still allergic to breast milk?

[bjutka1]

Some of you may remember me from the allergy boards. I have been on a very strict elimination diet for 8 weeks now. My LO is 4 months old now and still EBF. She has improved somewhat (constant screaming 7-8 hours a day went down to about a couple of hours), and is gaining weight very well.

Her symptoms are the following still:
excessive wind (usually wakes her up from her sleep)
very disrupted sleep (30-45 min naps 4 times a day)
very frequent feedings (every couple of hours - doing block feeding so there wouldn't be a foremilk/hindmilk problem)
cradle cap
occassional eczema that sometimes flares up on her cheeks and sometimes goes away - when it does, her skin is beautiful
silent reflux
feeding through the night (every 2-3 hrs)
wakes up from naps and at night in pain - pulling legs up, only settles if I feed her
sour smelling watery poos
sour smelling breath
puffy eyes
red circles under eyes

She is on no medication at the moment, because the Ranitidine didn't do anything and the Losec just made her windier.
My diet looks like this: rice, rice bread, gluten free digestive buiscits and pasta (made from rice and maize flour), rice cereal, rice milk, potatoes, sweet potatoes, carrots, parsnips, chicken, turkey, peas, pears, Pregnacare vitamin supplement and Omega 3, sunflower and olive oil in cooking

I try some vegetables out occassionally - onions, leeks and everything in that family failed, garlic, broccoli and cauliflower and courgettes seemed okay.

Any ideas? Is she still intolerant to something in my diet? Would she do better on neocate? Is her silent reflux caused by allergy and would go away on neocate? Will she improve when solids are introduced?

Any ideas from experienced mummies would be apprecieated.

Thanks,

Jutka

[deb]

I'm looking at the Pregnacare site and I'm not able to find a place where it might mention any additives to the vitamins themselves that might be problematic.

Are you getting any leafy greens in your diet? I'd skip cabbage, broccoli, chard, and kale - the crucifers in general - as they can cause wind, but some steamed spinach and some lettuce would add some good bio-available nutrition to the diet.

Since you're already on an elimination diet, have you tried using any probiotics as a supplement for her? There are dairy-free ones available. Here in the States I know Culturelle has a dairy-free variety, and someone in the UK can probably point you in the right direction. Probiotics are an important part of healthy gut flora and help us digest our food. There are specific probiotics for babies that start out with flora that would normally be there; adults have a wider variety of gut flora.

Also noticing a lot of rice in the diet. Rice was Josie's first solid and we did that for a couple of days before we realized it was NOT a good thing on her tummy. We had to try a number of different grains till we found one that worked, and in retrospect, having learned a lot of things since she was a baby 9 years ago, I probably would have cut out grains entirely and ONLY had meat and veg and fruits.

Legumes might be part of the problem; maybe cut out the peas?

Oh, and what are you drinking beverage-wise?

[bjutka1]

I only have water apart from the rice milk I take with my cereal. And the occassional fennell or chamomile tea. But really mostly filtered water.

If I can't eat rice, what do I have for breakfast?

Deb, do you have a list of safe fruit and veg? Because I'm at a point where I feel that I should really just give up eating... After all this time, I really should have reached baseline but it feels like I'm in the dark...

I told the allergy people about salysalets and other food chemicals but they said it's really proteins that cause problems - in their opinion. But what if they are wrong? I then shouldn't have olive oil, right? And I would use it quite a lot.

I just feel that I have tried so hard and for so long - with very limited results. Very depressing.

[bjutka1]

Thought I would write down a few days worth of my menu - see if you guys have any ideas

A couple of weeks ago I went to see a kineziologist (meant to be a very good one!) and started putting things back in my diet according to her advice. She told me to cut out lamb, asparagus and onions - these were the things she still said Julia was reacting to. But there were a whole load other things that she said should be fine.

2 May
Breakfast: rice cereal, rice milk, rice bread dipped into olive oil and honey
snack: grapes
Lunch: roast chicken with garlic, potatoes and cauliflower, roasted plums with honey and cinnamon
snack: olives
Dinner: roast sweet potato, roast chicken, lettuce
snack: rice bread

Before this she was quite good, but after today, she was very windy and unsettled in the evening and through the night with runny poo at 4am

Maj3
Breakfast: rice cereal, rice milk, rice bread dipped olive and flaxseed oil
Lunch roast chicken with garlic, mashed potatoes, cauliflower
D rice, chicken legs, carrot and parsnip mash
snack: rice bread
a Very bad night, up every hour, lots of wind, mucousy poo in the morning

Maj 4
B: same as before
L gluten free pasta, sweetcorn, turkey thighs
snack grapes, raisins, sunflower seeds
D turkey thighs, chips, courgettes
Windy at night, waking 2.5 hourly but not as bad as night before


Maj 5
Breakfast: same
Snack: blueberries
L pasta, turkey and sweetcorn, olive oil, pregnacare
rice cakes
D potatoes, turkey mince, aubergines
Worst night of all, frequent wakings with wind, and skin rash appeared in the middle of night

Maj 6
B same
Snack, sweet potato, pear
L tukey mince and potatoes (took out aubergine) turnip
snack rice bread, maple syrup, pear
D chicken, chips, trunip

skin rash cleared by midday, still very windy, better night but still lots of wind

Any ideas/ suggestions?

[deb]

I haven't been following your posts specifically, sort of seeing them interspersed with others' posts, and I have a hard time keeping track of whose LO is sensitive to what, and whose LO hasn't yet been diagnosed.

Eloys would be the one here to ask about sals. If you're eliminating primarily for those, that's a whole other set of foods to look for and a set to avoid. We use coconut a lot here but that's a higher-sal food, if I remember rightly. (You'd think I would having asked about it so often LOL) If your allergist isn't really conversant with sals, though, I'd demand to see someone who is familiar with them. Not sure who would help there, though, as I'm not conversant with your health care system at all.

Here I'm finding we're feeling really good without grains, or grains as seldom as we can use them (or as seldom as I can get DH to use them when I'm not around ). For breakfast as often as not it's eggs (which you're eliminating at this time but may be able to add in later), and if not that, I've been known to eat supper leftovers for breakfast, for real. A chicken thigh makes a very satisfying breakfast, for example, as does pretty much any kind of meat. Takes a while to shift gears into not having "traditional" breakfast food for breakfast, but some people do "breakfast for supper" from time to time. I also have been known to cook millet and/or quinoa for breakfast, and if you soak grains overnight (8 hours) before cooking them, they cook faster AND are easier to digest, so on my way to bed I'd measure out the amount of water I'd need to cook the grain, put it right into the cooking pot with the grain also measured, and in the morning turn it on. Takes a good long while to get up to boiling and then cook too, but some people also use a slow cooker on a timer to start it cooking before waking up. Quinoa, millet, and buckwheat are all gluten-free as well, and if you're able to get oats that are certified gluten-free, that can be used for cereal as well. Oh, and if you soak rolled oats overnight, they cook up in the morning in like 5 minutes. Here's a list of gluten-free grains besides rice and corn: http://glutenfreenetwork.com/gluten-free-cooking/what-grains-are-gluten-free/ Note comments there about rice reactions, BTW.

I found that when I drank rice milk while nursing Natalie, she had spinach-green poops from the carageenan in the rice milk. (Someone here on BW worked out the connection for me.) I had to stick with Rice Dream only till she outgrew her sensitivity - the store brand was a lot less expensive but had carageenan in it for texture. That might be part of it, anyway.

Was she on a weight-appropriate dose of the Ranitidine? It's quite weight-sensitive and lots of times it seems that it's not working and either the dose started out too low or the baby gained weight so the dose became too low. There are other med options besides Ranitidine and Losec; has your paed had anything to say about those?

Here's a link to the CRC board - http://babywhispererforums.com/index.php?board=13.0 - and a particularly helpful sticky about treatments for reflux - http://babywhispererforums.com/index.php?topic=175920.0.

Oooh, you posted just before me! You might try eliminating potatoes and courgettes, which are both members of the nightshade family (along with tomatoes and peppers); some bubs are sensitive to those.

[*Liz*]

Hi 

This degree of ED really is out of my depth so I will try and find some help for you on that score.

But the silent reflux - is that medicated at all?? Any investigations at all??

What I am thinking is that even some very food sensitive babies also have pure anatomical reflux that they need medication to control. My DD is outgrowing MSPI, but still needs her reflux medication, so she obviously did have bog standard reflux as well as the food sensitivities.


What are poops like? Any blood or mucus?

[bjutka1]

Meds for reflux were trialled before but didn't work. Poos are mucusy, runny and sour smelling but no blood.
What is the farting pear food guide? I read somewhere about it.

[deb]

If you only trialled 2 reflux meds, you may have ended up stopping looking before you found one that works.

If she's still in reflux pain, she will be feeding more frequently than she should, and feeding every 2-3 hours at 4 months, including nights, is too frequent, so I'm thinking she's still in discomfort. The too-frequent feeds may in and of themselves be contributing to the problems with her tummy: wind, gurgling, etc.  It might be worth investigating that avenue again.

When she was on ranitidine, how much did she weight and what dosage was she on? It's possible she was undermedicated. Also, it can take a week or more to really make a difference. Josie was a different baby in 24 hours, but many babies have a more gradual improvement even if that's the most effective med for them. And if the dosage was a little under for her weight, it might not have been enough to make a difference.

Losec is outside my realm of experience, but since it caused other digestive issues for you, it would make sense not to trial that again, at least for a while.

[EloysH]

Hi  

Wow that you have been on this diet for so long and so committed to breastfeeding  


It seems you have eliminated all irritating proteins so the allergy clininc that is helping you needs to help you with a next step, the proteins simply aren't in your diet.  Your diet is very high in natural food chemicals such a salicylates and amines, so if you want to try and eliminate these, you can try the RPAH diet. See here for relevant links.  

http://babywhispererforums.com/index.php?topic=189899.0

 If you still really want to breastfeed and don't want to do a neocate trial then personally would try the RPAH diet for 4 weeks and see if she improves.  I am suggesting this diet as you have tried everyting else and these kind of food intolerances are much more common that we realise.

It does sound like her reflux needs meds trial again, sometimes we just need to up the doses and tweak for a while.The symptoms you describe as not improving are more related to lower gut and probably diet related. For reflux meds it is the upper tract that we are getting comfortable, primarily.

I would say that food intolerances and allergies are usually in addition to anatomical reflux - they certainly were for both my boys.  So both conditions/issues needed to be treated separately with meds, alternative therapies and diet.  Of course some babies do onyl have relfux as a side effect of food intolerances, if that were your case you could still get no the emds to get uinder control and once the diet is working you could go off meds and see what happens.

If you could find a paediatric allergist, or dietician versed in food chemicals that would be helpful.


A neocate trial would let you know how much of your diet is irritating her.  If she improved greatly in a few weeks then you would know.

Many hugs and let me know if I've answered your questions.. xxx

[bjutka1]

Thanks for that, Eloise! So you really think she is food chemical intolerant? Could it not be say a fructose intolerance (something I have just read about) I am sooo tired of all this. I really am struggling. She hates neocate, I tried but can't face to go through putting her on it again.

What's jumping out at you from my diet - what's the worst thing that would annoy her?

If I start weaning, will that not improve things? When would you expect her to grow out of this? Or do you not grow out of food chemical intolerance?

[*Liz*]

Meds often don't work when they are very tiny colicky babies (as they are just too little and too unsettled for us to see the wood for the trees iyswim?).

I would have thought it was worth revisiting before switching to neocate especially since you want to BF and avoid the introduction of elemental formula. It is hard to get a 4+ mth old to accept it but it can be done.

(((hugs)))

[EloysH]

Has she ever had a stable period of time with no lower gut symptoms on this diet??  If so then I would say she is probably not food chemical sensitive.  However if she has been up and down and windy and mucus poos the whole time on the diet then I would say it is something you are currently eating incombination with reflux.

If you are up for it I would try the low food chemical diet, it involves eating foods low in amines, salicylates and glutamates for 4 weeks, and yes I really do think its your best bet.  If she improves, you can go through the systematic food challenges to identify culprits.  I have a food challenge protocol I can send you if you go down that route.

If she is food chemical sensitive, yes they do become less senstiive with time.  For example K could only tolerate low to mdoerate through my milk at 3 motnhs old, now he can tolerate quite a high amount of highs all eaten directly at 13 months.  But then I have another friend who is has a baby with ther same issues, and at 14 months he still only tolerates low foods and 5 teaspoons a day of moderate.

[*Liz*]

The other thing about the diet Eloys recommends is that it has a defined structure and plans for all the food challenges. It gives you a strong basis to work on and as the foods are all grouped it increases the range of foods you can eat and also that your baby can have once they start on solids themselves.

It is also sound and nutritionally balanced to meet your requirements for BFing and your babies ultimate growth.

For example - you need to make sure your calcium requirements are met - and an antenatal vitamin is not sufficient of there is no additional calcium in your diet as they only provide about 20% of the RDA.

I excluded dairy, soy and gluten when I was feeding but did look at further EDs but decided that I couldn't commit to it while I was feeding my whole family. With that approach i accepted that sometimes I would get mucous and unsettled behaviour, but I decided I preferred that to FF. I did check with my paed that I would do her no long term harm with this approach though.

[bjutka1]

Trouble is I kind of have done the low sal diet. For a good 4 weeks this is how my diet looked like:

Protein: chicken, lamb, red lentils (very rarely)
Carbo: potatoes, rice (not even gluten free pasta or buiscits)
Frut: pear, golden delicious apple - peeled
Veg: carrots, parsnips, squash, sweet potatoes, cauliflower, asparagus, brussels sprouts, peas, onion, garlic, celery, shallots, leeks, swede
Fat: sunflower oil, pure sunflower spread
Maple syrup
Drink: filtered water, rice milk
spice: seasalt
Snack: rice cakes

The meat was bought fresh from butchers and eaten or frozen. I wasn't so stict with fruit and veg.

With this diet, she settled a lot more during the day and was happier but still only catnapped and was up at night every hour or 2 (or 3 if I was lucky.) There never was a time when she was completely settled, slept and napped well and had consistently good poos.

Then after my visit to the kineziologist, I took out lamb, onions, lentils and asparagus as she said she can't tolerate these but added other things in that are quite high in sals like blueberries, aubergines and most of all, olive oil that I used very frequently. I was laso worried about essential fatty acids that why the olive oil seemed like a good choice. However, this past week she is defo a bit worse than she was a couple of weeks ago.

Don't know where to go from here. I could try going back to low food chemicals as you're suggesting. Anything in this previous diet that you think I have done wrong and why she never settled properly?

I do think it's a lower gut problem, reflux is only due to intolerance. Tbh, I'm getting fed up now - feel like I have done so much and have taken out so much and yes, she is better but nowhere near where she should be. Good news that this won't do her long term harm. I sometimes feel I'm being stubborn and selfish for breastfeeding and should just put her on neocate and end her suffering. (and mine) But then something always holds me back - she was terrible when I tried it a few times - screaming and not taking it.

[EloysH]

Wow, 4 weeks well done again    I really hate to pick apart your ED especially when I completely understand how much effort and siffering go into it. But there are a couple of high and very high salicylate foods in there, and just one is enoguh to tip the scles of they are sensitive

 So everything is ok except for:  onions - very high  (dose of 100 in chemicals, where as a low is 1, and a high is 10). Parsnips, squash and cauliflower are highs also. Golden delicous peeled, carrots  and asparagus are actually moderate and would only be allowed on limited serves  like 1-2 per day (1 serve = 100g or one cup). 

For breastfeeding mothers, the recommendation is to go on the moderate chemical diet but watching the no or moderate serves. So my conclusion is if she is food chemical sensitive, she wouldn't be able to reach a baseline on that ED. 

 There are other foods you can eat on that diet like most beans, legumes, and gluten free grains if you want to try again.   

It sounds like she was better on the first diet which is lower in sals (food chemicals) so there is some food for thought.
Another point - the meats can't be slow cooked or fried till charred.  They will be high in amines.

Well for the record I've done kineasiology for Kai too, as well as a full course of NAET    I found that whilst this has strengthened his immune system and rasied his tolerance for these foods they aren't completely "cured".  The theory is that there is still an inherited toxic load  in his body and also alot coming from the environment and food.The load is a problem for him because  he doesn't have all the enzymes developed yet to tolerate food chemicals, his organs are still working over time to clear all the stuff out.  He just needs more time  Its all very hocus pocus but just some food for thought    Feel free to ignore 

On the fructose  - I have no idea.  Maybe a good GI or paediatric allergist could help???