hates mince/meatballs etc too.
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As for gee, I thought it was safe if you need to be dairy free as the proteins are all cooked out - can someone clarify? Kai has always tolerated gee.
Deb, as for food intolerance testing, there is no recognised test except food eliminations and diet. However, I will say I have tried some hocus pocus things and I do believe on some of them. Some have absolutely no scientific merit and some do i.e. linked in with chinese medicene etc. I found that the sensitivities identified through other measures and will only cover a small part of the food intolerance picture. I was able to try a few of these after we identified some of Kais sensitivities through the elimination diet to see if there was merit. What as the test the lady at the mall was going to do?
Jean: LOL I remember when you found out about that lady, how bizarre and unsettling. Very easy to laugh now :D
Great news on the bread Sher! Sorry that Lyle had to miss his milk so much and have a bit of tanti!
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Deb, that is interesting about the thyroid and celiac link becoming more widely known. Since my Hashimoto's diagnosis, I've learned that full-blown celiac is more prevalent in those with Hashimoto's and low thyroid, possibly in Hashimoto's because of the shared immune response (one theory). I'm actually going today to get blood drawn to be tested for celiac, or at least for gluten intolerance. there are apparently tests for just the intolerance, and I know I read about them on a Hashimoto's forum I visit now and again, but can't find the link with the info for the specific test, but even if I had to do that out of pocket it wasn't too pricey. Still less expensive to lay off the grains entirely.
Ghee being completely truly dairy-free depends on the ghee, apparently. I did find (thanks Google!) some instances where companies test theirs to be sure it's free of the proteins and lactose, but that's not everyone. If you're being super-strict about an elimination diet, probably best to avoid even ghee for a while unless you can find the good stuff. By and large, what make ghee "clarified" butter is that the milk solids by and large fall out - but if you react to even a trace of the protein, it's hard to guarantee that there's NONE. :-\
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That's what I thought Deb, I thought that the only people that would probaly react to gee would be those with dairy allergies, or what you would call a "super responder" which I suspected early on was not the case for Kai.
I would be very interested to hear about the gluten intolerance blood test details if you get them Deb and how it works.
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HAH! I found a link! :D
http://www.enterolab.com/StaticPages/Faq.aspx
This link is from the testing lab.
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I used Earth Balance as well for E before this. It was great. But... it has annatto (sp?) :( There are only a few brands that would fit the ok oils and other issues. But those two brands both have annatto. :(
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Another link about gluten sensitivity, with some testing info links at the bottom: http://www.glutenfreesociety.org/gluten-free-society-blog/the-many-heads-of-gluten-sensitivity/
I've heard good things about Earth Balance and had some when we eat at our friend's house - her DD has a number of food allergies so they use it exclusively for butter-type stuff.
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Ugh, annatto seems to be another thing that is in a lot of "natural" food products. It is hard to escape. We do try to avoid it, too. I don't even by yellow cheese any more. I tend to buy mozzerella, or if I want cheddar, they do sell uncolored cheddar (when I am lucky to find it; usually at a cheese factory or specialty cheese section). I don't know what to suggest there. :-( Maybe you will get through the three weeks and then that is one of your first things to trail (I think that was one of your ideas).
An acquaintance of mine from mom's group was quite ill for a year. She was to all kinds of drs to figure it out; the drs came up with a gluten allergy/celiacs. She decided to get a second opinion at mayo; they made her redo all of her tests with their hospital (no lie), which she thought was unnecessary. Turns out the gi there found a certain bacteria (not gluten at all) as the culprit for her issues; it was missed by someone not quite so specialized. She was happy to find out a course of antibiotics and probiotics was going to be the treatment, rather than a lifetime of gluten free.
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Its such a shame that the cheeses in the USA are that crazy yellow colour. Annatto in cheese does not exist here, totally different consumer market. Also it is in many juices, yoghurts and other drinks. >:(
In my oppinion no amount of preservatives or additives are good for anyone, they all have detrimental effects on behaviour in children hyperactivity, concentration, restlessness etc etc If there is no colour free cheese alternative, I would be keeping cheese to very small amounts. For Jarrah the only preservatives he has is in cottage cheese, and pain meds if he needs them, we just can't get cottage cheese other wise and also birthday party food - when he goes to them occassionally. Kai only has preservatives and addtives through paracetemol and neurofen. We drink water in the house, that solves alot of additive issues.
For myself and DH we have small amounts when there is no alternative, but basically additive and preservative free.
Do you have access to a supermarket store called ALDI over there? - it is German owned. They have recently gone preservative and additive free for ALL their products.
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*wants an Aldi here*
Huh. There's one about 30-40 minutes away. In a rough part of town, oddly enough. Maybe I should make the trek....
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Aldi is all over here. We have one 5 min away. I have stayed away, since it doesn't have much for organic (at least when I was there last). Their prices are really low for produce, but it is near expiration usually (needing to be used in short order). We literally have one 5 min away. I think I will check it out. Be prepared to bring your own bags, if you go. :-) Maybe an outing for us tomorrow after going to the library. :-)
Thanks for the hot tip, Eloys! :-)
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The veges aren't so great, I don't buy them, but they do have an organic range of packaged goods and dairy. They are still phasing in the preservative and additive free. I should look up the implementation date.
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wow on aldi going preservative/addivitive free!! cant wait til they start that!! will be checking them out this weekend i think.
sherry, i would think one of your first challenges then would need to just butter or just ghee for a week, then start another challenge. failing that then maybe annatto would have to be the next challenge?? as i think you will be somewhat limited if you dont have a butter substitute :-\
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I went to the ALDI website: - they are aritifical colour free. Doesn't mention preservative free. Drats! On second thought I can't imagine how they would get rid of preservatives from alot of the foods and sauces in jars.
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oh bugger! spose it was too good to be true!
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sherry, elo and anyone else - what recipe are you using for your waffles? i bought a waffle maker and dont use it as much as i like as i have to beat egg whites separately for recipes i have, wondered if you have a failsafe recipe that works well without beaten egg whites?? guess i could make a batch and freeze, as it's just not as quick as i would like to make snacks for the boys when you have to beat egg whites first.
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I make waffles every other day with two eggs just lightly beaten. They puff up a but within the waffle maker since the steam is applied from both sides -there is no need to beat the egg whites but the waffle is quite dense its not light and fluffy or air filled but light enoguh to enjoy KWIM?
I do it all by eye, just make up essentially a pancake mix - 1 cup GF flour (I use 1/2 cup buckwheat and 1/2 cup of the packet GF flour), rice milk and two eggs to get a thick consistency rather like a very thick custard or like thickened cream. I also add pureed bokchoy and grated sweet potato or grated zucchini (really yummy with the zucchini). For a sweet version: grated apple and 1 teaspoon maple syrup. The grated stuff might be about 1/2 a cup. You can refrigerate left over mixture for up to two days and use. They must be eaten fresh though do not keep well in fridge. And any mixture with potato will not keep, it goes brown!
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fabulous, thanks elo :-* not that K will prob eat it. he is worse than before with his fussiness after recent gastro. now flatly refusing to drink his milk too which i used to rely on for his vitamins and calcium cause he is still on such a restricted diet.
sherry, something to try that both my boys grab by the handful is roasted chickpeas. i buy a tin, peel the skins off (a little tedious but they rub off pretty easily), lightly spray with rice bran oil and lightly salt. DH LOVES them too and he's even harder to please. H will actually ask for these over popcorn now ;D
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Great ideas, gals. Heath will eat chick peas plain, too. It reminds me that it has been a while!
Kirry, hugs for the food refusal that is happening right now. No fun there.
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Hey - it's funny that you mentioned the chickpeas. We just made a batch - by coincidence, and they did not turn out at all!!! The consistancy is really weird and they don't taste right. We did the recipe in failsafe. May have to look on line for better oven temps etc.
We didn't peel them either so that might help.
Also- funny that you mentioned the waffles Kirry - I guess we are all on the same wave length right now. Twice now I have made GF waffles. The first one turns out great, the next one and every one after that sticks to the maker!!!! Soooo frustrating. And also with using the egg substitute the batter seems to go runny very very quickly. So by the third waffle yesterday (because of the sticking) I had the throw out the rest of the batter and I just wanted to cry because these are expensive waffles!!!!
Kirry- with reg. egg- if you are just doing it quickly you don't have to beat waffles. But..... it does make such a difference on how the waffles turn out. I do it either way depending on how I feel. For the egg free receipes it does not call for beating. But, it might help in my case. Who knows. But, it's very frustrating. Lyle loves waffles. Thankfully I've been giving him the first waffle.
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The waffle iron people say not to do this, but the ONLY way I can keep the waffles from sticking after the first batch is to spray the iron before I add batter to it. Not sure it's good for the oil or if it changes the content enough to make that a no-go, though.
I also make sure I add a little extra baking powder partway thru the process, like when the batter is half-gone, which seems to help add a few more bubbles. I am WAY too lazy to do the egg-white-beating step! :D
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Sherry:
The first one turns out great, the next one and every one after that sticks to the maker!!!!
Hugs Sher, I wish I could have been there to help save your expensive mixture :(
I always rub oil into the waffle maker too!!!! A sure fire way to prevent sticking. The mixture will go quite thin it does sometimes for me too, just add more GF flour. You can also add grated swede into the mix if you want to get more vitamins into hmi, I bet he won't notice, the grated bits completely cook in minutes it's pretty cool.
The chickpeas need to be roasted slowly but for quite a qhile like maybe 30 mins on a moderate oven. They go crunchy throughout. No mushiness left.
Hugs for the food refusals Kirry, but to be expected with the sickness right? Kai ate solidly for weeks after all his sickness and now finally is looking stocky. Can't wait to get him weighed. He defo lost weight when he was sick though :(
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Sher, do you have a griddle that may allow you to repurpose the mixture in to pancakes, if it doesn't work out right? Will that not work as a back up plan?
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sorry i can't keep up - thanks for the advice about going via the nutritionist for testing. the health food/vitamin shop at the mall is offering the services of Nutritional Wellness Australia and uses computer technology (Bio Meridian Technology) - sound like hogwash or is it something any of you have heard of - uses body's vibrations...
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Elo - he will notice :( I can't tell you how many times he ate something - I messed with it, and he no longer eats it :( I have to be really careful about that. He seems to have a super sense of taste/texture and small for these matters.
Jean - I didn't think of trying to add more flour, the first time we did it, we did get a skillet out and try to make them pancakes. but, they didn't turn out either. So I'll try the flour next time. :)
First day on my own and it's been a rough one. I hope things turn up soon.
We now seem to have OT for both boys into the mix. In spite of that I still woke Emory at 2:00 from his nap as he usually fights me (not DH) going to bed. So I need all the help I can get in that area. So hopefully cutting the nap to 2 hours will work.
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Just read this thread - interesting!
Deb - curious how your testing comes out. But aren't you off gluten/wheat anyway? If so, the results shouldn't really be accurate? We did this test for DS and were very happy with it. Here is the link and attached were/are his results.http://www.greatplainslaboratory.com/home/eng/food_allergy_igg.asp
Given his dairy intolerance do you think ghee would work for him? We are currently using Earth Balance.
LOVE roasted chickpeas here. I drain and rinse a can of them, dry them well between paper towels (to loosen the skins), then remove all the skins (yes tedious but helps the texture) then dry them again, then mix them with 1 tbsp olive oil, 1/2 tsp cinnamon and a pinch of salt and then roast them at 400 for 40 minutes. Then I stir in 1 tbsp honey and roast for another 7 minutes. So good.
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I have still been drinking a beer or two now and again (OK, daily - it IS Summer! ;)), so still getting some gluten. (There is gluten-free beer, but I have yet to find one I like. :P)
The gliadin tests came back today. one came back Negative, the other "Equivocal." ???
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Deb, I wonder what that means? I hope the dr has an idea for you.
Sher, I think you are right to keep preparing the food with the textures he likes. He is already being presented with many new foods/flavors, I would guess. Out of his seven foods, how many can he still eat on the ed? I still need to look at supplements, that reminds me! Sorry! Did you spot anything? I will look a bit today.
Eloys and Kirry, I wonder if you have any vitamin suggestions. I remember that Eloys mentioned Kindervital for H, way back when. It was available here. Perhaps something esle would be available. Is kindervital out for certain?
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My doctor is diet-clueless. :P What it means for me is that I'll be cutting gluten entirely - most grains period - for a couple of weeks to see if I notice any differences.
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He seems to have a super sense of taste/texture and small for these matters.
I guess trusting the food is important for him then :)
Deb: I didn't try the bio meridian technology although I don't think it's total hogwash, I do think it has some merit. But not scientific though.
Jean: Kindervital is definantly out. Sher, recommended supplements are at the back of the RPAH elimination diet handbook. I hope some of those are available in the USA. I didn't use a general multiitamin for Kai, we use a specific combinations of vitamins and minerals given his known food intolerances.
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Sher, how are you hanging in there? I hope you are doing ok. XXXXXXXXXXX
Eloys, I think bio meridian is the same as bio energetic. Did they have you hold an cylinder type thing on your body and then take another piece and touch other points on the body?
I will say that may radar was up because the natropath wanted me to hold one of the pieces on H's tummy the first time, while she did the testing. Then she said she would let him hold it the second time. Then she said he would be sounding much better the second time because of the supplements she suggested. ;-) (Yes, the supplements that have alcohol in them...) Gee, I could guess that it would sound different by the fact that I am no longer holding it, and he is instead??
As Eloys said, it isn't scientifically proven. Deb, I think you should do some reading and then make your own decision; don't let me particularly persuade you one way or another. This was our experience with a person that obviously had some credability issues. I do think there are good natropaths out there, but she definitely was not one of those.
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Things are ok. We are hanging in there. I don't want to get my hopes up, but things seemed better today.
Sleep has gone off since we started though. The very first day we were on it, that night/morning he had an EW and we haven't been able to get back on track yet.
Emory is loving life, and loving this diet :)
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yay Emory!
Jean it wasn't scientific enough for me to try ;) and my naturopath personally doesn't recommend it or do it. I trust her opinnion, she just sticks with foods, supplements and herbs - the nutritional holistic side of things.
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Sounds like good advice, Eloys. That is exactly what I mean about finding a good naturopath; they ARE out there. :-)
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Hoping things are going well, Sher! Great news that Emory likes it. I hope Lyle is adjusting, too.
Here is another random suggestion with regards to our cooking strategy. I have found that I really have to do quite a bit of cooking once a day right now. I am lucky enough to be able to do quite a bit at nap, or H is willing to help after nap (if it needs a bit of prep). Or we come in an hr before dinner, and I prep like mad while he plays next door in the playroom. I cook a good sized dinner, so that dh has some to take to work the next day. And I usually try to make enough for Heath and I to have lunches the next day as well. If there isn't much for leftovers, I do something easy like sandwiches.
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I was also thinking about rice crispies or rice chex to make rice crumbs. I don't have a box to check the ingredients of either, but it was an idea. Maybe an organic variety in the specialty aisle will be ok. Also was thinking that the panko type bread crumbs may have a gluten free variety (you will have to escape any other preservatives/additives, I know).
http://www.b2bworld.com.au/hp/webcontent18.htm
This site sells orthoplex children's formula, but you can see there is a hefty shipping charge. Perhaps a trip to The Vitamin Shoppe, if you have one. We have one right next door to Trader Joes. I wonder if they can get any of them? Maybe they are marketed under another name here, but how would anyone know.
I don't see any suggestions made by RPAH about what to avoid in the supplements, or what makes those particular supplements ok to use, iykwim. If they said exactly what to look for, that would be helpful. I looked through most of the list, and everything has au in the address. Some may ship overseas, but it looks pretty pricey.
Perhaps a post to the usa group would stir up an option.
I think you are 11 days in. Over a third of the way until you can start some trials! You all can do it!!!! Can you feel the peptalk? :-* ;D
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So, I see in the far right corner a list of what to avoid. I wonder if you head to the vitamin shoppe with the list of things to avoid, perhaps you will come up with something.
Hi Sher! I think you are checking out the thread. I thought I should post what to avoid, in case others are looking but don't have the info.
Avoid products (multivitamins) containing:
megadoses, PABA, colors, flavors, herbs, bioflavonoids, rutin, kelp, or hesperidin
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I stopped at the vitamin shoppe with the list. I found one that was a partial match, but it had strawberries/grapes/other fruits as natural flavoring. It also had some herbs. No real solution there. :-(
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I wrote a huge log post out yesterday, and Emory erased it :(
I just hopped on her after getting done with work and he just woke :(
I was planning on letting him take a little extra nap today because both nights have been really short for him, so of course he decided to wake anyways. Sigh.
We just went ahead and did our best and bought some vitamins. We can't go with out them much longer. We ordered from vitacost on line. They had a no preservatives, etc. label on them. There are some natural flavors. When we get them I'll look closer at the label. I may regret it, but I did my best.
Things are not going well at all here. Lyle has lost 5 pounds in ten days. My mother's instinct was that he would not just start eating other things once he's favorites when away and I was right :(
On top of that Gluten Free does not go well with a boy with texture issues. The last two times I made pancakes the centers did not come out right. They were way way to spongy.
So DH went to the store last night and bought a good prepacked mix and they turned out pretty good this morning. He wouldn't even bite it. Just kept crying too yucky etc.... :(
Well, Emory keeps fussing, usually he will just lay there.
Life with two OT boys is not going well. Lyle has dropped 45 min off of his sleep at night. And I guess nap cutting has caught up with Emory, or maybe because Lyle is so stinking loud in the morning >:(
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5 lbs in 10 days is significant. :-( I don't know what to suggest, but I do really think finding some professionals may be helpful. Is Emory's "good" dr back, so you could ask for some leads (nutritionist/gi/allergist). Or perhaps the ot would have some more thoughts about other professionals to "enroll" in this task.
I wonder if hunger is behind the reduced amt of sleep? Do they want to eat/drink earlier, or seem to be hungry when waking?
I did see this book (and I mentiond it on Kirry's thread a ways back), but I wonder if it would have any ideas for types of professionals that may be able to shed some light and expertise. http://www.amazon.com/Food-Chaining-Feeding-Problems-Child%C2%92s/dp/1600940161/ref=sr_1_1?ie=UTF8&qid=1311102804&sr=8-1 One reason some of the parents mentioned they didn't like this book is that it focuses more on kids with some serious eating issues (so not for the general picky eater), but I was thinking it may give you some leads. Perhaps read the first review on this book; it is by one of the moms in the book and she mentions EE being behind feeding issues for her son. Perhaps the right professional can help you turn over a few more stones or help you through the ed.
You are a super mom, sher. Got to run...time to take H to ot. XXXXXXXXXXX
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The OT is moving. So the SPL is helping us with all this while we wait for the new OT to start. The SPL is great, and he is trying new things with her, etc. It's just really slow going.
We only have one session booked with this OT before she leaves because we would rather save some of our sessions that are covered by insurance for Lyle to have time to bond with the New OT. I like the OT he has now, but I don't love her. She's not proactive (you might even say lazy) but she is good with Lyle and she has helped him come a long way with some of his other sensory issues.
So, we introduced milk back in today. The RAPH says at least two weeks. We are two days shy of that. But, to be honest if he is hungry and OT I don't know how we would even know that he has reached base.
He said a 9 word sentence this morning. He's speech is really doing well. So that gives us something to look at. If his speech drops or he starts drooling more then I think that will be some symptoms to look for regarding milk sensitivity.
Please give BW vibes that he will pass milk. I really need him to pass milk. That would be more important for us then even gluten.
So far we are pretty sure he reacts to nitrates and propionates
Thanks Jean for your post. I needed it today. *hugs*
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Oh Sherry, I hate that this diet is taking a turn, so Lyle is just not coping with the change of foods, and now has lost weight. I know weight loss on this diet for adults is common and ok, but for kids I would think that's it's not healthy. Especially if it is due to just not eating enough as opposed to cutting out the junk. They say the weight loss for adults is attribured to getting all the packaged foods out of their diet.
Hugs for his speech getting better.
I have no reference point for those on the diet and with food aversions/texture/taste sensitivities and what that means. I am wondering if you will get nearly as much bang for you buck with putting him on just additive and preservative free (the simple apporach) and as you are doing very quickly bring back wheat, dairy and other allergins that were exlcuded. That way he will still have his favourite foods but without the major chemicals. The experiments conducted in Australian schools - where the major improvements were found on childrens behaviour was through the kids going on the "simple approach" diet.
So as far as nitrates and propionates and all of that are concerned, really if you are looking for a short cut I would assume sensitivity to all preservatives and addtives and exclude them from his diet for a long time and do food challenges at your leisure. - If it does not compromise losing some of his staple foods. Really there is no upside to having these things in your diet except for convenience. Do you still want the food challenge protocols on how to do them??
Dairy challenge is one glass of milk or more every day for 7 days.
Wheat is a bowl of pasta on day 1-3 plus 1 slice of wheat toast without any preservatives or additives for day 4-7.
Nitrates is hard to challenge without confusing amines in the picture. I think you need to do the amines challenge first, as nitrates are basically in all high amine foods.
Amines are challenged by eating 2 bannanas a day and 100g chocolate (if you want) - preservative and additive free. Between each challenge one needs to let symptoms settle then wait for 3 clear days and start again. All hard to do when you have a boy struggling to find things to eat!
Are you able to get on the FED UP website again - now there is a forum running rather like BW - it is not email groups anymore. Maybe they can point you to US dieticians specialising on the diet?
((hugs))
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I hope the dairy is fine. That would be huge. YEAH for the 9 word sentence!!!! Whooohooo! :-) Go Lyle Go!!! I absolutely agree that being ot and hungry is not going to give you any idea if he has reached base. Ugh. Things would be literally off the wall here with that combo.
I think a fed up forum sounds much better than the email system! Hooray for that!!!!
If you pass gluten, TJ has a bread that is sprouted wheatberries (no flour). It is pretty good, and it is free of proprionates/preservatives. Have you seen that one there? I think it says something like "look pa, no flour" on the top of it. But it isn't the light airy texture, if that is what Lyle likes.
TJ has spelt bread. I briefly saw that it said it wasn't wheat (I think; don't quote me). I dont' even know what that is exactly...
Lots more hugs, Sher. You are really doing a great job!!!! And I forgot to drop off those very needed vibes!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I came back to add that the book I mentioned is not available through our extended library system.
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I'm hoping the dairy is fine too and I do like Eloise's idea of focusing on whole foods without chemicals/additives/preservatives.
I believe spelt is a pre-cursor to wheat. Some wheat/gluten sensitive kids can tolerate it, others can't. A friend of mine thought her DS was OK with it but it built up in his system after a few weeks and started causing reactions.
HUGS!
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The bread I mentioned does have some soy; I don't think it will work for E. I think he is soy free, too, right?
Lots of hugs; I hope the boys get some sleep tonight. Hope the milk is tollerated well, today. XXXXXXXXXXXXXXX
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Elo - Yes, I defiantly still want the protocol. We haven't given up yet. The three of us are still doing this full on. With Lyle, will try to do the others as best as we can. I don't think I would even trial something like nitrates or any other additives/preservatives. I really see no reason. We don't need those in our diet and I am 100% on board with getting rid of those period. When we trial amines I will just do banana and bacon, because those are the only amines that Lyle will eat anyways. I can get nitrate free bacon.
Jean - thanks so much for that book link. It looks fabulous. I read the whole preview. It seems like the PERFECT book for us.
I am going to write out an e-mail to the SLP right after BW time. She really supported the diet and wanted info on it. Her children are casein and gluten reactors. So besides her training with food issue surrounding speech problems she also has first hand experience on what it means to have a child who is "different" than others. I think Lyle has really found a special place in her heart. They had such a rough start to things when he was only 2years and 3 months old. She has seen more than anybody the journey we have already made, and the journey we still have ahead of us.
No regrets starting this Diet. We've already learned a lot.
We've learned that his feeding issues are not behavioral. I think that was important to learn now because the ILs are coming in a little more than a week. And I can say to them.... how much longer am I supposed to "hold out." I know they and many other people just think if we were stricter parents we wouldn't have these food issues. A little tiny part of me always believed that too. We took away EVERYTHING he ate. So the next road for him is a "food team" of specialists, like the book recommends. For us it will be seeing how Emory does tonight. I'm nervous. He hasn't had any milk products since he was about 8 weeks old (through breast milk).
Elo - quick question. Do we stop the milk trial as soon as we see symptoms. DH is already experience a tight jaw and feeling "scattered" in his thoughts. It's too early to tell with Lyle.
Karen - thanks for answering on the spelt. You are right. We can't have spelt on this diet.
Also, quick note: Lyle had milk for dinner. However, I'm taking Jean's advice from way back. I put 23oz of milk in a mason jar and I told him that's all he could have for the day. When it was gone, that was it. I also watered down the milk so it would last him longer. He is telling me now that he doesn't like oatmeal. I guess he may have eaten too much of it. Our package came in the mail so he had some gluten free pretzels. We also gave him his new vitamins. Which he screamed and cried, kicked and spit out all over me. *sigh*
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Sher, sounds like you have a good plan. Thank goodness others like Eloys and Kirry have been through all of this. I love your slp; she sounds fantastic. :-) I don't think the university program has much info on the food connection, as I watched the grad slp feed the group of boys both doritos and cookies (with frosting and dyed sugar sprinkles). :o :o :o I was pretty surprised. Last week they did smores, because the theme was camping. I guess I could see that one coming...
As far as the milk, I think it was our pedi that gave us that advice a long ways back. ARe you trying to only do a certain amt? Is there a reason behind the 23 oz? Is he fine with the water added? (Sorry for the ?'s.) Heath can spot watered down milk pretty quick, but if it is done at the beginning, perhaps he won't notice? I haven't really done it; perhaps a few days a long time ago.
Dealing with family can be difficult. I feel like I am always walking a tightrope between being to restrictive and allowing H to learn to be an adventurous eater (trying new things). My biggest frustration is that neither dh's nor my side of the family read labels at all. (I am surprised my mom is the worst, as she went through a lot of food intollerance with my brother.) My mom always gets the cheapest product (you already know eating this way is not cheap). So yogurt is on sale, she brings a load of yogurts with dyes and etc. Heath wants to eat it on the spot. I casually glance at the label and ask if she looked at the ingredients (sometimes there are strawberries and such). Of course she says no. Or we are at the ils and they have bought a dyed high fructose corn syrup cake. Perhaps I seem like a "food snob" to them, but they haven't had to live through the the reflux, sleepless nights, food refusal, rashy bottom, skin irritation, and exhaustion/weariness that food intollerance has brought in to our lives. They get to causually see it, iykwim. Maybe I need my own thread by the sounds of it. :-\ We are so happy to have H despite the food challenges that have come our way, of course. ;D And I do really love to cook, so it isn't like I am locked up in the kitchen doing something I hate. PerhapsH landed in the perfect spot. The apple didn't fall too far in our case.
I will say that I read the preschool section of the book "Child of Mine: Feeding with love and good sense" (the copyright was 2000). Perhaps it isn't the most current thinking on feeding; I don't know. The main idea is that parents provide the what, when, where of eating, and the child is responsible for how much and the whether of eating. The "managing food allergies" section in nearly nonexistant, as it is two pages long for preschoolers. Perhaps the ideas would work if food intollerance and allergies are not in the mix. And I peeked at the sections for younger ones, and I don't even see any mention of food intollerance/allergy issues mentioned in the special issues for bfing section. :-( I do think the other book seems more applicable; I hope it is as good as it looks.
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Elo - quick question. Do we stop the milk trial as soon as we see symptoms.
Yes definantly. If you unsure, continue the challenge until symptoms worsen.
I'll be back, I didn't read all.
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Sher I am pretty sure you can drink more than 300ml of milk per day on the challenges, day 3-7 is 600ml. Bascially you are trying to create a mega dose to ensure that if they pass, they really do pass. I think anyone would feel bad after drinking 600ml per day - personally.
I haven't scanned the protocol yet. I will try to find a moment to do so tomorrow night, its about 8 pages long.
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Elo - no rush. You are doing me a favor and I appreciate that. I will PM you my address when I get a chance today so that you don't have to hunt it down. Or do you think the scans will be good enough to read electronicly. I hadn't thought about that. Maybe you don't have to ship them.
My only thought on the 23 ounces as I thought that was really the max they should have at this age. What are the thoughts on that?
Jean - does the book talk a lot about the sensory aspect? Because I really believe that is what we are dealing with here.
He sits and watches me add the water. I think he is just sooo happy to have milk back that he doesn't even car at this point. I just am trying to remember to do it first thing at the start of the morning so that we don't run into problems later in the day. Oh, also I do it because he gets plenty nutritionally so I don't have to worry about that end, and then I still give him whole milk. So I was thinking maybe he shouldn't have unlimited quantities. You aren't limiting H's anymore?
I read that they put fillers etc in with the 2% and lower, so I just decided to stick with the whole milk and dilute it. Does that seem rational? It's what DH prefers anyways. Although I believe that both DH and I have failed the milk challenge.
Oh, and Lyle slept his normal 11 hours last night. Hurray!!! So the milk didn't effect his sleep. I'm pretty sure it might be effecting behavior a little. However, he might just have a lot more energy today and it seems like more than usually because I've had a whiney irritable boy for 2 weeks. So... I'm just going to keep an eye on it and if it doesn't seem to effect his learning/speech, I think we will keep it in for now.
I had this idea, that maybe I will add a little tiny bit of almond milk (in the future) and slowly slowly slowly maybe we could go to something like almond milk. Although if he is a salycilates (sp) responder that might not work. So we'll just have to wait and see.
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The book child of mine doesn't cover sensory issues. :-( But I was hoping the food chaining book would have a bit more with regards to medical/other conditions that may be factors. My guess is that sensory processing issues would be fairly common enough in a group of kids with more extensive food avoidance. Try your extended library system, so you don't have to buy it in case it isn't comprehensive enough. I have fingers crossed that you can find it to check it out.
Ok, so I went to barnes and noble on line. I think chpt 4 of food chaining has a sensory evaluation. http://search2.barnesandnoble.com/BookViewer/?ean=9781600940163 I hope the link works for you. Click on the table of contents; it wil let you read the first page of it. BN used to have a link where you could see if the book was available at your local store. I can't seem to find that option, but maybe call to see if they have it in stock for you to look at before you buy (if the library doesn't have it).
But I also like that chpt 1 is a medical evaluation, so it probably walks through some medical issues that could be a factor. I still think looking at that may be very worth your time, too.
As for the milk, I think the whole milk is fine (recommended in Nourishing Traditions, anyway, am I remembering that right Deb, Eloys?). I think I missed the memo on only 23 oz of milk a day. H probably has about 30.
Does anyone have a recommendation for a pitcher to use for milk (so H could pour). I could put the daily amt in there to see how far it is going. ONe of the suggestions by the Child of Mine book is to have kids scoop their own food. I will admit I am horrible at that because I usually put together his plate, so it has time to cool. He is very sensitive to the temp of his food, and likes it room temp or cooler.
Funny that you and dh have failed. (I say funny, but I mean a combo of oddly and surprisingly.) I hope Lyle will be able to tollerate it. It is hard to tell if it is a one off or not feeling well for a few days or contiual ot. Sometimes it is so hard to tell when there are a number of "or"s. We did rice milk during our dairy free trial because of the salicylates. After our dairy free trial, I also went mostly milk free. I still do cheese. What can I say? I am a Wisconsin girl after all; it's in my blood. ;-)
How is E doing with all this? Is he doing pretty well?
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E just failed milk. Or at least I'm pretty sure he did. Elo I'll take your advice on this.
So today was
Wake 6:45 ish
Nap 12:30sih
Awake 2:00 on the nose. (woke on his own. Was def still tired and a little moody this afternoon)
In bed at 7
Asleep 8:22. He was very upset. He hasn't been like this in a long time. Then he let out a huge burp after a bit. Then he farted about 4 times. He also did this weird cough thing, that I've never heard him do before.
Please cross your fingers that he does ok tonight.
Jean - That's so funny about H. Lyle is the same way, it has to be room temperature or lower. His showers have to be down right cold. What we do for food is he has to touch it. Then eventually he has to kiss it. (this is what the school spl has him do) if he won't touch it, then I have to ask him permission to put it on the back of his hand. Then we try to work up to taking one small bite. He is allowed to spit it out. BUT - he can not use his hands. He has do use the mouth muscles to get it in the trash.
So we were reading a dino book today. And I made up this story about how the dino took his orange medicine to grow into a big huge dino ;D ;) That's what I told him this morning. He told me "Lyle, big enough" heh
The DH and I failing milk was not a big surprise to either of us :) Both of us went milk free in college. But, then we seemed to be ok after that. But, I think now I know (from here) that intolerances don't seem to go away, the symptoms change (enter eczema).
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Poor Emory; although I know you are not surprised. Now I hope Lyle hangs in there. Interesting about you and dh going dairy free. Sounds like your skin is clearing then. There is some good news. Fingers crossed for both boys to have a good night. XXXXXXXXXXXX
Is the book with the orange medicine a prep for vitamins? His response was super cute. :-)
I think I am actually going to order the food chaining book; it would be good to get some more "tools for my toolbox".
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Keep going one more day if you are unsure, it sounds like the start of a fail. Best to be 100% sure.
The scans will be fine to read over emjavascript:void(0);ail! :) :)
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During the night he did well, but he woke at 5:15. DH got him back to sleep, but he woke Lyle up. and Lyle isn't going back to sleep. Every night he has started to use the sun argument on me. So this morning I said, lets try to go back to sleep Lyle. The sun isn't up. So the cheeky monkey says, the sun will be up soon.
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I forgot to specifically say that Lyle had the shortest night last night that he's had in a long time. He slept 9h50min. Because he woke at the regular time yesterday (6:45) we did bedtime at regular time. I was hoping he would be ok. I really didn't have much choice because I had the boy by myself. He either had to go down much earlier or even later. Oh well. Not sure what to do tonight as early bedtime didn't really cut it last week. I don't think he would take a car nap because he just did the day before yesterday.
He also wet through. A LOT. I think he ended up mostly having milk for dinner. So too many liquids at bedtime.
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Elo - how long do we have to wait until we can challenge gluten?
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Sher, it is up to you really. As lonog as you have 3 clear days between the end of a fail. So if you have a failed challenge, you go straight back to the strict diet until symptoms clear and then wait 3 clear days. Even if you have passed challenge, until you have completed all your challenges, you must always go back to the strict diet. This is really important.
I have the food challenge protocol ready, but it is 9MB so if you can PM your email address I will send it to you. And if anyone else reading this wants it, just PM me.
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Thanks :)
I thought that was true of all but dairy and gluten. Can't we keep those in?
(well, only Lyle for the milk. But we are all hoping to pass gluten)
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Um m you might be righ ton that Sherry, its on the protocol. Will email it to you now!
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Thanks Eloys :) Have already read a lot of it. It's very very helpful.
I might post this on the failsafe forum, but do you know of something else DH can do for the Amines challenge. He reacted really really badly to coffee and milk, so he doesn't want to do milk chocolate.
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What about wine for amines? Mushrooms?
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He would love to try the wine, but I think there are sulfites (sp?) in it :( So maybe the mushrooms would work.
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yep if no reaction you can keep in dairy and wheat.
wine is amines, salicylates and glutamates so def a no go, as are mushrooms. there is one type of choc here, 70% dark choc lindt, that is soy and dairy free so ok for the challenge but not sure what is available to you there. i assume your DH will eat the bananas but you need something higher in amines?? will he eat pawpaw/papaya?? or if you can get the nitrate free bacon/ham then you would be able to use that too (are you able to tell me the ingredients list so i can double check for you??). that is very high amines due to aging etc. or something like canned tuna or salmon is high in amines, again depending on other ingredients. cocoa powder is what i used for kingston to test higher amines so you could make choc gf pancakes or something similar?? roasted cashews would load his amine levels a little but prob not enuf for a significant challenge. that's really it for amine only food options.
with kingston, if i suspect a reaction (as in possible but not definite reaction) then i keep at it for 3 days to a week before deciding if it is a reaction or possible reaction that needs rechallenging. if it's a definite reaction then i stop straight away. with what you said for emory i would prob call it a possible reaction or as elo said signs of early reaction in which case you should get something more conclusive in a few more days.
think we may need to look at that food chaining book too for kingston.
is lyle still going well with milk? i guess the only reason to limit milk intake is to ensure they are hungry enuf for food.
hugs hun, gotta run as kingston just busted his nap :-*
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bananna and dark chocolate (70%) - so no dairy are the best for the amine challenge. 2 x banannas and 60 -120g of chocolate per day.
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Dropping off lots of hugs and encouragement for you and the family!! XXXXXXXXXXXXXXXXXXXXX
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Thanks guys. The issue with the chocolate is he has found that he is SUPER sensitive to caffeine. He had no idea until we did this diet. I will check the bacon and see what it is it. If I remember correctly is is cured with celery salt?
Oh, well. We will have to challenge dairy again then. I gave up on E. But, I'll do it again in another week or so.
With Lyle..... uhhh.... I honestly have NO idea what is up with him. He was up at 3:55 this morning. I have no idea why. I'm not sure if he was up for good then. But, I know he was calling for me at around 4:30ish and he had a really really lose stool. I was so proud of him though, he got up and used his potty in his room. It was hell to clean up at 4:30 in the morning though.
I got the book on Kindle so now I just have to find time to read it, and look into making all the right appointments etc.
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Great job to Lyle for using his potty! I hope he went back to sleep for you and that he is having a pleasant day.
I found a small glass pitcher that H is able to pour for his milk; now I need to figure out how to portion it. I think I will mark the oz on the pitcher, and then I will give him the max amt for each meal in the pitcher. Eating has been up as long as I keep him fibered. If he starts to have a hard time pooing, he decreases what he is eating.
How much milk are the moms of 3+ yr olds giving? Sher, you are doing the 23 oz for Lyle? Did you stretch it to a particular amt by adding water?
I hope the book is good. I didn't remember you having a kindle. I am still trying to decide what to order with it to get the super saver shipping on amazon. ::) :P
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Jean - I got one for Christmas. A total surprise. I hadn't asked for it. And to be honest when I got it I was kind of like... hmmmm... not sure about spending so much on this, etc. But, I Love it!! It's so easy to pick up, put back down, etc.
That's interesting about the fiber. We don't usually have fiber issues here because Lyle used to eat SOOO much whole grain.
I had to laugh about the going back to sleep.
I think I'm going to start a post about the sleep. I'm feeling pretty down about it today. Probably because I got so little of it myself. But, I did want to tell you Jean that we've been having NWings so I let him leave the night light on last night. He didn't NW around the time he has, but he did early wake. But, then I was sort of relieved that I did happen to have it on because I think he would have had to go in his diaper otherwise because I waited so long to go to his room. I can't believe how long he patiently sat on the potty for me. He just said calmly over and over again... mommy.... mommy. I had been up with E from about 11-1:30/2 ish. So I was so tired I found it really had to get up. He is behaving really well today for being on such little sleep. But, he's spending a lot of time in his room.... that's a whole other post. Sigh... Remind me that this too shall pass. 6 month growth issues I reckon.
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huge hugs sherry :-*
jean, H still has 2 cups of milk a day, one with lunch and one with dinner, i dont measure, i'm guessing it is around 200mL per cup so around 12 - 15 oz a day.
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The issue with the chocolate is he has found that he is SUPER sensitive to caffeine.
sherry that's why i went for banana, pawpaw and cocoa with kingston as a few squares of the 70% dark choc would keep me up half the night so no way was i giving it to him, lol.
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You know, I don't know how you guys stay sane with these trials I really don't.
Lyle has woken Emory for the umpteenth time lately. Lyle most days is getting over 10 hours of sleep. But, Emory falls a sleep much much later than Lyle. So Emory only got about 9 hours of sleep last night.
How do you tell ANYTHING when the sleep isn't right :(
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Well sleep is now Kais main symptom. SO for us, we had to ruile out teeth, sickness and props, reflux dosing issues then we were still left with long NW's. This was a 6 week process of being awake 2 + hours a night. As soon as I pulled Kais diet back his sleep improved dramatically. So bad sleep can mean that they are reacting xxxxxx
It is a long process and very hard to complete challenges with so many variables... that is why I say keep going with the challegnes if unsure.
Many hugs xxxx this is really tough, its not easy hun xxx
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With Lyle the sleep issues didn't start UNTIL we started the diet :(
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When we went dairy/soy free, he was more irritable with regards to the dietary changes, and his sleep was worse. We were increasing the salicylates just to accomodate the dairy/soy. It is hard to figure some times.
Sleep has always been heath's biggest indicator that he is not feeling his best.
But I will also say that right now, H is reducing his overnight a bit. But I am not really willing to cut out nap. He wants to nap. And with the dry mornings, he has to go right away and can't go back to sleep anyway. So, I don't think no nap is really going to give us much more sleep, iykwim. I wonder if the night time dryness is a factor for Lyle, too?
That can make it all the more confusing to pin down the direct causation; and possibly it may be a mixture of factors that are winding themselves together?
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Jean - you read my mind. I was actually going to come tell you this. I think it is a mixture of issues. I really do. He isn't dry. He pees sometime in the night. BUT. He pees right when he wakes up. So I think once he hits light sleep he wakes when he feels the urge to pee. So... this could take awhile. I think we are going to have to do a round two with Lyle down the road.
He napped in the car yesterday 40 min. How long is H napping now? Then he fell asleeep at about 8 and was up at 6 on the nose. So 10 hours. The same amount as he's been doing with no nap.
Chris took him in the car to go shopping again today. In hope that he would nap. The morning was rough. And Lyle said he was tired. He napped 50 minutes.
I won't be able to be on all weekend. Chris is getting a small procedure done tomorrow and the In-laws will be in town. I'm supposed to be cleaning the house right now :)
I hope everybody had a good weekend.
Oh Jean. Checked Trader Joes for bread. Since we are doing the glueten challenge. They all have honey, egg or molasses :(
So homemade bread it is. Oh, that reminds me. I need to check the library for that artisan bread.
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Jumping in as I think our family is going to have to go the same route... Thanks for this thread, I'm totally feeling overwhelmed ATM.
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I have yet to read back through this entire thread, as my refluxing little man has just recently had a flare up, horrible rash ect. and it's been terrible to deal with - which is why we're almost certain it has to be a Sal's intolerence. He also has mucous poops (either dark orange or green) TBH, past his first week of life, I can't remember him having a "normal" poop. :( At first I thought discovering the MSPI solved our problems. That was about 6 weeks ago. But about 2 weeks ago, Ds2 started to get a small bum rash, that's since intensified drastically, and the past week his reflux symptoms are worse then ever! :(
We don't medicate his reflux. I feel like medicating it would be just masking the symptom and not treating the cause, esp. if it's intolerence issues. I do give him Colic Calm when he's really bad (a homeopathic gripe water)
I'm completely overwhelmed ATM. DH read over the symptoms of Sal intolerence and it seems to be exactly issues faced within our family. Hypothyroidism (MIL, my mother & myself - DH has symptoms of it but is not medicated for it), IBS (my mother), endocrine system issues (MIL, DH). Even more recently I realize I've been giving Ds1 Ibuprofen since he's teething molars/k9's, and he's started to do this bizzar thing banging his head multiple times on wall ect. - That was also a symptom of Sal's!!! I couldn't believe it!
I'm sure I'm going to have LOTS of questions. I am going to be sure it's not gluten or eggs - so I will go completely off of those first. But in the meantime I think we're going to figure out our plan of attack on Sal's., b/c I think we'll have to start that sooner rather than later.
Quick ? - I know for sure Ds2 is MSPI, so on the Sal's diet I will have to be sure to avoid all dairy as well, right? It will still work if I stay away from dairy I'm assuming.
Also, my thyroid medication is essential ATM (although I've been trying to get off of it..) but I know it's got colourant in it. What does one do in that situation.
We eat an all natural/organic diet as it is. I'm assuming we can continue that while doing the RPAH diet... although I'm afraid this will get expensive :-\ Since discovering Ds2's MSPI I've only been eating: water, most fruits/veg, quinoa, brown rice, Oatmeal, eggs, organic meats, olive oil. I take a calcium supplement, fish oil & PNV. That's it. So once I rule out eggs/gluten we'll most likely start the RPAH diet within the next few weeks.
Last question - I did start Ds2 on probiotics (by Klaire labs, dairy, soy, egg, gluent ect free) they are binded with chicory root - is that ok to still give him. I know his intestines are in complete distress and I'm trying to balance it out.
I feel somewhat defeated. DH & I strive to live a healthy organic lifestyle, yet we're still faced with this?! Unbelievable - even "healthy" natural foods are causing issues. We've mostly managed our lifestyle ourselves, but will most likely start seeing a naturopath now. It's difficult, b/c in Canada w/ DH's benefits, our healthcare/prescription meds are covered. Naturopathic medicine for the most part is not. ::)
Anyways, thanks again for the support, my mind is just spining!
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Argh, Sher. I forgot to come back and mention the honey in that bread. I am so sorry! I meant to write.
As for nap, he is still doing about an hour to an hour and a half (but I do 1.5 when I know we are heading out to swim in the evening or have a pretty physical evening and I don't want him to get tired/grumpy). Night is from 8:30 (ish; he will sometimes not fall asleep until 8:50 if we are running late) to 6-6:30 (6:45 rarely). No nap makes the day so short, and we love the long evenings right now. It won't be long before daylight starts to dwindle a bit more...
As for bread, I did make that bread recipe that I posted quite a ways back from allrecipes.com. Then I tried the bread maker, but it took too long in my opinion. Then I started the artisan bread in 5 minutes a day. My mom had also picked up a gf cookbook for me at a garage sale, but I didn't like the first couple of recipes. I just can't get the taste for gf, I think. It will be trial and error, but the artisan bread stuff is quite a bit quicker. But I had a hard time making sandwich type bread.
Lots of hugs, Rebecca.
I have to run for now. XXXXXXXXXXXXXXXXX
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Hey Jean - this article recommends the book you talk about nourishing traditions, it's a good article about the juice industry in America: http://www.foodrenegade.com/secret-ingredient-your-orange-juice/
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Rebecca - the whole point of the RPAH diet is to work on ruling out egg, gluten etc.
So if you start on the strict diet, which it sounds like you need to. Then go you egg, gluten, egg, soy, milk free (and also low natural chemicals: salysilates, glutamates, amines) sorry about the spellings. Then one at a time you add the stuff in.
The most expensive part is when you have to buy gluten free. At least in the states, gluten free stuff is very expensive. There was a cost for stocking up on the basic stuff that the diet requires. But, now I think it's maybe just a little more expensive then our diet before this. Since we were trying to eat healthy anyways. So what I'm saying is you don't have to rule the other stuff out before you start it. Starting the diet will help you rule everything out with a more systematic and complete way.
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Thank you for the advice Sherry lynn, I REALLY appreciate it. :) How long did you find it took to notice a difference as far as symptoms went when first starting the diet? I'm assuming your body will have to detox first and it depends on the severely of the intolerence? Could I see a faster improvement in Ds2's symptoms since he's so young? So far I've been egg/gluten free for 4 days (in addition to keeping dairy/soy out of our diet which we have done for over 6 weeks now) His symptoms are still worse then ever since this most recent reflux flare/rash ect. :-\ I haven't gone on a low/mod Sal's diet yet though. I will have to stalk up on the foods tomorrow.
I looked up the Chicory root that is used in Ds2's probiotics as a binding agent - it was in the "extremely high" Sals category :-\ So we've stopped those. What brand probiotic do you ladies use that is compatible with a low Sal's diet and is also dairy/soy/gluten/egg free?
Since I am tandem nursing I am a bit worried about my supply. Is anyone else here still Bf'ing while doing the RPAH diet? Did you notice a difference?
I actually just read that article about jucing not too long ago - facinating stuff, isn't it? Funny you posted it Sherry lynn.
Also, do you find your naturopaths are well versed in this sort of thing? I'm hesitant that they won't know what I'm talking about.
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Eloys and Kirry are much better to answer those questions because there LOs were young when they first started the diet and they were breast feeding.
It can take the body a while to heal sometimes and I do know that it takes AT LEAST two weeks to hit base line when you start the diet it takes even longer for some.
Going low sals is one of the hardest parts because it really limits fruit and veg choices.
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Super interesting article, Sher! THanks for posting it. :-) How is everything going? When is your family arriving? :-) I hope the extra hands will helpful. XXXXXXXXX
Rebecca, I agree that it can be hard to see exactly what is happening with reflux meds. I think each parent has to do what they feel is right, and reserve your right to change your mind down the road. It can be overwhelming. I wouldn't stop your meds without talking to your dr. Can you get a referral to a dietician or allergist?
H wasn't medicated until 5 months. Things were just to erradic and his discomfort was so high (despite being on hypoallergenic formula even before using meds for the reflux). It can be so dog gone hard to figure it out, so hang in there.
Perhaps some others over in crc have mentioned that reflux can be due in part to immature anatomy of the lower esophageal sphincter. Some research suggests that it doesn't completely mature until 18 months. If that is a factor, it still may skew your results, as it can intermitantly relax allowing tummy contents in to the esophagus (or even higher causing other issues). We have a low tone issue that may have been a factor in H having a weaker lower esophageal sphincter, and it took an occupational therapist to notice the external signs of his low tone rather than the dr or gi. And the thought is that the low tone may have been an internal factor as well. My thought in adding that is just to mention that food intollerance/allergy could certainly play a factor, but there may be other contributing factors in to the mix. And there could be other possible anatomy issues that can be a factor as well, unless they have been ruled out.
Lots of hugs for all the moms here going through this. XXXXXXXXXXX You truly are superheros for your LOs. This is a challenging road to be on.
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Hey Rebecca,
I started the diet when Ds1 was 3 months old. I was on it till he was 13 months. It took us 6 weeks to get to baseline, for babies the dietician and allegist I saw who are well versed inthis diet say to allow 4 weeks for baseline. My supply was not affected, they say the quality of your milk isn't affected.Although I noticed after expressing that it was less fatty. Not much i could do about it though except try to eat as much fresh salmon as the diet allows - (moderate amine) and eat more of the allowed oils, unfortunately none of the oils are what I class as heatlhy oils :-\ The diet really is a last resort to sort out chemical food intolerance, it is not an ideal diet.
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Thank you for all the wonderful info and support ladies. I've really needed it.
So we are now on day 3 of eating low/moderate Sals. It seems almost impossible, but I think we're turing a corner already!?! :D Ds2's rash is almost completely gone, his reflux symtoms are gone, and we had our first bright yellow, seedy mustard poop since I can remember!!!! :D Is it possible he only has a mild intolerence to Sals? I'm hoping he will be able to grow out of it, but the Diet isn't all that bad really. It's just changing what we used to do. Especially since we always used to eat very rich antioxident foods (such as avocado and olive oil ect)
I was able to do a full grocery shop to fill the kitchen with low/mod sal foods (and of course I"m still dairy,soy,egg, gluten free too at this point). I'm doing as you suggested, Eloise. Eating mostly all low Sal foods, and one meal/day eating moderate Sals. (I loved the idea of fresh Salmon btw - I was worried where I would get my good fats from!)
I'm also finding I have more energy. I've also lost 4 lbs in 3 days, without even trying. I suppose the Sal intolerence does run in our family. The toxins must just gradually build up in our systems and manifest themselves in other health problems (like my hypothyrodism)... this journey is so facinating. This may sound bizzar, but I'm almost happy that Ds2 was having some problems, or we may never have even considered Salicylates as being an issue for us.
I'm now wondering how I'm going to tackle solids with Ds2 down the road. What did you do Eloise? I'm thinking I will have to only introduce low Sal foods for the first little while with him and go from there? What are your boys able to eat now? - should I make another post about this? (LOL - I get off topic easily sometimes)
Also, what do you ladies eat for breakfast? I'm finding that the most difficult meal of the day, especially since I'm still not eating eggs yet. I did get some Quinoa flour and made Quinoa pancakes this morning. They were pretty good, but I can't see myself eating them everyday.
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We are eating eggs yet either. So I also find breakfast hard. But, I've been less hungry in the morning. So that helps.
I usually grab a handful of raw cashews to eat with my coffee. Then a little while later I have some puffed rice with rice milk.
So glad to hear things are improving. And like you GF pancakes/waffles. Or maybe a slice of GF bread with homemade pear jam.
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how's it all going sherry?? passed/failed any more challenges yet??
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We are on sals right now. However, he is finishing up teething, which seems to bother him. The last corners of all the molars are coming in. I've got a head cold, or bad allergies, so I figure that's upsetting him too.
He was up a good bit of the night, night before last (seriously like half the night) I thought he had an ear infection, but he seems better (no real fever or anything) so keeping an eye on it.
So I think we will be keeping at this one for a little while. Is it ok to do it longer than 7 days if we are unsure?
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For breakfast, I ate Bob's Red Mill (US/Can brand) of "rice cereal" every day for months. It is grainy hot cereal and you make it up like cream of wheat or something. I even ate it for dessert/snack at night a lot too. If you can find 'safe' baby food, you might take to eating that too!
Good luck, Rebecca. It took ridiculous amounts of elimination for us, but we did get a "healthy baby" back. I started when DS2 was just 3 weeks old and now he is nearly 15months (and I'm still BFing!). Mostly, just hugs. It is so hard, especially when you are just sorting things out. One treat I still eat is DF margarine, mixed with sugar into a paste and spread on a rice cake. :-*
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Thanks for the breakfast suggestions. :) I found a tapioca/rice bread today that was actually pretty decent too.
WOW Shannon - you started when your son was 3 weeks! :D Amazing. How did you pin-point it to a Sals intolerence that young? Yay for still bf'ing!! :D How long did it take for you to see an improvement in Ds2's symptoms? Was he getting mucous poops for a long time? Did your first ever show signs of this intolerence? I would love to hear your story Shannon...
We ended up with some really mucousy diapers again today :( I felt a little discouraged, but I guess his little body is still healing too, right? On the plus side, his reflux symptoms are still gone and he still seems much more comfortable, so that's good :)
I went to a ND today and it was terrible. I was so dissapointed. She had no clue about Sals, or any intolerences in babies for that matter. ::) Then I tried to talk to her about probiotics since I'm desperately trying to find some that will be compatible for Ds2. The first ones she gave me to look at had milk in them!! argh, and I told her Ds2 was MSPI! The second, she said had nothing but probiotics in them. I asked to look at the bottle and they had FOS in them. I'm not comfortable giving that to Ds2 either. So after a short while we politely told her we didn't think she was a good fit for our family. I was really discouraged this afternoon. We do have another consultation with a different Naturopath on Monday. He comes recommended by a friend, so here's hoping he's a better fit for our situation. :-\
This really is full of ups and downs, isn't it?
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Is it ok to do it longer than 7 days if we are unsure?
for sure sherry. you have to take it out again for other challenges anyway so it's certainly not going to hurt being on it longer. give it two weeks if you need, should hopefully see something more conclusive by the end of that time??
hugs rebecca, it can be hard to get good help in this area. one thing to consider with the probiotics is if the dairy component is lactose, then your LO may be ok on it. my LO is mspi too but was okay on lactose as it is the milk sugar not milk protein. treat like any other food challenge if you think that could be suitable.
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Sher, I hope you and your boys are doing well today. Have you had a chance to read anything from the book, yet? I still need to make the order...
Such good news about the refluxing, Rebecca! I hope the poos clear up soon.
It can be hard to find a dr who is the right fit. I hope the next is better. I have been to two NDs and was disappointed with both experiences. The chiro was also a disappointment. Heath's second gi was great, and he was aware of salicylates. He couldn't help much with foods, but he gave us two leads for allergists. (He didn't want us to go to just anybody.) After the apt with the first allergist was a bust, I asked the appointment lady if she could find out if the second allergist was aware of salicylates. I called a couple of days before to see if she had heard back from the allergist, otherwise I was going to cancel (I told the apt lady that when I made the apt, too). We really liked the second. Hugs for the disappointment; it takes a bit of searching to find a great dr, it seems.
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Eloys & Kirry - how do you do the egg challenge?
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sherry, i'm not sure what quantity an adult needs to eat, i'm guessing start with one egg every day for 3 days then double it for a few days. for kingston, i gave him a whole egg, i served it beaten with a dash of rice milk and fried, cut into small strips and he gobbled it up. did it for 4 days straight.
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one egg yolk a day for 3 days, then one egg a day for 4 days. Just incase they can only tolerate yolk.
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Thanks. I'm really scared to do this challenge. But, I need to get it done before the MMR.
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you can hide the egg on a pancake or something, that's fine too
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I think he is ok with egg in stuff. As I used to make waffles with egg and he was fine. So I'll do the egg yolk first and see how that goes. He had the really bad reaction almost a year ago, so maybe he has out grown it. I hope.
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good luck, it would be shame to not be able to egg such a nutritious thing, in my mind these are one of the most important foods to retain in the diet.
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good luck sherry!
elo, i swear we have a diff dietician sometimes :P she told me to do the whole egg at once and only try yolk separate if failed. tho i guess we werent expecting him to fail egg :-\ i know with hunter i did yolk first, egg white after 12mths as that's what everyone did then.
well just to throw a spanner in our cow's milk challenge - kingston has roseola. talk about timing!! and i thought we were clear because his teeth are all out ::)
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oh no you are right hun, the dietician said whole egg at first, but the naturopath said to try the yolk first. I just took the advice that I wanted to hear and went with it LOL.
OMG poor Kingston!!! What will you do about the dairy then!!!!!
Now I don't think you would want to see the paed I just saw for Kai, - he said no meds wean, gluten or caesin until at least 2 for Kai, given how sensitive he was a how he reacted when we tried to introduce those things.... and given that it took him 3 weeks to come good after the first failed meds wean at 12 months.
He said there is new evidence to suggest that wheat causes something like cell membranes in the gut to become porous and can lead to leaky gut, and that no humans really agree with wheat, we all only "tolerate" it to varying degrees. Great. Some times too much information is just no good.
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Super hugs gals for the trials ahead.
Sher, I hope everything goes ok for Emory. Nervous, and sending lots of vibes for it to be fine. ~~~~~~~~~~~
Hugs for the roseola, Kirry. How long does it take to clear. XXXXXXXXXXXXXXX
Hugs for the wheat and caesin, Eloys. I remember reading that for some, they recommend two weeks. That was when I was reading about EE (but I don't think it is particularly for those with EE). It sounds like a good idea. Nervous for you to go through it again. XXXXX
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thanks for the hugs!!
One more point - I forced the paed to estimate when Kai would grow out if it given the experience he has had with other kids similar to Kai and he said probably 5-6 years old :o :o :o :o :o I was not mentally ready for that. I was still thinking along the lines of 2, or 3 at worst case.
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He said there is new evidence to suggest that wheat causes something like cell membranes in the gut to become porous and can lead to leaky gut, and that no humans really agree with wheat, we all only "tolerate" it to varying degrees. Great. Some times too much information is just no good.
Have you been reading Liz's thread about grains. Really scary! I love them to much to omit them though.
Good Luck with the egg Sherry. I would def do yolk first. Olly is mildy allergic to yolk and hugely allergic to the white!
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As a matter of fact, we've figured out all grains (along w. dairy) seem to be our main issue. Being on the low Sals diet and ommiting the common allergens, I realized the days Ds2 was having tummy troubles were the same days I ate Quinoa. :-\ He seems fine when I eat rice but I've decided to ditch that too...
I've introduced egg yolks back into my diet. This is day 2 and so far no issue in either myself or Ds2 :) yay!
After figuring out grains are a big problem, I'm not totally certain that Sals are.. ??? I'm still going to be careful though...
We're actually switching to doing the GAPS diet. Its very similar to the paleo diet. No grains, no refined sugar - allowable foods are basically fruits,veg,meats,nuts, fermented and unpasturized dairy (if not intolerent) It's purpose is to heal the gut w/ probiotics and foods the "paleo" human diet would suggest we are designed to eat anyways. http://www.gutandpsychologysyndrome.com/wp-content/uploads/2009/11/GAPS-Diet-Foods.pdf Facinating stuff....http://www.gutandpsychologysyndrome.com/gaps-diet/
I finally found a good naturopath that has experience with this sort of thing. She also suggested DH and I do an IgG blood test - has anyone of you done it? It has 96 common foods and tests for food sensitivities. Her thought is that if we can figure out what DH and I are both even mildly intolerent to, it could help pinpoint anything else that's bothering Ds2. The downside is that it is expensive - $250/test.. so $500 for both of us :-\. It is something we'd like to have done. I think I'll keep going with the trial and error of ED for a bit while we save up for it.
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He said there is new evidence to suggest that wheat causes something like cell membranes in the gut to become porous and can lead to leaky gut, and that no humans really agree with wheat, we all only "tolerate" it to varying degrees. Great. Some times too much information is just no good.
This is exactly the thought on the GAPS program as well... and the thought is with this leaky gut, the toxins can cause neurotoxicity and all sorts of neurological disorders such as add, adhd, depression, bipolar, ect ect ect... It's scary stuff. Lots of hugs sweets!
ETA - this is the article/video that first opened my eyes to the leaky gut issues and abnormal gut flora faced in babies/children http://articles.mercola.com/sites/articles/archive/2011/07/31/dr-natasha-campbell-mcbride-on-gaps-nutritional-program.aspx?e_cid=20110731_SNL_Art_1 It just blew my mind, especially knowing that poor Ds2 is having so much tummy troubles... I guess it just motivates me to keep moving forward in this journey for the sake of his health.
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Interesting about the gluten. Does it mention if sprouted wheat is easier to digest? I know I read that in Nourishing Traditions.
As far as the testing, I am not sure what to suggest, Rebecca. I know a mom who did it for her son and referred me to the second nd we saw. She said she saw results with her son from a behavioral issue stand point.
I went to that nd for a visit. In the visit, the nd suggested I do the allergy testing for my acne (in addition to doing other testing totalling $1200). I had said that I had thought I had some similar testing done, but the nd had said she could only use her "own" tests to make a diagnosis, ect. I brought the info to my dr, who said that a lot of it I had been done already (some hormone testing, etc). I just didn't feel right about it. I didn't like that the nd that I saw was also completely sarcastic about general mainstream medicine. The mainstream drs I see like my reg dr are not opposed to the alternative medicine industry. I tend to be pretty open and ask for their opinion (because I really like my dr and H's dr despite it taking a long time to build a decent relationship with her ;-). I think it should be ok to follow up with your reg dr, if it is a dr who's opinion you would value. Read about the validity/reliability of those tests before you make a decision to drop that much money, though.
I know this is a bit off topic, but...to follow up on my acne; I read a ton about skin care trying to figure out my son's skin issues. I fixed the acne issue myself. ;) 8) Avoiding certain foods would have done nothing for it. And the last dermatologist I saw over a year ago suggested using accutane or a combo of antibiotics/creams. I liked the dr, but wasn't particularily happy with those options. I have an apt to go back there soon (over a year later) with clear skin. First time since I was probably 14. ;D ;D ;D
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thanks for the hugs, apparently worst is over now rash has broken out, will clear in a couple of days. spoke to paed and decided to leave cow's milk in til appt on thurs and discuss from there. i can see that we'll prob have to stop and try again in a few weeks as i think it's ok, but have a question mark over it IYKWIM.
OMG elo!! 5-6yo!! i had thought 2yo for meds for kingston and 3yo for sals, but realistically he is sooooo sensitive to sals that it could well be longer. what brand butter do you use? had been using nuttelex up til now but figure he'll be fine on butter since has yoghurt and cheese now, but realised our regular butter has preservatives in it >:(
want to hurry up and get this cow's milk done so we can do proprionates, colours, sulphites, etc. dont imagine that he will every consume these on a regular basis but i want to know how careful i need be or not when at other people's houses, eating out, etc.
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Kirry, hugs for the dairy. I hope it is fine the second time around (if you have to go a second). Our organic butter has organic sweet cream and lactic acid. Is the lactic acid a no?
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I buy the hard blocks of organic butter and keep in a butter procelain container on bench top so it is nice and soft all the time. The one at ALDI - own brand is the cheapest, the one at Woolies "Harmonie" is double the price! I am happy to pay the extra for the organic butter for all the nutritional benefits.
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:-) I keep our butter on the counter to keep it soft as well. My mil always says that her mom did the same (but she doesn't) because they had a neighbor that always commented on the dusty butter, lol. I just put a cover over it on the counter to keep the peace. :-)
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I keep mine on the counter as well. I have a cute little cover dish thing for it.
Kirry I never thought about this: so we can do proprionates, colours, sulphites, etc. dont imagine that he will every consume these on a regular basis but i want to know how careful i need be or not when at other people's houses, eating out, etc.
Uggggg...... I think I don't want to think about it really, does that make sense? Lyle already came home from his first day of school telling me that he had gold fish at school. Sigh.... he so can't have gold fish. And then I was trying to feed him lunch for school (he goes at 11:30) and he said.. "no, I eat at school." So I said, really, "what's Ms. Beth going to make you?" Bacon he replies. Sigh. I guess I am going to have to have a talk with the teacher. I was all geared up to do it, but then chickened out.
Kirry, Is your little guy feeling better now?
Rebecca, I just recently heard of the Gaps diet. Funny that you mentioned it here. I was telling a friend about RPAH and she said, oh I have a neighbor who does GAPS. So I looked it up. I wish you some success with doing that.
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I sympathize with you Sher. I cringed as the slps at the college were feeding him pre packaged cookies and dorritos. They have snack at prek every day; a different family is supposed to supply it for the whole class every day. The teacher said I could pack one for H, but of course he has to be the different one EVERY day. I will have no idea what snack is exactly. If I knew, I could plan certain days to bring something. SIGH. I am still deciding what to do. XXXXXXXXXXXXXXXX
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Rebecca, I read that link and that sounds very very interesting and completely plausible. There is alot to be said for abnormal gut flora and also fermented foods, I am really on a steam train in that area of diet and nutirition at the moment. We soka all our grains before eating now so they are fermented, I feel this is soooo important for preserviing our gut. And i am coming to understand that the modern diet is really lacking in many areas and not good for people at all. I think fthe anseer for us as a family is incorporating failsafe eating with wholefoods eating. Failesafe diet alone is too "white" and does it emphasise the need for whole foods or fermented foods.
I am about to embark on a 4 week anti-candida program (for l
ong term gut issues) and it makes we wonder if Kai has inherited my crap flora has set him on this path of food sensitivity and compromised digestion and immunity. :-\ anyway we are about to get his stools analysed for gut flora so lets see what it brings!
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Interesting Eloys! I would say we are kind of a blend of failsafe and whole foods. I think the more you read, the more you tweak and tune up what you are eating. There is always something to learn! Curious to hear how the stool testing goes. I know you have used probiotics. Is that not enough to keep things heading in the right direction? Do you feel that failsafe is too white meaning by color or by grains? What grains are you fermenting? Sounds interesting.
I would say that what you put on your skin can be equally concerning in comparison to what you are eating, as well. Perhaps others outside the US have a lot less to worry about than us in the US. I have read "The Body Toxic" and "Toxic Beauty". It suggests that what you apply to your skin doesn't go through your liver, while what you eat does. One of your basic natural defenses is completely bypassed with your beauty products, soap, shampoo, deoderant, shaving products, perfumes, etc. What goes on, goes in; your skin is so permeable. If you live in the US and want to check out the safety of your skincare products for you or your children, go to http://www.ewg.org/skindeep/ . I know that skin deep isn't perfect by any stretch, but it is the best we have in the US. Most chemicals are allowed untested in our products, rather than the industry having to prove they are safe before putting them in products. People have the illusion that if it is on the market, it is has been reviewed and marked safe by the fda; very not true. Drugs have a different scrutiny than cosmentics. It really makes me cringe to picture moms and babies being slathered up in these products.
Enough about that, and sorry to be off topic. Prior to reading a lot about skincare, I think that I focused primarily on the food/health connection; now I see that I really need to look a bit more broadly. No more mention of that here. :-) I just want to make sure moms here are equally atuned to what goes on you and your little bubba's skin. XXXXXXXXXXXXXXXXXXXXXXX
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Jean, ugh! Another thing to think about but thank you so much for raising the part about skin. How important! That has been far off the radar for me, only recently I switched to organic skin products, but know knows if everything in them is safe! And also I am a hair dyer from way back.
I mean "white" as in refined high GI grains and white tasteless veges :P It is not meant to be a health diet of sorts anywa,y it is a diet specifically to test food chemical intolerance. So it is the way it is for very important reasons, I don't want to take that away from the diet.
The stool testing covers anaerobic bactieria and yeasts, even though he has been taking probiotics apparantly it doesn't fix all the imbalances, Like if you are low in something, just puts good stuff into the gut. And also it can't get rid of yeast over growth.
For the grains one example is oats. I soak whole oats overnight with one tablespoon of yoghurt and rinse in the morning before cooking. That way they are soaked and fermented before cooking. I get all my info from Jude Blereaus Whole foods for children and also Sally Falons cookbook and reference "Nourishing Traditions".
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I get all my info from Jude Blereaus Whole foods for children and also Sally Falons cookbook and reference "Nourishing Traditions".
LOVE LOVE LOVE LOVE this book! I ordered it when I ordered the GAPS book actually. I've been making chicken soup stock with organic chicken bones like it's going out of style ;) (and freezing extra for Ds2 when the time comes to introduce solids)
I would agree about the "white" aspect of Failsafe, that part does throw me off a little. :-\ But I agree w/ what you are saying Eloise, it's done for a specific reason to rule out the chemical sensitivities.
The thing I find contradictory in the GAPS diet to the Failsafe plan, is that the theory in GAPS is that all the "white" stuff (grains, refined sugars ect) feed the bad bacteria which is what's causing the holes in the gut (or leaky gut). And it's those holes that allow food proteins, chemicals ect. to pass freely into the bloodstream causing actual intolerences/sensitivities, kwim?
So we've decided to ditch all the grains and the sugars. (as per the GAPS plan) in the hopes to heal the gut. Replacing the bad stuff with the good I guess you could say. We are all taking good quality probiotics and I have some homemade Sauerkraut fermenting as we speak. I've also started making my own yogurt w/ goats milk for Ds1 and DH. It's a little runnier then "commercial" brands, but oh so healthy, and mixes very well with fruit.
I know it's kinda off topic for this thread, but I'm learning so much through this process, and I agree with what you say Jean, you have to tweak the plans to find what works best for your family. I'm still very thankful I have knowledge of RPAH diet so I can be more aware of the chemical sensitivities incase I find those cropping up along the way.
I'm on the skin database quite a bit! :D That's a great link!
I think the stool testing is a great step forward Eloise. I'm going to keep plugging along on GAPS for a bit, but would like to do a stool testing for Ds2 down the road to see if we've "cleansed" his little gut. Its a little pricey here - about $300, but worth it, IMO.
Also Eloise, ikwym about wondering if you gave your babies the "bad" flora. :-\ The ONLY difference between my 2 pregnancies was that with Ds2 I had to go on anti-virals for a short time (against what I wanted to do, but I really had no choice...) I never had to with Ds1. Anyways, knowing what I know now, I wonder if I damaged the good flora and Ds2 got quite a bit of the bad - thus creating the issues we are experiencing now ??? Well, I can't change it now but either way, I'm glad I'm now becoming educated about all of this so we can take steps forward.
I'm noticing huge strides in Ds2's health (yay!!).
Oh, and I can eat eggs again - another yay!! Passed that challenge!! :D
ETA: If anyone was interested, here's the basics of what we are following. Again, different from RPAH, so off topic, but it could be helpful to combine theories... http://www.gutandpsychologysyndrome.com/gaps-diet/
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The ONLY difference between my 2 pregnancies was that with Ds2 I had to go on anti-virals for a short time (against what I wanted to do, but I really had no choice...) I never had to with Ds1. Anyways, knowing what
Hmmmmm..... This is exactly true here as well!!!! I actually had to do two. While pregnant with DS2. Although. I actually think DS1 is more sensitive to foods than DS2. But, I think his are more hidden reactions and oooohhhh so much harder to "test" regulate ect...
Elo - do you give those grains to DS1, is he ok with them since they have the yogurt over night, does it mostly wash away so it doesn't matter?
I need to get these new books. But... I still haven't started the food chaining book :(
Jean - that's so funny that your brought up all the skin stuff. It all went out the window when we embarked on this diet. So I think it IS VERY relevant to this link. I think people just skip that part of the ED because it's pretty hard to deal with. I mean.... seriously these deodorants don't work in the south. Any good recommendations there. When I go in public I "cheat".
It's so funny. You know, Chris is in the sun all day. So switching sunscreens has been very very important for him. And Blue lizard can not be found anywhere because it was mentioned on Good Morning America. So he is using Badger. Which does not completely dissolve in the skin. He came home the other day with a "ghost" looking face. He said does it look embarrassing. I just said no. What could I say. He can't keep using what he was using before. We'll have to order some blue lizard in December when people won't be thinking about it :)
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Hey Sherry,
With regard to the sokaing in yoghurt, I just wash it off and cook for Kai.
Too funny about the white sunscreen, how could anyone take him seriously at work then :P
I found the skin stuff too hard too and didn't bother when on the ED. I really try not to use anything on the kids skin except zincoxide ointment for nappy rash if I have to or else paw paw cream for chaffed lips. I rarely wash their hair or use soap on them... just water ::)
How are you going with the challenges so far? Anything conclusive - pass / fail?
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Sher, we are using the Badger sunscreen, too. :-) California Baby also gives a white glow. Let me know what you think of the sunscreen you have on the way.
I tend to do what you do, avoid deodorant when possible. I do still have the book Toxic Beauty here. It discusses five lab tested deodorants that have no detectable levels of phthlates (p. 163): Certain Dri Antiperspirant Roll-on, Dove Powder Antiperspirant, Lady Speed Stick Soft, Secret Antiperspirant and deodorant Platinum Protection, and Soft and Dri Antiperspirant Deodorant Clear Gel. For any of the products I mentioned, check them out on the EWG's cosmetic database. If the formulas have changed since the research date in 2002, you can do a custom listing for the product somewhere, and it will recalculate the safety rating. As for their effectiveness, I can't speak to that. I have only used my old Degree deodorant about three times this summer. We are lucky the temps are only in about the 80's or 90's for the most part. And being out early and late makes it so much more bearable.
Phthalates/parabens are hormone disrupters, and some studies are showing the presence of methylparaben in breast cancer tumors. http://onlinelibrary.wiley.com/doi/10.1002/jat.957/abstract I could't find the whole article when I quickly looked. But there are quite a number of articles that pop up as well if you google. I remember hearing a speaker disregard this on npr (national public radio in the US), so a long time ago I figured it was safe. Now I am just avoiding it and not taking chances with the one body I've got. ;-) So, finding salicylate free products is half the battle (for those who are sensitive) and finding safe products is another. And the book also notes that aluminum chloride is a concerning ingredient, as well. It is hard to balance the hygiene routine I would prefer (shampoos/deoderants/make up/etc) and the one I think I should follow due to the lack of proven consumer safety.
Going to take a peek at that link, Rebecca. Thanks! And I am going to see if our library has those cook books, Eloys. :-)
I fixed a bunch of misspelling. I guess I was in a hurry to wake H this afternoon. Where did the spell checker go??? :-)
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I also meant to say that I read about fermenting in NT. I had to return the book before getting to try a bunch of it.
My family also makes homemade sauerkraut. It is really an art my grandmother has handed down; simple ingredients, but a bit of tinkering. :-) My mom still watches over it for weeks until it is ready; I better learn at some point. :-) The deer ate all my cabbage this year, so I have none to contribute on kraut making day. BOOO!
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I need to look in to those cook books too :)
Well.... With Lyle, this will def. be something we have to come back to as we get the food under control for him. His diet is just too limited and we are working really hard on that with the SLP and will start working on it whenever his new OT starts. His food and eating is a pretty emotional topic and I guess it's something I should write a post about it down the line.
I feel like since doing the diet we have not had enough fruit and veggies in the house and that's something I'm looking forward to getting back to.
We have to get back to base-line yet again. Hopefully by Sunday and then we can trial eggs the proper way. I chickened out with Emory :( DH and I had them one day, but I ended up not giving them to Emory. I just couldn't bare the thought of a long NWing. I know I need too.
I think a low gluten diet suits him best. Since I've kept him on that we have had ZERO night wakings. One day he had quite a few cheerios again and sure enough he was up crying in pain for about 1/2. Took those back out and he's doing great. Even with me letting him have fruits and veggies. We have discovered these fruit pouch things that he LOVES. I guess I need to take them away for a few days though if I'm going to do the egg Sunday.
Interestingly enough. Most of the stuff that we know for sure are around DH. With me, Milk has really been the only thing other than tea that I have reacted to. But, a lower gluten diet does seem to suit me well also. But nothing concrete there. Just how I feel overall.
DH is salysilates Milk, Gluten responder.
Thankfully after the initial giving Milk back to Lyle he has calmed down on the quantity.
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Sher, it sounds like you are figuring out so much. I think you have discovered quite a bit for E (and for L, too); wow on the nwings ending!!!! I would be leery about rocking the boat, too. (Who wants to tinker with what is working, right?) Perhaps do it when you are ready or try something else.
When you have time(no time pressure :-), perhaps you could let me know what things you are eating to do low gluten. I don't know if you remember, but we were going to do a gluten free run. I screwed it up about three days in, and then we had an apt with the first allergist. We never did go back to it. I still have the gluten free cookbook (but didn't really take a shine to initially), and those supplies are in the pantry (if they haven't spoiled). One thing H is picky about is the texture of his preferred breads. I just don't see him going for gluten free (or maybe that is me not really wanting to give it up as well ;-).
The food intollerance and eating issues are quite an emotional topic. I have had my own fair share of teary eyed apts with a variety of specialists. It is difficult when you are giving an issue everything you have. Trying to figure what to do next is difficult. And you worry so much about meeting their nutritional/medical/educational needs. You can spend oodle of money on food someone probably won't eat (or eat enough of, so you can tell if they will/won't react to it). And then you can worry that very the foods you provide, and think are ok, are a part of the problem (especially when something works one time and then it doesn't the next). Or is it something else medically going on. And it can make you feel guilty that you aren't doing enough to figure it out, as you can spend endless money on different specialists (naturopaths, chiro, gi, allergist, slp, ot). :-( Rest assured that you are doing a great job trying to figure it out and do the best for L and E.
Ironically, you mention Lyle calming down on the milk quantity; H has as well. I am not sure why, but I have focused on offering water more often (rather than making him drink less milk).
Tons of hugs Sher. XXXXXXXXXXXXXXXXXXXXXXX
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Sher, great news, I agree you guys are finding out so much in such a short time :)
I just love that your DH is on board with all of this, and benefiting too :)
So glad you found a way to stop the Nw'ings. Gluten is no good for anyone anyhow ::) It's just a real hassle to live that life though. I have visions of the future for our children where gluten free is the norm and readily available to buy and eat, served in restaurants everywhere. I think it will be the way of the future to eradicate many of the modern diseases we have. I imagine them having conversations about the old days saying "Can you believe our granparents were eating genetically modifed mass produced high gluten wheat products, without any fermentation! No wonder they had so many diseases and gut problems!"
Having Kai is the gift that is teaching me so much about nutrition :)
We are having more NW'ings again - part teething but part food I am pretty sure. I just can't seem to accept the salicylate issue and keep pushing the envelope - these are heathly foods in every other way. I am pretty ok with gluten and dairy being off the menu for Kai, as the nutritional story to keep eating these foods is not compelling.
Jean, you have described basically what we are going through in a nut shell. :)
I feel that I am getting closer and closer to understanding everything that is going on with Kai, but it is little by little rather like chipping away at mountain of rock. :)
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I imagine them having conversations about the old days saying "Can you believe our granparents were eating genetically modifed mass produced high gluten wheat products, without any fermentation! No wonder they had so many diseases and gut problems!"
Amen Eloise!! So, so true!!
We are actually thinking about homeschooling the boys to keep our values and lifestyle in tact. We want them of course to be exposed to what else is going on in the world, but we're finding we are getting a lot of flack choosing to live organically and closer to nature since it isn't the "norm" in society. A lot of people just don't get it, and don't support why we won't give our boys candies (that I didn't make myself) or sugary, wheat layden "treats". I can just imagine how hard it will be on these kiddos in the future...I really hope the world makes some eye opening changes soon, for our health and the rest of the planet!
I hope you ladies don't mind me still tagging along. I love to read what others are doing and having success with as far as these tummy issues go. We're still doing very well on GAPS. We're all quite pleased with the program and are feeling great on it. Ds1 has had normal poops now for over a week straight :) - I think for him it was the dairy that was the issue. He's now only getting fermented dairy in the form of kefir, homemade yogurt/cheese, or the occational goats milk w/ added probiotics. Majority of Ds1's "milk" is still breastmilk though since he is still nursing. Lots of success with Ds2 as well. I'm very hopeful we've found a plan that works for our family.
Theres a section in the GAPS book on SALs actually. Its quite an interesting theory. I will try and type it out and repost if you ladies are intested in it.
I just can't seem to accept the salicylate issue and keep pushing the envelope - these are heathly foods in every other way. I am pretty ok with gluten and dairy being off the menu for Kai, as the nutritional story to keep eating these foods is not compelling.
This is what got me about Sals... since the high sals foods are sooo detoxifying and healthy. I really must type out those pages for you to read from the GAPs book on Sals...the argument is very compelling as to why one can experience reactions to them...
Thinking of you ladies xo :-*
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Jumping on here--I read the first couple pages, and then skipped to this last page. I need to go back when I have more time for the rest.
My first 2 were MSPI, but seemed ok once we got rid of the milk and soy (although DD is very spirited and I've often wondered if we cleaned up her diet, if she might not have such strong reactions to EVERYTHING.) But Henry is giving me a run for my money. We've been on the MSPI diet for over a month now, tried egg free and then testing it a few weeks ago as well--not totally sure about that. SO last Friday, I started a very strict ED--not sure how it compares to the one you are talking about, but I'm eating chicken, lentils, potatoes, cabbage, iceburg lettuce, celery, pears and apples, and rice products. So very restrictive, and I'm agree that its hard to give up the high SAL foods because they seem so healthy! I feel like my diet is terrible right now and I honestly haven't felt very good since the first day, but I'm trying to hang in there for DS2.
So I'm mostly looking for some reassurance that people did see changes in the second week. So far, his poops seem more yellow, and maybe a little less mucousy, but its still there. Other than that, he doesn't have a lot of symptoms that are obvious food intollerance signs. He had silent reflux but the dairy and soy elimination took care of that. I'm just getting discouraged that I haven't had a more obvious sign this week--I was hoping for a quick recovery (I know, not realistic, but this is HARD--I'm hungry all the time!)
Also, any suggestions for other foods I should be having that weren't necessary to eliminate? I looked at a lot of different EDs was trying to come up with something that really covered it all best I could so I could get this over with once and for all.
Thanks! You ladies seem like a wealth of info. I'd never even heard of SALs until a couple weeks ago.
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Kim, welcome, and hugs for taking the hard road, but a very rewarding one! On the RPAH diet is was able to get my son symptom free and also with reflux meds and a thickener. I did notice a big difference in 2 weeks but it wasn't till 6-8 weeks that all the mucus finally disappeared, at the 4 week mark we were getting one mucus nappy a week but it was about 50% mucus. I cut back to one serve of moderate sals , amines and glutamates per day and all the mucus went away.
Theres a section in the GAPS book on SALs actually. Its quite an interesting theory. I will try and type it out and repost if you ladies are intested in it.
That would be great! I really do know intellectually why sals are bad for Kai and about the detoxification processes that aren't happening for him and also the lack of enzymes he has to metabolise them, however I feel the trade off in vitamines and minerals you get frmo those foods is somehow worth it... I feel that maybe he is getting less sensitive - so I keep pushing the envelope!
Great that your Ds1 is doing so well. What were his symptoms before? And what is he like now with the fermented dairy? Fantastic that bubs poops are responding too. :)
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I am so glad that we have been able to add back high sals like blueberries and avocado. H eats most fruits but strawberries and grapes. He had some strawberries on monday, and his bottom flared up again. It is really like clockwork. So we avoid them unless he has a bit just to see and reconfirm they are a no. Ironically, when he did the scratch test for strawberries, it was fine?? Hard to put together everything; can drive you crazy!!!
I have another whole foods book at the library for me; however, I just picked up three more books earlier this week. I have a full night stand!
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On the RPAH diet is was able to get my son symptom free and also with reflux meds and a thickener. I did notice a big difference in 2 weeks but it wasn't till 6-8 weeks that all the mucus finally disappeared, at the 4 week mark we were getting one mucus nappy a week but it was about 50% mucus.
Wow! That is a lot of mucous. So, I don't think his worst ones would have even been 50% mucous--its a little hard to tell, but there are definite strings in there, and it varies in how much. So if his diapers are ALWAYS like that, I still need to work at it, right? And do you have the yellow, seedy poops now? That's one thing that really worries me--he hasn't had seedy poops since he was about 2 weeks old. I keep waiting to see the first curds in his poop.
So, did you wait until 6 weeks to challenge any foods? Did feel like you had some variety in your diet? I don't think there is any way I can keep up this strict of a diet for 6 weeks--I feel really unhealthy. I was trying out the extreme ED to start because I figured it had the best chance of sucess, but I can only handle eating the exact same foods every single day for so long. And I really think I'm missing a lot of vitamins and minerals that are probably important.
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Great that your Ds1 is doing so well. What were his symptoms before? And what is he like now with the fermented dairy? Fantastic that bubs poops are responding too.
Well, we originally started this journey due to Ds2's tummy troubles. I honestly thought Ds1 was "normal"... but in doing all of this research and learning that these digestive issues do run in families, I knew we all needed to make changes, so Ds1 has been put on the GAPS diet w/ us.
Anyways, Ds1 always had loose, runny, extremely messy poops. Often he had chunks of undigested food in them as well. I figured it was b/c he was still on BM. But of course after doing all this research I finally ended up tracing it back to dairy! ::) When he was little, his reflux wasn't nearly as bad as what we've experienced with Ds2, but looking back - I bet it was the dairy in my diet. Also, looking back, I realized the worst of his SA was at the same time we introduced cows milk - go figure! ::) So, in following GAPS protocol, he's completely grain, starch and dairy free and we've added TONNES of healthy probiotics back into our diet. He does very well with the goats yogurt I make and has no problem with cheese. He's also fine drinking the occational glass of goats milk w/ added probiotics. His poops are now completely normal. All food is digested, they are good consistency and he's completely regular. I used to have so much trouble with his cloth diapers b/c his poops were so messy - now it's not an issue. Yay! :D
We got the most poops from Ds2 ever yesterday - 5!! :D A far cry from the one or no poops we used to get!! He's MUCH happier too, so I really feel like his little body is starting to heal.
Welcome Kim :) I agree w/ Eloise, it's a hard, long journey - but you learn so much and the health benefits are very rewarding. I too felt extremely nutrient deprived doing low sals. Are you supplementing with a good quality multi-vitamin while you're doing all of this? Also, are you taking a calcium supplement. This can be very hard on your body. Also, I would recommend epsom salt baths. If your body is detoxifying, it helps to draw the toxins out through the skin, and you don't want those toxins lingering around in your bloodstream/breastmilk, kwim? Oh, and are you eating maple syrup? I think the sugar in the maple syrup helped me over the bumps with some of the low sals stuff. Maple syrup on cold rice was my "treat" - yum :P LOL.. but, I only did the low sals stuff for a matter of weeks before switching to GAPS, so I'm sure these ladies have more tips then I would.
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Rebecca, double yay for good poops. I couldn't imagine having a 17 months old with loose poops... nappy changing hell :P
Kim, I would not have handled an ED as extreme as yours. The pit falls of having a diet so limited as that is takes yonks to add new foods back in, every introduction is fraught with interference from sickness, teething, random rough nights, and it is hard to figure out if the food is the issue. Also you need to develpe a food chalelnge protocol, for exaomple how much to eat of each new food over how many days to ensure there is no reaction. If your ED allows you to add groups of foods back then maybe it will be easier that I think. There is also the fear factor. A baby starts reacting to food introdutions and the mucus and unsettledness comes back you get more fearful and reluctant to add more foods in. So that is why is good to start on a wider range of foods if you can.
I chose the RPAH elimination diet because it is specific to food chemical intolerance, and I knew that we had a family history of salicylate sensitivity. You start off with no allergins and low chemical. Gluten free grains are allowed. Then you systematically challenge the groups of chemicals one by one - salicylates, amines, glutamates, preservatives and additives. It takes 3 months to do all the challenges if you havea clean run at it. Now with babies that is not possible due to sickness, vaccs, teething etc. I did 5 challenges + introduction of 3 allergins an about 7 months only :( We still haven;t done wheat, and he is 17 months ;) But, I am quite confident that wheat is a big problem for him.
The diet is fully supported by our local hospital and allergy unit, there are deiticians and a comprehensive elimiation diet handbook on what to eat and charts for all the foods and chemical content and even a cook book ( you can buy online). THere are also online groups for support. I wonder if you can find a dietician nearby to help you sort the nutritonal side, just in case you get stuck on a limited range of fodos for a long time???
The RPAH diet is supported for breastfeeding mothers at the moderate level, I was able to eat about 20-30 foods from the get go. This is partly the reason that it took 6-8 weeks to stabilise, I needed to cut back on my moderate level chemicals a biti n order for him to ok. I started the first challenge after 8 weeks, it was amines, it took 7 days and he just passed. 3 days later i did sals and he failed within 24 hours :(
Definantly get on 1200mg calcium per day and look at what you can do for good fats. I had to be on canola oil and rice bran oild for some months... yuck! But better than reacting to sals. I ate salmon from the beginning though for good fats. As soon as you think you have reached a stable baseline, you can start to challenge new foods.
We did get seedy poops back for a while bit when he hit about 4 months old, they weren't very seedy anymore. And then of course at solids they changed. I think the main thing is that the poops don't contain mucus, the seeds aren't essential. Did you read the sticky on food intolerance? - there are heaps of links to explain the RPAH diet in more detail there.
http://babywhispererforums.com/index.php?topic=189899.0
Hugs, it's a tough gig, but youa re doing great already... a steep learning curve too!!!!!
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I feel like I've learned so much in just the last week. I jumped on this with limited knowledge because I just wanted to hurry and get it overwith, LOL. Probably should have prepped a bit more, but I'm doing okay. I think I am going to add back in some foods that are low in the chemicals and not common allergens. My gut says that he most likely has issues with chocolate, gluten, and/or corn because my diet had a lot of those in it just before I started this, when things were getting bad inspite of being off egg, dairy and soy. But it could also be a chemical in those that is the problem, since it looks like they show up on lots of the lists.
I really should probably talk to a dietician, but it seems like our country is a little behind on a lot of this food stuff and I don't feel up to the challenge of searching out one that will know what they are doing, IYKWIM? I could see them brushing this off because Henry's symptoms aren't all that severe. But I just want to know what is bothering him, esp. because they more I'veread, I'm now convicnced that we should limit the chems for our other kids too and see if their behaviour improves. DD has always been difficult to handle and we've brushed it off as her being spirited, but I think it would be worth the try. Just have to convince DH now.
So, fish is okay, even though it has amines? Is it only fresh fish thats ok? No canned? How about frozen? I could use another protein source. . .
I am going to get calcium and probably a vitamin this weekend. I hate to have to get my nutrients that way--it goes against everything I really believe. I've always tried to eat really healthful meals so I was getting a range of foods that would cover the basis (and then also ate a lot of desserts, but that's another issue), so eliminating all these "healthful" foods for me is rough.
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I really should probably talk to a dietician, but it seems like our country is a little behind on a lot of this food stuff and I don't feel up to the challenge of searching out one that will know what they are doing, IYKWIM?
Yes, I completely understand this! I've seen 3 ND's so far. The 3rd was the best by far, but I'm still not completely satisfied. It's a rare thing to find and you really have to do so much research. I know in Canada we do seem to have many more ND's then the States from what I've heard others say, so I can only imagine the challenges for you.
But I just want to know what is bothering him, esp. because they more I'veread, I'm now convicnced that we should limit the chems for our other kids too and see if their behaviour improves. DD has always been difficult to handle and we've brushed it off as her being spirited, but I think it would be worth the try. Just have to convince DH now.
You know, I always thought Ds1 was a "normal" kid and thought certain traits/behaviours were simply due to temperament. Now that we are all on our gaps diet, I can truly say the change in Ds1 has been quite dramatic. He has less "meltdowns" and is just a happier kid overall. (not to mention the poop improvements :P )We all seem to have more energy and are happier, including DH. TBH, I find it does have to become a whole family thing, b/c if your children see DH eating something they aren't "allowed" to have, it can create a bunch of problems. We feel we need to lead by example, so by us changing our habits, the kids follow suit, kwim? Mind you, it's probably far easier for us to make the switch since our boys are so young. I couldn't imagine doing it with a child who's that much older and is used to the foods they now aren't supposed to be having.
You're doing an amazing thing for the health of your family hun! xo :-*
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Before I forget Jean, I'll answer your question about gluten free. When we were gluten free we made a lot of the recipes in the Allergy friendly book. Some were good, some not so good :) I'll type some of them out for you if that would be helpful. Chris really liked his pear/onion muffins :) Now, we have tried a few of the Trader Joe's breads, but Lyle won't eat them because he can see the parts of the wheat bran :( so he has gone back to not eating ANY bread. Oh duh, that's not gluten free anyways. Since you can have egg, have you tried UDI's bread. That's what I gave Emory often before being on this diet and it's OK. Not great. But, better than most options out there. Lately I've been making pre-packaged bread. I don't think that's 100% failsafe
Also, I didn't really realize there was anything "bad" about the different gums because I haven't read any of the readings you guys have and it's in both the Allergy friendly book and the Failesafe book. I actually paid an arm and a leg for just a package of xanthum gum. Which we haven't used much off. A little goes a LONG way.
We do rice noodles with the meat sauce recipe that is in the allergy book. It is actually pretty good and we have it often. I'll give you that recipe if you like and it's super easy. Do you have any citric acid?
I like it with pad thai noodles, but Chris likes it with the rice noodles that look like spaghetti noodles. I'm sure you can get them at your healthy food shop, I can also get those "specialty noodles" at the local kroger. I don't know if you have a kroger owned store near you. They are all of the US but with different names. They are actually really good with the gluten free stuff. There are a ton ton of choice.
We eat white potatoes, white and brown rice, quinoa (and since we do eat some some gluten now, occasionally couscous to change things up a little :)
We tried a chickpea fritters recipe. They were ok, but really dry. So you'd probably have to play with that if you want it.
Am I missing something. If I am ask me. Elo and Kirry can chime in on that as well because they are Gluten free too. I also need to go through the menu link. We are sort of getting tired of the same stuff.
Oh, I'm glad you brought the milk up. Apparently we are having days where it's still a little bit of an issue. I also bribed him one day with Ovaltine milk if he took his vitamins with out the full on thrashing nonsense that we were having and now he want's ovaltine ALLLLLL the time. Which he's not really supposed to have. AT ALL.
Why is being a mom so hard sometimes. Sigh.
And. In food chaining it does say to limit the milk to 20 oz a day.
Kim welcome. I hope you find some of this information useful. Cutting out all those healthy fruits and veggies is probably the hardest part. But, I just keep telling myself it's not for forever.
I would also love to see more info on the Salysilates. (sp)
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Sherry Lynn--I see you're in the U.S. also--not sure who else doing this is, but I have a question about where you get your meat. From what I've read, it can't be aged, right? Even the cow share we bought last year was aged (I guess that is typical with red meat). I can order chickens from the same farm that would be fresh slaughtered (and cost a lot more than what we usually pay), but I'm wondering where to get anything else. I was all excited to add fish back in, but I have no way of getting fish the day its caught, so I guess that is still out for now.
Still feel like I'm learning a lot. . .
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I honestly can't seem to find the time to type all this stuff out so here's a quick scan. Hopefully you can read it alright. If I'm not supposed to post scans here, please feel free to delete.:)
It's a section from "Gut and Psychology Syndrome" By Dr. Natasha Campbell McBride : http://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028/ref=sr_1_2?ie=UTF8&qid=1315273259&sr=8-2 I can't say enough how much this book has helped our family. My mom is reading it as we speak, and having an "ah-ha" moment (as Oprah would say.. :P)
You really have to read the whole book to get the entire concept, but here's her thoughts on Salicylates (and Phenols):
HtH :-*
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thanks for the scans of the pages will take a look....
Kim, you can buy meat from the butcher as long as it was lsughtered less than 2 weeks ago (whihc most are) Then once the meat is cut off the carcass it must be bought same day and either eaten or frozen in your freezer. Most butchers will not sell meat that they cut the day before but some do, so it always pays to ask.
Supermarket meat is usually not as fresh and you can't ask these qwuestions, that is why I didn;t buy me meat from the supermarkets.
Mkae sure you ask for preservatve free mince. Sausages are definantly out unless your butcher makes them gluten free and preservative free. Even then they will still use onions and spices. So I was able to make my own sausages with failsafe ingredients and then take to the butcher and ask them to make into sausages, - they charged a bit of money for doing that though.
Very fresh white fish is fine too. You must cook it same day or freeze. No canned fish yet. it is hig in amines. No cooked prawns, as they have chemicals in them and fresh are high in amines. you can have fresh squid and oysters, they are low in amines too.
Salmon is moderate amine, so that must be left for later.
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Rebecca, interesting about the neutralisation technique mentioned - the drops of phenol under the tongue. I am interested to searhc out a practicitioner that would do that. I have already done a course of NAET for Kai and it did not resolve his sensitivities al though I think have helped.
Kai is also on a wide range of supplements specifically aimed kick start the detoxification processes in the chain of reactions that need to occur. My naturopath is a "genious" in this area I pretty sure. But he has been on these for 10 months or so... but before he was not able to eat any salicylates, now he can eat quite a bit, but not enough for my liking.
We just sent off his stool sample today to get analysed by a biomed lab... it will cost an arm and a leg, but will show alot about the state of his gut and good/bad bacteria balance. I can't wait for the results - 4 weeks away though.
I will read that book in the next few months too - thanks Rebecca. Right now I can't handle the idea of grain free, really I can't. I am clinging to the gluten free grains I am. I would not know what to feed kai for breakfast, he currently rotates between gluten free french toast, gluten and dairy free pancakes, omelete, buckwehat prridge with rice milk and mashed bananna, gluten and dairy free zucchini and bokchoy waffles, and a dairy free smoothy with egg yolk and flaxseed oil. He always has pear for breakfast too. You can see we rely heavily on grains to get some goodness into him!
I will go there if the other things we are doing don't help though. I really don't know what you could feed the kids being grain free :P
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I actually paid an arm and a leg for just a package of xanthum gum. Which we haven't used much off. A little goes a LONG way.
We do rice noodles with the meat sauce recipe that is in the allergy book. It is actually pretty good and we have it often. I'll give you that recipe if you like and it's super easy. Do you have any citric acid?
I have xanthan gum, too, from our short lived wheat free run. Lately, I have tried to avoid xanthan gum, as it is a corn derived or can be an issue for those very sensitive/allergic to corn. My "soap lady" told me a story about someone's son that was having skin issues, and she finally realized that xanthan gum was corn derived. They got rid of it, and his skin has been clear. Xanthan gum is in a lot of beauty products, too. Just something for others to keep in the back of their minds, if you have anyone sensitive/allergic to corn. And I have an aunt who is very sensitive to corn.
I really dislike rice noodles. :-( Any tricks for using them? I have bought the TJ ones, and they all stick together (even if I use a bit of oil). I end up wasting food when I use them. I usually do a bag of noodles at a time and use them over the week for different things to save time. They are good for less than 15 minutes after you make them! Ok that may be a slight exageration, but not by much. :-( I think going wheat free could be as difficult as going dairy free. I wish there was an easy fix for the bread texture that Lyle preferrs. H can be that way, too. He likes the finer texture. But he will eat it if he is hungry enough.
H has dropped his milk intake by quite a bit on his own. Part of it is that I did find that pitcher for him to pour, so it is a new big boy thing to do. I think I will try to measure out 20 oz to give it a go. What is the recommended daily amt? Or is that the daily amt for dairy including yogurt/cheese/, etc?
I do have citric acid. We use it for canning; the extention office recommends using it to make your tomatoes safer when you can your own.
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I am currently reading "Your Skin, Younger" as it is written by two dermatologists and an ND. It is incredibly interesting. It also has a chapter on the gut and skin connection. Of course it talks about the leaky gut syndrome. Super interesting read about the good vs bad intestinal bacteria and how it is critical to your skin. I am still working on H's skin, and it is hard to come by a book that has a dermatologist's credentials but is also from a more ND angle.
I don't know that I want to go salicylate free again, though, to get to baseline. We did that for a year without improving the skin; I mean we really were on the very low to nonexistent end for a long time before we tried every low/moderate fruit/veg he would eat. We have reduced the histamines that seem to trigger a response (particularly grapes/strawberries). And to be completely histamine free, well then I can't do yogurt/fish/fermented foods.
I am leaning towards pumping up those good bacteria (and I can't really do that with the low sals, as I need the fiber for the good bacteria). I agree with you Eloys. It seems like conflicting approaches to reduce the amts of good foods to accomodate the food intollerance or use the foods (despite the sensitivity) to build up the gi.
And an interesting side note for anyone is using splenda, it also reduces good gut bacteria (we don't use it). And it also leaves environmental effects, as water treatment plants can do little to remove sucralose. I didn't realize the part about the environment. Lots of soft drinks still use it, I think.
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Kim - we are actually pretty close to each other. I leave about 30 minutes east of Athens, GA.
The Amines have been the hardest to abide by. And we just do the best we can. I recently heard of a butcher about 45 minutes from here, but I haven't looked into that yet. What we did was buy some grass fed hormone free beef from a local farm. It's not fresh, but it is frozen right after they process it. So I think that's the safest we've come up with. Sometimes we are able to get a fresh chicken from a local farm, and sometimes not.
Luckily, it doesn't seem that any of us a really big amines responders.
Jean, thanks for all that good info. I didn't know bout the environment angle about sucralose but that's another reason to just stay away from it.
Elo - good luck on finding out more clues for Kai.
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Jean, with the rice noodles, I've found the same problems. To reheat them as leftovers, I actually cover them with water in the bowl and warm them up that way--they come out great, kind of like recooking them, but its faster than starting from scratch.
Sherry lynn, that's funny that we're so close. We have some good friends who just moved to Watkinsville, so we might make it down to your neck of the woods soon, whenever Henry decides to learn to sleep in the car. I think our beef is also frozen quickly after processing, but couldn't find out on their website--I need to call the farm. I just worry that if it is amines he has a problem with (no reason in particular to suspect that, just no idea what is bothering his gut), then I'll never figure it out this way. I can get chicken day after slaughter--it just costs a lot more than I'm used to spending for chicken, even organic chicken. But it could be a treat a couple times a month. I wish money was no issue.
I'm going to hold out for another week or so, but then I think I'll be changing my diet a little to try to target some different things, I just don't quite no which way to go. But I can't keep eating so little variety for much longer. I just am unsure what the likely culprit is--I really thought it would be something like gluten, eggs, corn, chocolate--a whole food, but I think from what I've read, those things clear out sooner than the chemicals, so I should probably be seeing results by now (its been 12 days). I did just start both of us on probiotics (took awhile to get to the health food store), so we'll see if that will maybe help speed the changes along. We had a lot of mucous yesterday. . .
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Great article on Sucralose! I hadn't heard of the environmental impact as well...I agree w/ Sherry Lynn, all the more reason to stay far away from it!
I did just start both of us on probiotics (took awhile to get to the health food store), so we'll see if that will maybe help speed the changes along. We had a lot of mucous yesterday. . .
What probiotics are you using? Double check the ingredients for "extras", like FOS ect... you want to try and get something as pure and natural as you can. A lot of probiotics unfortunately have undesierable fillers which can cause tummy troubles.. :-\
Hang in there Kim.. it does take time for the intestines to heal and for the mucous to subside. We still aren't getting 100% perfect poops here, but we're getting there slowly.
Ah, can I just say again how much I'm loving Nourishing traditions!!! I'm still reading through it, but man! Soooo good!! Especially from a natural healing standpoint! wow! :D I just read more about the healing powers of homemade bone broth. It's like a miracle elixir ;)
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Rebecca, Nourishing traditions was my first book on nutrition and cooking from a wholefoods perspective, and it opened my eyes to another world. Pretty amazing dtuff isn't it? That booked prompted me to soak our grains and make organic chicken stock once a week, we cook all Kais grains in it, stock pots and soups and yse it sparing for ouselves where possible! I am convinced he is also getting good calcium from it too.
Interesting about the skin stuff Jean :)
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We got a pretty much mucous free poop today!!!! We'll see if it sticks, but I'm feeling hopeful. Good timing--we hit 14 days tomorrow and I was getting discouraged. And I made brussel sprouts tonight--probably the most flavorful food I've had since starting--they tasted so good!
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That is awesome Kim, may the gut healing begin ;D
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Kim - you will almost pass my house on the way to Watkinsville, I believe. We live very close to 85, which is what I think you would take to get to Watkinsville. Great news about the mucus free poos.
I really need to get a hold of the nurturing traditions book.
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This a.m.'s poop was full of mucous :( But it can go back and forth as it clears out, right? I just keep hoping we're there whenever it looks a little better.
So, if I alter the diet to the more moderate level instead of being so strict, do you think the meat I'm eating (about one serving of chicken a day) is okay? Sherry lynn, you went ahead and ate meat even if it wasn't as fresh as the guidelines, right? How long did it take for you to get to baseline? (And yes, I think we take 85 south to get there--one of these days. . .)
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Sherry Lynn - http://www.amazon.com/Nourishing-Traditions-Challenges-Politically-Dictocrats/dp/0967089735/ref=sr_1_1?ie=UTF8&qid=1315530922&sr=8-1 AND only $15!! :D
Sorry to hear the poops are up and down Kim. It does take a long time for the gut to heal. We still aren't completely there yet either.
I really don't know what you could feed the kids being grain free
I forgot to answer this. It really isn't so bad once you get used to it. I could be lucky though, bc Ds1 is still young enough that we only had to go through about 2 days of him asking for his toast before he forgot about it :P There's "bread" substitute recipies that are completely grain free (although, high in sals) Dh and I eat one that is basically 3 eggs, 2 cups almond or coconut flour and 1/4 cup of fat (ghee, olive oil, coconut oil ect.) I mean, it's not real bread, but it does the trick. For Ds1 though, breakfast is usually a smoothie made w/ avocado,blue berries, goat yogurt, kefir, soft boiled egg yolk & 1/2 banana and 1/2 tsp fish oil. Might sound funny, but he LOOOVES it. Or we will do an omelet w/ veggies. Lunch is almost always chicken soup now. It's his favourite thing. Sooo messy, but sooo good for him! And then dinner he has whatever meat/veg/lentils combo we have. Snacks are fruits/veg. Between The recipe section in the GAPS book, and Nourishing traditions I find we have lots of variety. There's some great recipes for "pancakes" made w/ shredded squash, but those are a little time consuming. Here's some really good grain free recipes I've been looking through too, (there's breakfast/lunch/dinner ideas) http://www.healthhomehappy.com/gaps-recipes But again, if you're working within a limited Sals guidelines you might have to make some substitutions.
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ohh, and here's a super easy grain free breakfast on low/mod sals: http://www.healthhomehappy.com/2010/08/banana-pancakes-grain-free-protein-rich-crepes.html
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I think my kids would REALLY struggle with the grain free part. I guess because they are older, it would also make it that much harder. They wouldn't stop asking after 2 days.
Speaking of weird foods toddlers will eat, until Savannah was 18 months old, her breakfast was usually a mixed grain hot cereal with spinach and prunes mixed in. :) Then she noticed that Daddy put brown sugar on his oatmeal and it was all over from there. Good run while we had it.
So, over the last week or so, Henry has gotten increasingly hard to put down for bed, and today he fought naps as well! I'm thinking its probably a coincidence and not something to do with the diet. I know the 4 month mark can be rough, but this is really getting so discouraging. We had more mucous later today. Oh, and I am stopping his probiotic because there is FOS and GOS in it (maybe that has something to do with him crying for almost 2 hours last night at bedtime--I read that it can cause gas). I'm really bugged that I didn't notice that on the label when I was looking at them, but it wasn't with the other ingredients and I didn't even look at the list of probiotics in it because I assumed they were all okay, just checked the "other" part of the label. the ones I got for me are okay, I think, so I'll still keep taking those--will he get any through bfing?
This feels so hard. I find myself second guessing everything I do. Tonight, he had a little diaper rash on his lower belly and I went to put something on it, and realized that I had no idea what was okay to use, so in desperation, I just rubbed some safflower oil on it--no idea if it will help the rash at all, but I figure if we can eat it, then it shouldn't have anything in it to make his gut sick.
And I keep going back and forth on making the other 2 kids try this as well. I'll start to chicken out, and then one of them will throw a tantrum about something ridiculous and I'll think that it will all be worth it if any of their irrational emotional issues would actually be helped by this. Although I do feel that the RPAH diet is not really healthy, so I would hope that it wouldn't take long to know, one way or the other, because I hate to cut out all their favorite fruits and veggies for very long.
I'm curious--I know a lot of you have your whole families eating this way. Is there anyone else who is doing this on their own and still having to cook "normal" foods for your family? Does it ever get easier? I think if I just didn't have to deal with any other foods than what I'm allowed to eat, it wouldn't be quite so tempting to cheat. I haven't yet, but the pizza at dinner tonight was really tough to handle. Luckily I KNOW that dairy bothers Henry, so I couldn't have had it anyway, so I was able to resist. And I had to make a cake for a baby shower I'm co-hosting tomorrow (which will be at a restaurant where I can only eat the plain rice--no fun.) Smelling that chocolate is making me feel very weak. I don't remember the last time I've been 2 weeks without chocolate.
My hats off to all you ladies who have stuck with this for long enough to see something happen. I'm ready to throw the towel in on a regular basis. But then I think of the wasted 2 weeks and I make it through one more meal.
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Rebecca, you got me all excited when I saw the recipe, and then I realized that I still can't have egg. Bummer. I'll have to remember that though when I start testing things and hopefully can add egg back in.
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Awww, sweets, sorry! It's sooo hard when eggs are out! Egg was one of the first things I added back actually. Thank goodness!! I was 3 weeks egg free and loosing my mind :P
On the probiotic, I think I might have PM'd you these, but I 'can't remember totally: http://www.amazon.com/BioGaia-liquid-L-Reuteri-probiotic-cultured/dp/B001TLPJPU/ref=pd_sbs_hpc_3 These could work for Henry. We're using them now for Arthur. The probiotic strain is highly compatible with infants. As for probiotics through bm, whatever you are taking, I don't think it can travel through into your milk. BM however does have naturally occuring probiotics, from my understanding. It's just that these little ones need the extra to help heal their gut, kwim? If you are ordering online, I would suggest you contact whoever is shipping to be sure they are shipped fairly quickly w/ freezer packs to keep the cultures at optimum level.
I wish I could help you with getting your family on board. It must be sooo hard. Like I said, I guess I'm lucky my toddler is just too young to put up much of a fuss. If it's not in the house, he won't eat it, kwim? Hopefully these ladies will have some words of wisdom for you. I can just offer more ((hugs)) You're doing an amazing thing for Henry's health!! :-*
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Rebecca, that low chemical grain free breakfast looks awesome :)
Kai would eat it for sure.
I think you ladies would really be interested in this organisation "MINDD" - nit is Australian based, but the information on this website and treatment of conditions is cutting edge. Sheery,l I think you woudl be especially be interested.
We have booked in with a MINDD endorsed BIOMED Dr, he will evaluate Kais stool sample analysis - for his gut health (good bad bacteria balance) and make recommendations.
Keep up the good work KIM! Just try and get through one day at a time, one day soon you will reach 4 weeks. :) The poos will go good and bad... it's more important as to what they are like when you get to the 4 week mark. If there is some leaky gut going on however, you my need to take some supplements to help heal bubs gut... a naturopath would be a great support for you in that respect.
I ended up making the same dinners for everyone in the family most of the time. So yes, they ate failsafe to a degree. I didn't push the envoleop by serving them things that I loved like pizza. I would ask my DH to eat take-away out of the house if he had to and take DS with him to go eat that sort of food as I felt it wasn't fair on me. And he was happy to do that. :) I would let my DS eat his normal breakfast and lunch as I found 2-3 different meals at those timesof the day easy to handle. However when it came to dinners, I found it extremely hard to make more than one meal. So I would make a roast dinner in the way that suited my diet and with veges that I was allowed to eat for instance. So when we came off the diet when DS2 was 123 months, my poor DH was pretty excited and my DS1 eating range was narrowed somewhat. So it did have some long term impacts, but nothing that can't be fixed with time :o
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Hey ladies, I know you are all as passionate about real food as I am, maybe you can chime in? http://babywhispererforums.com/index.php?topic=217108.0 I'm so busy with the kids, but I'm feeling the urge to do something more. Genetically Modified foods are getting bigger and bigger.. and I can't just sit back and let it happen. I'm only one person. I just wish there were more things I could to...but I think together we can make a difference :-*
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Kim - you might be able to use egg replacer for that crepes recipe?
Elo - I'll have to have a look at that link. Remind me if I forget :) Let us know how the appointment goes.
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Eloys--hope to hear good news from your appt!
Well, I think we're geared up to start this as a family. I'm not removing gluten or dairy from the kids (or eggs) for now, although Abe would probably benefit from that, but I just feel like it would be too extreme and they are already not too happy with me doing this. So I'm still going to have to cook foods that I can't have, but at least it should be a little better, and hopefully in the next week or two, I'll be able to add grains back in, although our poops have been pretty bad the last 2 days, so I'm not feeling like we're any closer to baseline.
Can you ladies help me out--I started a thread on probiotics here http://babywhispererforums.com/index.php?topic=217281.0
I'm hoping to find one I can get locally so I don't have to chance the shipping and it coming not cold.
Thanks!
~Kim
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Glad to hear your whole family will be on board Kim. I put my 2 cents on your thread.. xox
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hi ladies :)
sherry, how r things going? any more successful challenges?
little K is travelling along ok. was going to do proprionates and annatto challenges this week but he has broken out in a rash on his face for the last week. think i'm going to have to cut the carrot and bok choy out for a couple of weeks and see if that is the culprit, sigh, just when i thought he was on unlimited moderate sals. tho i think his 2yo molars could be on the move too.
kim, i didnt put my whole family on the diet although i do plan at least 50% of our meals to be failsafe tho. and the ones that arent usually involve making a variation of the same meal for ds2 so that it at least looks like our food anyway. i have found our eating range has changed quite a bit so have to take care not to get bored with the same old foods all the time. i was on the diet for 5mths and it was very challenging making diff meals for everyone, lots and lots of roasts as elo said! you can do a lot of things like using gluten free grains for yourself and others for the rest of the family, also i would often start a meal with the same base and then remove my portion (these days remove ds2s portion) and add failsafe stock or sauce and my allowed veggies to mine and then the high sal stuff to everyone elses. to help ds1 not miss out so much, DH would have a 'special dinner' with him once a week that might be take away or tacos or something that ds1 chose and they sat at the kiddy table to eat that in a diff part of the house while ds2 and i had our dinner. we still do this now but i get to join in too and i make sure to make ds2's favourite foods that night too. i found the first month the hardest, then it really didnt bother me so much as i'd found good substitutes (except for cheese, that was hard as there's no good sub for that!) and treats that i could have when others were eating something i couldnt. tho i didnt have to go as strict whilst bfing as some and got baseline pretty quickly, ds2 is still on much of the diet tho so i'm always conscious of him feeling like he is missing out. oh, and for pizza, potato and leek pizza on gf base tastes amazing when u havent had pizza in ages!! good luck hun, hang in there and hope u get baseline soon.
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We saw the ped. today--I updated here: http://babywhispererforums.com/index.php?topic=217177.0
And as far as my family going on this diet--not going so well :P We've had so many things come up this week that I haven't even been able to implement it fully (snacks offered at school, playdates afterschool at other peoples houses when I'm not there, dinner out this weekend). So I decided we'd ease in--no packaged, premade foods, but I wouldn't worry about the natural chemicals. So I made homemade bread, and muffins and things to have on hand, and I thought I explained it to DH, but I come down this a.m. and he's made the kids french toast (great!), and is serving it up with a can of whipping cream and artificial syrup with HFCS in it, and he'd made OJ, which I was trying to avoid as well, even though its just 100% juice, but I was cutting back on the fruits and veggies that won't be allowed and had told the kids no more juice for a few weeks. Guess that's why you are supposed to throw all that stuff out, but DH loves it and while he said he would go along with family meals, he's not going to stop eating this stuff, even during the short trial i want to do with the kids, so the stuff will be around. Obviously I need to explain it a little better to him so he'll know what is off limits.
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Kirry - we are doing the Amines challenge right now. I think we might do the annato at some point. I'm not sure about proprionates because I'm pretty sure they are a problem.
Hugs Kim. I'll try to look at your post the next day or so. Work is crazy busy right now.
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Oh, ugh at the school snacks! One of my pet peeves. Do get them on board ASAP, have a doctor's note if you can get one to back you up. My younger DD is in a class with a severely nut-allergic child and each child washes hands before even entering the classroom from anywhere else, and the teacher has decided NO snacks AT ALL this year to avoid any issues, not even for Halloween or Valentine's Day. I was ECSTATIC because it meant a load of my mind for one of my kids at least - someone else had done the work for me in that regard. :)
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Best of luck with the Amine challenge Sherry. :) I hope they pass. :)
I thought you would be interested to see the test we are getting done for Kai. I can imagine it might be helpful for Lyle of you have access to this type of testing. This is the stool sample analysis for good/bad gut bacteria, and the link explains briefly how this can contribute to a wide range of dieases including food intolerance and also autism, sensory dissues and ADHD. It is all very new research, but studies are continuing along with Melbourne University and this laboratory. My Dr says he has improved may of his patients food intolerance and autsim by putting the gut bacteria back into balance.
more explanation here:
http://www.bioscreen.com.au/About-bioscreen.htm
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Thanks for the idea for the rice noodles. I will give that a try. :-)
Sher, I have been able to whittle down H's milk a bit more by using cups that nicely fits only 4-5 ozs. Then we are able to keep our 4 "servings" of milk per day. I am still doing yogurt either in his smoothie or as a side dish with other food. He also has cheeses. That is our update there.
Is gaps a pretty meaty way of eating? By looking at the breakfasts on that previous link, I wouldn't think so. But by reading the general info, it seems pretty meaty. Not that I wouldn't cook that way for the others here (we are all about "customization" here, lol), but it may take a bit of tweaking for all of us to be happy. ;-)
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we had our GI appt today. Not the most positive experience. I posted over here: http://babywhispererforums.com/index.php?topic=217737.0;topicseen
I may be looking for another dr. soon, but we'll wait to see what the results are from the bloodwork and stool sample. I was really hopeful when they brought in a nutritionist--figured someone on my side to talk about my diet and what else I could try, but the big push was for formula. :P
So its been 4 weeks, still tons of mucous--I'm switching to the GAPS type diet and we'll see if that helps at all.
Jean, it does look pretty meaty. My mom eats a similar type diet and that has always bothered me about meals with her. But you can have some beans, nuts and if you don't have dairy issues, then dairy. That opens up a lot of non-meat meals. I'm going to have a little more limited diet since I can't have dairy or soy, but I think with adding eggs and fish back in, I'll be okay. I had eggs with guacamole for lunch and am having salmon for dinner--figure I need to get all those healthy fats back in my diet to see if my milk might get fattier and help out poor Henry.
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Amines seems to be fine. I felt a little jittery because of all of the chocolate. But, other than that no problems.
How do you test glutamate? It says a certain cracker, but I check the website and it looks like it's only in Aus.
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Hi Sher! Hmmm on the cracker...tons of glutamates in soup broths, there are other things in it that will skew your results making you unsure if it was sals/glutamates.
A post to the US group, perhaps. :-)
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I know we've been talking about Gut health - here's a really interesting link: http://www.ei-resource.org/illness-information/environmental-illnesses/candida-and-gut-dysbiosis/
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Pretty hard to test glutamate - if you pass amines I think there is something that is high amine and glutamate - I will check. Kirry might remember actually.
Will look at the link later.
Girls, I am really really onto something re: Kais food intolerances and allergy in general. Will let you know later. Its high copper/ low zinc. It is the udnerlying cause behind so many conditions, especially enzyme deficiencies, behavourial disorders, digestion issues and you thus you guessed it... food intolerance and over active immune system - you guess it - allergies! Will postsomke links soon.
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The test ideas I found:
Natural free glutamates and amines are mostly found in the same foods. You only need test MSG separately if you haven’t reacted to amines.
•4 tablespoons soy sauce (glutamates and amines)
•Parmesan cheese, sprinkled liberally (glutamates and amines)
•500ml chicken noodle packet soup (glutamates and sals)
HTHs.
Eloys--curious to see what you've found.
Off to read your link, Rebecca.
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Its high copper/ low zinc. It is the udnerlying cause behind so many conditions, especially enzyme deficiencies, behavourial disorders, digestion issues and you thus you guessed it... food intolerance and over active immune system - you guess it - allergies! Will postsomke links soon
I've read some things about this! So interesting you've brought it up!! Curious to see what you've found out too, Eloise!
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Thanks for the ideas. That helps a ton! Elo - I'm curious to see what you think about it as well.
Looking forward to your knew found ideas as well.
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Hey, any thoughts on carrots? Yesterday and today I was peeling them and my hands got insanely itchy and a few reddish patches!?! That's NEVER happened before... hummmm ???
ETA - this isn't the exact article I read about copper/zinc - I can't find it, wish I could! But here's a wee bit of info http://www.drkaslow.com/html/zinc-copper_imbalances.html
Can't wait to read your stuff Eloise!
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Rebecca that article is basically on the same track. This article explains what I am now discovering about Zinc:
http://www.tvernonlac.com/copper-toxicity.html
Basically zinc is the single most important mineral that any of us need and we need alot more than doctors think.
Low zinc starts of a chain reaction of bad biochemistry in the body, the more severe the zinc depletion the more severe the repercussions. What seems to be amazing is that most if it is reversible. If leaky gut happens along the way though, this must be fixed along with the zinc.
I have found yet another Dr. He is a GP, but has spent alot of time in university researching zinc. He is a zinc expert so to speak and if you are symptomatic, sends you off for zinc plasma tests to measure zinc in your blood and also tests you for pyrroles - a serious condition that is caused my severe low zinc - food intolerance is one of the symptoms, so are auto immuns disaeases, skin condition and behavioural condirions including sensory stuff and autism. Pyrroles is totally reversible if in zinc supplements for the long term! I have Kai booked into this Dr and I am pretty sure we will be doing pyrroles tests.
I have been on zinc alot of years now as i have high copper but i have been unable to fix i (discovered 4 years ago through hair mineral analysis) I was unaware at how important this is for my body and my babies....zinc is passed through the mother milk. I will be going to this Dr for myself next week too, perhaps i need to take steps to take copper our of my diet - no 1 would be to drink filtered water due to copper pipes.
I have been following a facebook discussion group that is public - for failsafe people who have children on teh failsafe diet. A few of us have gone off this tangent to explore BIOMED medicence as a way of analysing gut health for our LO's with the theoriy that a bacterial imbalance can cause food iontolerance. And from this the Dr's that everyone is seeing are also saying that the zinc/copper balance is a crucial factor. Some of them have started formal treatment with zinc and B6 supplements and also following a full stool smaple analysis - good /bad bacteria and they are finding their tolerances are increasing! Kia has been on these supplements for some time, it might be why is can now eat high sals.
http://www.facebook.com/topic.php?uid=206988009314187&topic=392&post=2392&ref=notif¬if_t=board_post_reply#!/FailsafeEatingSupportGroup
Go to the discussion board and see the discussion called : Beyond failsafe - Biomedical treatment. To join, just "like" the group.
Drs that focus on zinc and gut health are called BIOMED Dr's here, and they are affiliated with MINDD org here. There are mother/umbrella organisations in the US if anyone wants links. I posted the MINDD info a way back on this thread:
http://mindd.org/s/index.php?/pages/search.html&f=
If you can take some time to watch the MINDD TV video presentations, pretty amazing stuff.
Whilst we are onto it I will post my other paeds latest presentation on autism, he is acutally improving autism in his patients at the moment with biomedicence and is booked out one year in advance.
Here is a link to a lecture he recently gave:
http://mindd.org/s/archives.php/147-Practitioners-Lectures.html
Again, plenty of info on the MINDD org website.
Note that he is on the advisory board for MINDD org and so is Dr Campbell Mcbride! Her stuff is available o the website too.
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Very interesting stuff! I've often wondering about low zinc for either me and/or my DS (who also have food intolerances) but either time either of us takes zinc supplements, even with food, we get a quite upset stomach - including cramps...
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Yeah, that's the problem I've had with zinc supplements. :( Not much point taking them if I'm going to throw them back up again. :-\
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A few of us have gone off this tangent to explore BIOMED medicence as a way of analysing gut health for our LO's with the theoriy that a bacterial imbalance can cause food iontolerance. And from this the Dr's that everyone is seeing are also saying that the zinc/copper balance is a crucial factor. Some of them have started formal treatment with zinc and B6 supplements and also following a full stool smaple analysis - good /bad bacteria and they are finding their tolerances are increasing!
AMAZING this is along the same lines as GAPS as well.. perhaps that's where I read about zinc.. I'll have to go back through the book!
ETA - YUP! Just checked.. I've been doing so much reading I forget where I've read what sometimes :P There's quite a few sections on zinc in the GAPS book, also discussing the exact same principles and nutritional deficiencies you are talking about Eloise!
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There are different forms of zinc, some are eaiser on the stomach. I think it can take a while to find the right one for you. Some needs to be taken with food and a large glass of water. I can take large doses of zinc sulphate in a large glass of water and no worries at all but that is the most nausea creating form I think. I wonder if that is because I am so deficient. I also take with Vit C for absorbption of the zinc.
Yes Rebecca, the zinc/cu thing is part of the same science as Dr Campbell Mcbride, all the biomed Drs are well versed in her stuff (GAPS) as well as the zinc stuff. I have watched some of her videos on MINDD and she mentions the cu/zinc imbalances there too. :)
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Hmmm I had only tried zinc oxide I believe. I do have an ionic zinc concentrate (drops) that I had tried with DS (tummy cramps for him) - maybe I should try those today after breakfast and in a full glass of water and see how it goes? I do know that low zinc can be one (of many) factor in dyshidrotic excema, which is I've had torturing my hands for some time now...
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It's worth a go, can the naturopath advise? I am on a 2 week trial of high doses of zinc (220mg) for my psorasis. Unrelated to the biomedical treatment I am about to go on, (yet to see my new biomed GP). I am trying this as a recommendation from my naturopath for 2 weeks. Apparantly this dose can heal nearly any skin conditon in two weeks. Hard to believe, lets see what happens to my psorasis. It has been all over my torso and my leg for about 10 months now.
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I looked at foods with zinc, and I don't eat a lot of them. I see acne is one of the signs of zinc issues (as many of you are mentioning skin related issues). The dermatologist I saw recently flat out said there is no connection between skin and what we eat. I would have to significantly disagree, as I am a complete case of it.
I did three things that helped significantly: a vitamin (which has 100% daily recommended amt of zinc, but it also has good amts of other vitamins like a, b, c, e), switched to real soap (no more of the sls or detergent soaps that were drying my skin and making it ridiculously oily, irritated; I was cetaphiled to death with no improvement), and got rid of shampoos (using baking soda water or my own homemade soap/dr. bronner's), and bragg's apple cider vinegar (helped return skin to slightly acidic ph, which is what skin is supposed to be and naturally reduces bacteria).
So, H's vitamin only has 20% RDA of zinc. He does eat peanut butter. What are others doing to naturally increase zinc? It says that too much can cause abdominal pain, vomiting, and diahrrea. Gi issues are what many of these little ones have already. :-( Too much and you really can't tell which is the problem...
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Jean, how do you take the apple cider vinegar?
True about over dosin Jean, although our naturopath says that 80 of people are low in zinc around here. I have never focused on zinc foods as I have always been so low in zinc. I think its basically meat and salmon - the vegetarian diet is naturall high in copper and low in zinc.
The biomed GP I am about to see sends you off for a zinc plasma test (blood test) so the zinc levels can be determined correctly. You can't have had supplements for a certain amount of time before the test - not sure how long. I will be able to fill you ladies in on everything after my appointment next Wed. Naturopaths diagnose the low zinc through zinc tally test plus a range of other symptoms, wound healing is one, I can't remember the others but there is a truck load of things. I guess zinc needs to be looked at in a wholistic sense -whole of body picture from a qualified practioner. I would go for a BIOMED or associated Dr with MINDD org and affiliated organisations if possible.
I am sure the BIOMED Dr we are about tos ee will say lay off the copper, because high copper brings down your zinc. I think it needs to be attached from obth ends, lower copper and raise zinc. For instance drink filered water because tap water from copper pipes adds copper to your body. Once zinc is depleted it is incredibly hard to raise back up with diet alone and requires supplementation. At that point is becomes very hard to overdose.
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Well so far so good. Holistic doc said go ahead and put 10 drops (15 mg) ionic zinc concentrate in about 10-12 ounces water this morning and had right after breakfast. That was a little over an hour ago and so far no cramps or nausea. We will see!
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For the apple cider vinegar (we use braggs that has the mother in it for cooking/skincare; not the sterile kind), you dilute it in a 1 to 4 or 5 parts cider vinegar to water. I mixed up a bunch and put it in a bottle in the bathroom. I started twice daily (or would do twice daily with bad break outs), but then dropped to once a day at night. Because my skin is clear now, I don't feel that I need to use it.
My favorite natural skincare books are by Stephanie Tourles. :-) I read a ton about skincare while trying to customize our skincare for the failsafe way of eating/living.
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I said sterile, but I wanted to suggest bragg's. It is raw/unfiltered/organic. http://bragg.com/products/bragg-organic-healthy-live-food-products.html
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Hey Jean - I saw that bragg's stuff at the store the other day. I was curious about it :) we can't do anything with vinegar right now though since we are still trying to do this failsafe stuff.
I watched the link that was on FB about Susan Dengate and the news broadcast. It was really interesting. That would NEVER fly in a whole class here. Schools can't even get with Jamie Oliver here, without so much to-do.
I forgot to mention that E is still low in Iron. I was really surprised because he is doing so much better with meat, etc. But, we had to start supplements. Curious about the iron.
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Forgot to say we are on vacation for a week, so I'll hopefully get to hear your resolts when I log back on Elo. Also, my sister gets psorasis really badly and I have eczema so I'm curious about the zinc. The failsafe diet did not take it away, although it did help it.
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Yes, failsafe is not big on vinegar. You are right! I think it was Nourishing Traditions that does a bit more with vinegar. That book is also in the food chemical free camp. Once you weed out the chemicals to avoid in RPAH, then it is easier to broaden out.
I know we have chatted about Jamie Oliver. I wish schools would "clean up" their menus. I think I am going to have to have H take his lunch to school when he starts kindergarten. The teacher at prek is super nice about the food issue. She gave Heath a cubby for "safe" snacks. On a day that there are grapes/strawberries (that is my focus right now), she just pulls something out for him. She also makes a note on his daily sheet with regards to what he had, if it was different than the other kids.
Do you currently take a vitamin with zinc, Sher? I really did notice a big difference in my skin with taking that vitamin. Perhaps it's the zinc, or perhaps a combo of all the other vitamins/minerals that are good for skin. I have never been able to take a daily vitamin until I started taking one that is iron free. It made all the difference. I wish I had known about the iron free prenatal ones when I was pregnant with Heath.
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For the apple cider vinegar (we use braggs that has the mother in it for cooking/skincare; not the sterile kind), you dilute it in a 1 to 4 or 5 parts cider vinegar to water. I mixed up a bunch and put it in a bottle in the bathroom. I started twice daily (or would do twice daily with bad break outs), but then dropped to once a day at night. Because my skin is clear now, I don't feel that I need to use it.
DO you wash it off or leave it on the skin?
Well I have been on the igh dose zinc one week now, so far nothing has changed with my skin. One more week to go.
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I wish it was working for you, Eloys. I have done both washed it off and left it on. I would start off just washing it off. If it makes your skin uncomfortable, I would probably dilute it a bit more.
I also ran out of my vitamins for about a week, and with everything the same, the acne was starting to come back again. The vitamins make a good difference.
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I'm not sure what I've got, but I started feeling really weak, achy, dizzy, and lots of chills and one of my breasts is starting to get sore--I'm thinking it may be mastitis and now I don't know what to do. Antibiotics are not a good idea, if I can help it, right? Maybe its just a coincidence. I have had a cough/sore throat, and Henry has discovered the fun of clamping down on my breast while eating and turning his head, so I've been sore off and on the last week.
Any suggestions on home remedies other than just feeding frequently and massaging the breast that's sore?
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((hugs)) Kim!! That's terrible. Are you able to eat coconut oil? Even just off the spoon? It has very good healing properties that might be able to bump up your immune system. I can't remember, you are taking probiotics as well, right?
I've heard warm cabbage leaves can help. http://www.lactationconsultant.info/cabbagecure.html It works for engorgement as well as mastitis.
On another topic, I read this about GMOs today, thought you ladies might be interested: "There's already plenty of evidence that the Bt-toxin produced in GM corn and cotton plants is toxic to humans and mammals and triggers immune system responses. The fact that it flows through our blood supply, and that is passes through the placenta into fetuses, may help explain the rise in many disorders in the US since Bt crop varieties were first introduced in 1996.
In government-sponsored research in Italy, mice fed Monsanto's Bt corn showed a wide range of immune responses. Their elevated IgE and IgG antibodies, for example, are typically associated with allergies and infections. The mice had an increase in cytokines, which are associated with "allergic and inflammatory responses."
Here's the full article if anyone is interested...
http://articles.mercola.com/sites/articles/archive/2011/10/05/has-any-company-ever-harmed-the-planet-more-than-this.aspx?e_cid=20111005_DNL_art_1 GMOS have got to go!!!
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We just got back from vacation. It was great. But, a diet disaster, that's for sure. But, Lyle and Emory both coped more than I thought they would.
Also has also added a few things to his diet which is both AWESOME, amazing and disappointing at the same time.
Awesome because he is broadening his diet which we sooooo need. I think we might be up to 20 foods now. Which is the most we've had in a long long time. I'm going to make a list after I'm done with this post to send to his SLP. But, disappointing because almost all of them are "bad" for him, that I let his Great Grandma buy for him because he ASKED for them, and she said yes, and to be honest I was curious if he would eat them.
So: He has picked pancakes back up. YEY. He has added noodles, both rice and regular
And the big one his doughnuts, he's asked for them TWICE since being home.
Also, we have learned that not only are propronates (sp) not good for him, HE CRAVES them like an addict. I think he went through 1/2 a loaf in two days. So we promptly went out and bought gluten free, preservative free bread.
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It does sound like good news/bad news. But he is broadening; that is super! You have to start somewhere, right? I think the food chaining mentions that, too? Now finding sutible substitutes may work? I know that is a tricky one, as you don't want him to start disliking those foods again because something about them changed.
It sounds like he does better with gluten free, but he likes the "regular" bread. Is he definitely gluten free? I found a bread we like that uses no oil, but it does have whole wheat and unbleached white flour. It keeps well in the refrigerator.
How is the gf cooking coming along?
And gmo's are on our avoid list, but it is hard to always know!
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Jean--maybe you already know this, but Trader Joes brand is all GMO free. I just found this out last week, but it was nice to know that a lot of the food we've bought the last 3 years has been GMO free since I do a lot of shopping there.
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I have heard that, but it doesn't say on the packaging that I have noticed. Most of the things at TJ do say TJ on the packaging. That would be safe, then? Some things like the blueberries say pesticide free, but not organic. But I was uncertain about gmo's; figuring it was better than anything else available, we have been buying those. Thanks!
Sher, I did a little checking. Here is a blog in your area with a gf recipe. Maybe there would be some gf cooking classes, where you could learn a few tips. Maybe you can find a lead for a class in the link below; it could save some money if you can make something he likes at home. I have taken a few classes from the local chef's gallery; local chef's teaching classes at a cooking supply store for home/professional cooks. I actually love doing it; like a mom's night out for me and my mom.
http://www.examiner.com/gluten-free-food-in-atlanta/upcoming-gluten-free-cooking-classes-metro-atlanta
http://aprovechar.danandsally.com/?p=741
http://aprovechar.danandsally.com/?p=228&cpage=4#comment-24232
http://www.rudisglutenfree.com/local_coupon/atlanta/?
gclid=CKGA5djj3qsCFcfsKgodmhzczw
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http://celiac-disease.com/jules-gluten-free-cooking-class-in-atlanta/
Quite a bit comes up with atlanta and gluten free.
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I looked on TJ's website to verify the GMO stuff and its all their brand items. I don't know what that means about the fresh fruit and veggies (I need to ask next time I'm in), but if you are talking about the frozen, packaged kind, if it has their brand on it, it is GMO free. And I think some things, like wild blueberries can't technically be certified organic because they are wild, but that also means no one is spraying them with pesticides, so they are a safe bet.
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Hi Sher, sounds like you went off the diet a bit at grandmas? Makes sense. Are you going to klep Lyle on the diet now - what things can you introduce back in without problem? - i.e. passed challenges?
Which challenges were definant fail?
Well I got bloods done for Kai and myself for Copper, Zinc, blood histamine and pyrolles condition (Pyroluria http://drkaslow.com/html/pyroluria.html) as well as Iron and full blood count for myself. These tests are called the Pfeffier Index named after the Pfieffer Institue in America. The Pfieffer institue is responsible for discovering that children with autism usually have zinc and B6 deficiences, high copper low blood histamine and also pyroluria. They found that long term supplements greatly improved the childrens autism and even cure some.
These mineral imbalance also causes biochemical imbalances thatt lead to a whole range of other conditions which I won't go into including food intolerance and allergy and there is a long biochemical explanation of why and which process require zinc and B6 to function.
I feel that we are really close to uncovering the source of Kais food intolerance, allergy and reflux. I fell a sense of excitement , that the intense researching, searching and energy put into this is coming to a climax. Results will come in the next few weeks. Kai has been on the right supplements for this stuff for some time... but he may not have neen at the right dosages to actually make a difference. We will see soon enough anyway!
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wow elo, fx this uncovers something for you.
sherry, prob too late, but for the msg/glutamates testing, as pp mentioned parmessan cheese is good if dairy tolerated and soy sauce if soy tolerated. if not then you'll need to do some product ingredient reading, numbers 620-623, 627-635. we had to wait til K could tolerate dairy and soy to test as soooooo many products are msg free now, even those crackers listed in the protocol dont actually have msg in them anymore. how r the rest of the challenges going? great that lyle has added noodles into his diet, small steps hun, well done :-*
update on K, after a failed med wean we are back on food challenges and only have a couple to go. he has passed all dairy, soy, sulphites, msg, and annatto colouring now. currently testing sorbates, then just colour and a retest of proprionates to go. no point doing benzoates as there is no way i'm giving him lemonade anytime soon, lol. then after those will go back to increasing his salicylates tolerance level, of which we've finally added carrot with no reaction, so on most moderate sals now.
i am struggling with K's skin tho, his little red cheeks (he's had this for over a year now) are getting dry at the moment but i am yet to find a product to use that he doesnt react to. have tried sorbolene, vitamin E cream, various mustella excema lotions, elidel cream, and a few more i dont remember atm.
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Would plain old zinc cream help his cheeks?
I think there are benzoate preservatives in the panadol and the neurofen - so perhaps a pass?
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In theUS, food additivies have no numbers; they don't even have to be specifically listed if they put "natural flavorings" or some type of vague ingredient listing. It is pretty ridiculous. Hugs for the failed med wean. Have you done an abdominal ultrasound or upper gi to make sure there are no anatomy issues? The dr has ruled out things there?
Kirry, I find that creams make things worse. People can be pretty reactive to them, as they bypass your liver and directly enter your bloodstream. Determining the cause of his dry skin, that may help. Detergent based cleansers for the skin (anything that is sls or that variety) can actually be pretty drying because they remove/don't have glycerin. And there is a hodgepodge of chemicals, usually. Real soaps (that you make your self or buy from a real soap maker) do not remove the glycerin. Dr. Bronners can be fine for some, but there are so many oils to deal with or wonder if they are still causing issues. That is what set me on the path of making our own soap; trying find a recipe for salicylate free real soap. If you don't want to go the soap route (the most gentle is really an organic cold pressed olive oil; not low sals, I know), then perhaps just go with water for cleansing. And avoid shampoos that will run down on to his face inevitably. I wash H's hair with real soap once a week. I use a dr. bronners or the olive oil soap. His skin is the best with a rinse down every night with water and being in his room with the air cleaner. (I suspect there is something enviromental that could be a factor; have you skin tested for things like dust mites, mold, and such?)
Cleure is a brand that is salicylate free; there are probably other brands, but i think they are going to be more detergent based. The cleure site has a shea butter, and their line is specifically for salicylate free (but I don't know that shea is naturally sals free). But you can by 100% unrefined organic shea butter. I buy ours from Mountain Rose Herbs, but you can probably find something local and reputable. http://www.mountainroseherbs.com/butter/butter.html http://www.cleure.com/Shea-Butter-Benefits-s/292.htm
I personally use jojoba oil on my skin for moisturizing, as it is most like your own skin's sebum. No more concocted creams by manufacturers for us. Jeff likes to use real shampoo, so we bend on that one, and I buy one by giovanni. Of course he uses a regualr deoderant; just need to be careful about which you choose for the parabens and phthlates (at least in the US).
And one more thought is the detergent that his clothes are laundered in or any fabric softeners, etc. I also make our own laundry soap that is real soap; not detergent.
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My only thought with zinc cream is that for little ones it says 3 mg and 5 mg for older little ones (H's age). Is zinc absorbed and accumulated through the skin adding to the rda? If so, how much cream adds how much to the rda? As we discussed before, one of the side effects of too much zinc is vomiting, diahrea, and abdominal pain (the appearance of more gi issues). I know you are working with a dr prescribing, Eloys. Any thoughts?
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I haven't yet spoken about overdosing in detail but my naturopath says that 80% of Australians are chronically zinc deficient so there is not really much chance of overdosing for 80% of people. I have been on high doses for years of zinc- apparantly not high enough - I still fail zinc tally tests dismally. I know its probably because I have toxic levels of copper in my body due to 13 years on the pill and copper pipes for our water. If Copper is high, zinc is very hard to increase. Anywa,y as I said before I will know exactly our situation with zinc and Copper levels in the blood in 2 weeks!
I really don;t kno how much gets absorbed through the skin, will definantly ask at next appts. I am guessing - not much. But Jean, you might know a bit more about that?
Jean, how bad was your skin before you started the oils and vinegar treatments? Did you have hormonal acne at all?
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I kept getting cystic acne. It never went away completely during the month. Sometimes it would coincide, but not consistently though. So, I thought it could be hormonal. I would say that over a few months of the real soap (made with potassium hydroxide, olive oil and water only), vinegar, and a multivitamin, things were getting clearer and clearer with less and less flare ups. I suppose it depends on the underlying issue, and the issue can vary from person to person.
I remember reading in this book a list of how all the vitamins/minerals are important and for what skin conditions. http://www.amazon.com/gp/product/1580171303?ie=UTF8&tag=wwwstephaniet-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1580171303 I remember reading about vitamin A (valuable enough that people use retin-a for acne) and thinking that could be missing. Zinc was mentioned, too. Being on low sals for such a time (eating with H) and not drinking milk much could have been a factor in my vitamin a being low, too. Lots of vitamins/minerals work together and to make healthy skin.
As for the copper, can you buy a reverse osmosis system to filter your water? Or will one of those filters for the faucet work? I should check to see if ours filters out the copper; we added an ro system about a year and a half ago when we added a water softener. We actually got our ro installed free because the guy didn't show up to the intial apt (and we were going to contact someone else).
It is hard to know how all these chemicals, minerals, vitamins react and inactivate/activate each other. How long does copper stay in the body from the pill?? I didn't even know it was in there, but I don't know much about copper in general at this point.
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Thanks Jean. As I understand it, being on the pil, causes the body to store copper. I will try to find out the mechanics.
I need to check my water filter, I don't know how it works, and I don't regularly drink water from it. I use the tap alot too. :P
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I use our reverse osmosis water for cooking and drinking now. It also is connected to our refrigerator, so that is also double filtered (because the refrigerator has a filter, and it will only run with a filter in it). I know it is filtering out a lot of minerals too. :-\ But it is also taking out other things that we don't want. Hard decisions.
But after reading about fluoride, I am fine with that being out of our drinking water, too. Fluoride toxicity can also appear as gi issues, too, like abdominal pain, vomiting, diarrhea, nausea. With H consuming so much formula (due to soothing his reflux symptoms), it has made me wonder. Our city is pretty high (despite the epa warning; last I checked it we were almost double the new epa recommendations). Frustrating.
For anyone else in the US and wondering about your fluoride (if you get your water from a city water dept), you can read the EPA and HHS post. Your city will list flouride on its city water report. http://www.hhs.gov/news/press/2011pres/01/20110107a.html Ironically it was the dental hygenist (sp?) that mentioned it to me and cautioned us against any more fluoride with H's history of significant reflux. I had asked if our non-fluoride toothpaste was ok, and she was initially saying we should use the fluoride one. Then did a uturn with the mention of the reflux and said stick with the non-flouride one from cleure (salicylate free, too).
http://www.ewg.org/comm/proposed-federal-cap-fluoride-water-will-not-protect-public-health
The epa and hhs mention the concern about dental fluorosis (actual weakening of the enamal with the consumption of too much flouride), but if you google symptoms of flouride toxicity, it mentions gi isses. I was tryig to figure out why the hygenist would mention gi issues , when the epa only mentions dental flouorosis. I found the gi issues by looking at fluoride toxicity. We go to a regular run of the mill dentist (not a specific natropathic one or anything like that).
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I did find out that our reverse osmosis takes out over 90% of the copper in our water (we also have copper pipes).
And with H turning 4, we will be able to have him take a whole vitamin (that has 20% of rda of zinc). Only half the vitamin will be taken for kids under 4, so that is what he has been taking. I am curious to see if the extra bump in vitamins and minerals from the supplement will have any effect (since we will be doubling it according to the age/dose recommendations).
Kirry, I was also thinking about adding a humidifier with regards to the dry skin. Maybe it running overnight would be an additional help.
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Jean, My biomed Dr says that the zinc dose should be 1mg/kg for babies and kids. I am not sure if this is for the zinc deficent or everyone. Will find out for a week. And for adult 1mg/kg + 20mg.
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Just thought I'd pop back on here since we'd been having a zinc discussion a bit back... Found out yesterday that I am quite deficient in zinc (65) and my holistic practitioner wants me to take 50mg of zinc picolinate/day and retest in 6 weeks. Hoping it doesn't upset my stomach!
Also found out I'm gluten intolerant and have Hashimoto's, but that's another story...
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Wow Karen! Knowledge is power though! We are all on zinc piccolinate too. Apparantly that form is well tolerated. Zinc will heal your gut for sure. Not sure what 65 is though, here the recommended zinc range is 14 - 20 from a zinc plasma blood test.
What's hashimoto's - I have heard the word before.
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My results show that zinc, plasma or serum, should be between 70-150 ug/DL. And in the middle to higher end of that range is really where you want.
Hashimoto's is an auto-immune condition where your immune system is attacking your thyroid. More info here:
http://www.womenshealth.gov/publications/our-publications/fact-sheet/hashimoto-disease.cfm
http://drknews.com/changing-your-diet-is-the-first-step-in-addressing-hashimotos/
Often people with Hashimoto's are already gluten intolerant but in any case, gluten makes Hashi's worse. I do also have a high IgG reaction to gluten it seems. For now the rest of my thyroid levels were normal but it does explain (somewhat) why I'm always so tired and achy and all!
Today was the second day on the zinc and I did have some stomach cramps last night and a bit this morning but nothing too bad...
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ahh yes.... the US ranges are different and I need a conversion table for comparing values for our system.
Wow, you finally have some answers.... you must be on a bit of an information quest right now eh?
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Yes very happy to have some answers but still awaiting more - the results of the full IgG panel (guessing will be early next week). And still getting these rashes on my fingers and hands - so itchy! Now thinking tree nuts might not be the cause since I haven't had any in 3-4 days but have some new patches since yesterday. Sigh.
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It's only on the hands? Is it anything you are touching with your hands in particular like a hand lotion...we touch so many things; I wonder if it is contact irritation from something environmental?
Hugs for the mystery; the origin of them seems to be difficult to pin down.
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And still getting these rashes on my fingers and hands - so itchy! Now thinking tree nuts might not be the cause since I haven't had any in 3-4 days but have some new patches since yesterday. Sigh.
FWIW - with your recent dietary changes and added supplements your body needed, it could be possible your body is doing some detoxing - which could explain the rash. When we started juicing more/upping probiotics ect. my hands also got itchy for a short period of time. Oddly enough, it was usually after I peeled veggies. Within a few days however, my "die off" reaction of the detox started to subside, and so did the itchy hands. I always make sure we're doing plenty of epsom salt baths to help get all the gunk out and lessen the detox symptoms.
Where do you ladies find your zinc supplements? The only one I've been able to find has been zinc citrate. I haven't heard of zinc piccolinate.
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you can buy it online very cheaply from iherb - this is where I get my supps - cheaper than buying in Australia!
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Terrific, thanks! :D I'll check it out.
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Not only on my hands but that is the main area. I also have an ongoing rash on my chest (especially around my left breast) and the back of my neck is very itchy, as is my scalp. But the fingers are the area where I get itchy bumps that turn into cracks and cuts if not healed. This all started BEFORE the diet changes though. Oils seem to make them worse (my fingers) but only if they are already irritated. So frustrating!
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That is frustrating, and it sounds painful! :( I hope you're able to sort it out soon. ((hugs))
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That is a puzzle!
Shampoo? Any changes there? I have done a bit of the "no poo" or no shampoo thing. I wonder if that could help, but it may not be related. Just tossing out a crazy idea. XXXXXXXX
Here are a couple of websites about it.
http://thehairpin.com/2011/04/how-to-quit-shampoo-without-becoming-disgusting
http://asonomagarden.wordpress.com/2009/04/03/my-no-shampoo-hair-saga/
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I do know that zinc helps skin conditions immensly, but I realise that the skin only heals when the gut is healed, and zinc basically helps heal one's gut. For my zinc, it will take about 6 months of supps to get to a decent level in the blood and beat down my high copper levels, so I am not expecting any major biochemical changes or gut changes until then. For now though I can gratefully say that I have not suffered any anxiety at all since being on my new supps, (I am also on activated b6 and magnesium and well as methionine). They said I would notice behavioural improvements and sleep improvements within weeks but the rest takes months.
It would be worth asking if you can get testing done for pyroluria (urine testing) and well as blood histamine. Low zinc people *tend * to have pyrolles, and if you do have it means your body cannot take up zinc or b6 at all and you need a special formula of supps so that your body can absorb these and often it means long term supps until you can get the zinc levels up. Blood histamine levels are related too to all this and compounds the zinc situation. I am on a facebook page of pyroluriacs and and finding a whole new world out there - and learning lots about this conditon everyday. I have it borderline and Kai has is moderately.
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How are things going for you and K? I hope things are improving!
My only thought with you mentioning that oils are bothering your skin is that lots of "natural" shampoos have lots of essential oils. Many EOs are actually skin irritants as well. With you mentioning your scalp, hands, neck particularily, and your left breast...It sounds a lot like shampoo. I was wondering if you have longer hair and it often rests on that left side while washing.
http://www.essentialoils.co.za/irritation.htm Here is a site to give a basic idea. The soap books I have read mention this factor, and the books often have a chart outlining which ones can be skin irritants. If I come across a better list online, I will let you know. I think I can remember a good one from a soap making site, but I don't know where it is at the moment...
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I'll check that out Jean, thanks! Though I've been using the same SLS free shampoo and conditioner for a while now and it doesn't seem to help or hurt matters and I don't wash my hair every day at all. Grrr.
Eloise, I looked that up (interesting) though I don't have any of the emotional symptoms. But will ask my practitioner about it. Maybe I just need to give the zinc more time anyway though as it's not even been a week.
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Its worth asking. Kai and myself don't have the symptoms except I am a fairly anxious person but I have come up as borderline and Kai has it. It is genetic though. Some of the basic symptoms fomr memory are: anxiety, depressionm, panic attacks, mood swings, sensitivity to drugs and medications, all day brain fog, poor dream recall, ridges and white spots on nails, family history or alcoholism or mental health issues.
Oh yes, Zinc takes months to build up... did you get your copper tested too since both are hand in hand, if the copper is high is must be actively brought down at the same time as increasing the zinc.
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My full IgG results should be back early next week and then I'll have a follow-up phone appt with my practitioner so I'll ask her about it then. I don't think she did test my copper levels though. What can one do to actively reduce them? I wouldn't be surprised if they are high, and I do know that I have a nickel allergy too.
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Its worth asking. Kai and myself don't have the symptoms except I am a fairly anxious person but I have come up as borderline and Kai has it. It is genetic though. Some of the basic symptoms fomr memory are: anxiety, depressionm, panic attacks, mood swings, sensitivity to drugs and medications, all day brain fog, poor dream recall, ridges and white spots on nails, family history or alcoholism or mental health issues
This is interesting, Eloise. Have you ever watched the documentary "Food Matters"? They explore high dose vitamin therapy and how it can be used to treat/cure so many illnesses, including what you mentioned above. They actually speak specifically about alcoholism and depression being directly related to B6 deficiency. Believe it or not, the founder of Alcoholics Anonymous actually discovered this about the B6 deficiency and wanted to use high dose B6 therapy to treat alcoholics. Of course, then the FDA came in an suppressed any further treatments. If you get a chance, check out Food Matters - its pretty amazing. http://foodmatters.tv/_webapp/Food_Matters_-_Online_View
Do you believe that gut flora also plays a role in what you're talking about with the pyroluria? I would assume that if the gut flora is not in good health the body will not be able to absorb the nutrients it's deficient in anyways, correct?
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I haven't seen the movie but flagged as a " to do" :)
You have hit the nail on the head. Can I add one the symptoms of outpolled are abnormal fit flora, gut dysbiosis, IBS and food intolerances. Many of the puroluriacs I have met have hit problems.
50 % of alcoholics tested by Dr Walsh of Walsh institute ( over 20,000 people tested) have pyroluria. 40% of schizophrenia sufferers too. It also has high incidence in people suffering depression and anxiety. My husband is getting test as he has a strong family history in these areas and he has signs of low zinc, as well as brain fog - (I thought it was dopey husband stuff!)
The experts on this condition believe it to be one of the underlying reasons behind gut flora issues because b6 and zinc are required for over 200 enzymatic processes and for detoxification
Pathways, production of musin the line the gut and proper functioning of enterocytes in gut lining. Without b6 and zinc one will have lowered immunity and susceptible to infections and overgrowths such as parasites, candida, bacterial overgrowths etc. the role of diet is paramount in the treatment of pyroluria and the recommendation is usually something along the lines of the GAPS diet. But a pyrolle needs mineral and vitamin supplementation to fix the cause too.