Wheat, corn, dairy..delayed allergy and diet

[Dom&O]

This may get long, so please bare with me.

A little background, my DS has suffered with severe reflux, vomitting, and food refusal. We just got the delayed gastric emptying dx a few weeks ago, but he's had it for at least a year. He also has eczema.

We noticed a dairy and soy intolerance at 6 months old and I removed all traces from our diets (mine to as I'mBFing). Symptoms were mucusy poops, screaming at night, eczema flares, reflux flares.

His skin prick are negative to everything, they only tested blood for milk and soy, both negative. I'm still suspecting a true allergy to milk, as his reaction is always pretty immediate (well within 10-20 minutes he breakes out with eczema all over). We had him patch tested a week ago and it was positive for wheat, corn, and dairy. In fact, the wheat circle is still there. So, this means he has a delayed allergy to these foods. However, the doctor went on to tell my husband that my son is allowed to eat whatever he wants because its only a delayed reaction, and its up to us if we want to remove those foods.

I'm still putting a few oz. of BM in his bottles (still drinking around 28 oz of liquid nutrition = elecare/BM a day due to food refusal). I'd like to quit pumping as two years of EPing is enough for me! So my plan is to stop pumping and then start him on an elimination diet to see if the GI symptoms get better and maybe his gut will heal and he'll stop refusing food (this is my DREAM!).

My main questions are...Would you only avoid the protien in these foods or should I steer clear of all derivitives. We do so with dairy, but I know corn and wheat are in practically everything. I'm planning on getting a cookbook (any recommendations?) and baking him bread, etc. as he is VERY selective about what he eats, if he even eats at all.

And on top of these restrictions, his diet also needs to be low in fat and fiber due to the delay in gastric emptying..high fat and fiber foods make it worse.

I'm so dreading doing this but at the same time looking forward to the results, and seeing if it helps him feel better.

I'd love any advice or any personal stories, websites, ANYTHING you want to throw my way to help guide us in this journey! TIA!

[kjbrown92]

up in the resources sticky there's a link to recipes. If you're trying to get to baseline, I'd remove all derivatives of the food. After you get to baseline, the you can see if the derivatives are okay.

[mamafish9]

Most kids who have "delayed" reactions to foods (which we call intolerances on this forum) can react to any/all parts of a food - so not just the proteins.

And if your son reacted to corn, elecare has a ton of it.

Food refusal is often a food reaction - their tummies hurt and they turn down food (but want to nurse constantly, because breastmilk temporarily makes things feel better).

Dairy, soy, gluten, & corn are the top 4 intolerances, and it sounds highly likely that your son reacts to all 4. If he does, getting off the elecare might actually make things better.

Any chance you can go off all 4 of those foods and work on increasing your supply for a couple of weeks? If he could get off the corn, he might be more willing to try foods - but there's probably a transition time in there where lots of breastmilk might be important.

Are you EPing because he won't nurse? If so, there may be sensory issues involved as well, and an OT might be a huge help.

[Dom&O]

Thanks for your replies.

O M G. Now I don't know what I am going to do. You have to understand, getting him on Elecare was an entire process in and of itself because he is such a refuser. I literally had to add a half a teaspoon at a time.

Please don't think I'm selfish, but I REALLY want to stop nursing/pumping. Yes, I did nurse him until he was five weeks, but he never really got the latch down, and besides that once he did latch he would pull away due to the reflux. He has sensory issues, and in OT already for them (but soon graduating as they have lessened considerably).

I don't think I can get my supply back to where it was...He needs about 30oz a day..right now I'm only making 12-14oz.

Looks like I may not have a choice though.

[mamafish9]

You've pumped for almost 2 years - not selfish at ALL!!!

I'm thinking though that if corn is an issue, temporarily increasing your supply might help get him to "baseline" where he feels more comfortable and might accept more foods. Often reflux is a sign of food intolerances, and his symptoms may have just shifted now to a sore tummy or something else that is harder to see.

My son is autistic, I have some idea of how daunting this is, and you have all my sympathies!!

If you could get your supply back up to 20oz, that's enough to hold him through a few days without starving (so you can pull the elecare and start trying some other foods).

Have you ever tried any alternative milks, like coconut milk? I'd start with coconut milk from a can, no additives, see how that might work for him, maybe just sneak a little into his BM + elecare bottle.

Also, how does he react to Epsom salts baths (2c in a warm bath for 20 min)? Sometimes sensory issues are really helped by magnesium.

[Dom&O]

I've thought about your reply all day, and your right, I know I have to get my supply back up and go on the elimination diet with him.

But MAN, it is soo disheartening, I was sooo close to being done! And I've been off dairy for 1.5 years, so I was really looking forward to a pizza!

I think after a good cry, and a trip to whole foods I'll be geared up to see this through..

How long should I do the complete elimination for (no dairy, corn, soy, oat (has issues with oat too), and wheat) Is a month long enough? Then just add back one at a time to check for reaction?

Thanks again for all of your help!

[Dom&O]

Forgot a few things:

Regarding alternative milks, I've tried to give him rice milk, he didn't really go for it. Although, my plan for weaning was to replace my BM with rice milk, so his bottles would be 1/2 Elecare and 1/2 rice milk (instead of BM).

Epsom salts bath...I have not tried that..I will though, thanks!

[mamafish9]

Don't do rice milk if you can find a viable alternative - there was a study in the UK recently that showed it has fairly high levels of arsenic. Fine for small amounts, but I wouldn't use it in the quantities you need.

Coconut milk has a lot of the medium chain fats that bm has, which is why I suggested it as a possible alternative. Also, I think elecare has some coconut oil in it, so he's likely already been exposed (could be reacting to, but one thing at a time).

We saw results within a week off dairy & gluten - it can take up to a month to clear it entirely out of both your systems, but you'll likely see progress much sooner. Corn clears within a week. I'd start on gluten & corn free, and try adding some coconut milk. It may be that you can slowly replace the elecare with coconut milk, and not have to increase your supply too much, particularly if his body starts feeling better and he is willing to try some more solids.

I hope this gets you to weaning faster by solving his food issues - because I so know what it's like to crave what you can't eat (my son couldn't do salicylates, so I spent an entire year of gorgeous local farmer's market fruits and berries I couldn't eat - I finally weaned to have cherries ...)

[mommaklo]

I think after a good cry, and a trip to whole foods I'll be geared up to see this through..

Dont have much more to add, but oh man, I can relate to this. I also have been craving pizza as I am gluten, soy, dairy, fish, egg, and peanut free for baby, gluten free for me.

[tsfairy]

The delayed gastric emptying may likely resolve itself when the offending foods are removed. Wheat/gluten sensitivity can cause a whole range of problems by itself and removing it may make a huge difference.

[rhesp1212]

I agree with tsfairy....my son got a diagnosis of reflux and delayed gastric emptying. It was ALL completely related to his food sensativities!! Once we got him to baseline, all of that went away completely! I was shocked! We were able to stop all of his reflux meds and he was on erythromycin for delayed gastric emptying to help move things through. We were able to stop both of them. He gets Zantac as needed now if he has a flare up related to a reaction, but that's it!

Someone mentioned gluten causing problems....I never thought it could cause such a huge problem until now. My son literally was down to 3 foods, with a tremendous list of foods that he could not tolerate at all, in any form or amount. Once we stopped all gluten (which was one of his staple foods), within a week he was able to eat almost anything!! I'm still amazed as we are currently adding food after food after food back in without any problems! We think gluten was triggering most of his reactions!