Diary of putting my family on the RAPH diet

[hrk]

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!

[sherry lynn]

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.

[hrk]

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

[EloysH]

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. 

[tigerlilly905]

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

[kim&savannah]

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.

[EloysH]

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.  

[hrk]

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!

[kim&savannah]

 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.

[tigerlilly905]

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!

We got the most poops from Ds2 ever yesterday - 5!! 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 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.

[EloysH]

Rebecca, double yay for good poops.  I couldn't imagine having a 17 months old with loose poops... nappy changing hell 

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!!!!!  

[kim&savannah]

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.

[tigerlilly905]

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 )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

[sherry lynn]

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)

[kim&savannah]

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. . .