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Protien Allergy In Infants And Celiac Disease

cgilsing

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cgilsing Enthusiast
cgilsing
Posted

Both my children (now 3yo and 5yo) were diagnosed with severe protien allergy as infants. They were on nutramigen AA for the first year, and elecare until they were 2. Other than their formula they were on a strict meat free, milk free, egg free, soy free, bean free diet. At about two they were each given a clean bill of health. However, we have some lingering problems. They are both very thin, prone to diarreah and skin problems. I have celiac disease as do several other people in my extended family. Because of all this my sons went in this morning for the celiac blood test. Because it has been so long since i have been diagnosed, I went home to do some searching in hopes that the test is now accurate enough that they wont be subjected to the endoscope. I didn't find anything conclusive on that (and if anybody knows please tell me!), but I did find an artical that said that a biopsy of a child with a milk protien allergy is indestinguishable from that of someone with celiac disease. It got me wondering if there is a relationship between children with milk protien allergies and the development of celiac disease later. Does anyone know?

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Metoo Enthusiast
Metoo
Posted

Both my children (now 3yo and 5yo) were diagnosed with severe protien allergy as infants. They were on nutramigen AA for the first year, and elecare until they were 2. Other than their formula they were on a strict meat free, milk free, egg free, soy free, bean free diet. At about two they were each given a clean bill of health. However, we have some lingering problems. They are both very thin, prone to diarreah and skin problems. I have celiac disease as do several other people in my extended family. Because of all this my sons went in this morning for the celiac blood test. Because it has been so long since i have been diagnosed, I went home to do some searching in hopes that the test is now accurate enough that they wont be subjected to the endoscope. I didn't find anything conclusive on that (and if anybody knows please tell me!), but I did find an artical that said that a biopsy of a child with a milk protien allergy is indestinguishable from that of someone with celiac disease. It got me wondering if there is a relationship between children with milk protien allergies and the development of celiac disease later. Does anyone know?

I am no expert. But Celiac is genetic. It is very likely your children have it. The blood test has a 30% failure rate, it will negatively report someone as not having celiac, when they actually do. Its even more inaccurate in children. You don't need an actual diagnose to have them eat gluten free if the tests are negative and you don't want to go through the scope.

Milk allergies/food allergies in general can be a secondary symptom of celiac, because the auto immune system is so over active from gluten.

pricklypear1971 Community Regular
pricklypear1971
Posted

My son was assumed to be milk protein intolerant. I thought soy, too. He was on breastmilk (I was milk, soy free - I hated life) and Nutrimiagen. So far he tests - for Celiac, but does have some low vitamin levels. We will trial gluten-free/df next month.

Hubby was milk protein intolerant, too, as a newborn.

Stepson has a milk allergy he has not outgrown. And judging by his health when he was here last he needs to get off the milk and pronto. And he said he doesn't like eating wheat because it makes him feel bad. Geez.

cgilsing Enthusiast
cgilsing
Posted
  • Author

I do know that at least in the beginning there was more going on than just celiac disease or a gluten intolerence because i was gluten free during my pregnancies and neither of the boys had ever been exposed to gluten until they were well over two. However, gluten would have fallen squarely in the do not eat list for them because it is a protien.

You both mentioned trying the gluten-free diet before getting a conclusive diagnosis. It is so tempting to do, and my husband and i have talked about it. My fear is that if it is celiac and we cure it, they will never get a diagnosis. The thought of ever intentionally eating gluten to me is horrible, and my doctor has said a person would have to do it for months for it to show up on a scope. If a cure was ever developed the kids wouldnt be eligable for it without a diagnosis....

pricklypear1971 Community Regular
pricklypear1971
Posted

My son had a full Celiac panel done and had vitamin deficiencies. Sometimes in kids that's all you get.

Its a trial. If there's a difference we'll go from there.

Sometimes you just can't sit there and watch, wondering. I can't ignore his behavior and keep grounding him if he's having a neuro reaction. It just isn't right or fair.

That said, he's grounded today...

cgilsing Enthusiast
cgilsing
Posted
  • Author

I hear you, Its not an easy decision. We should get back our boys' results in a week or so. Im probably jumping the gun even worrying about it before then. I hope your son doesn't have too bad of a day!

pricklypear1971 Community Regular
pricklypear1971
Posted

Oh he deserves it. I think of a brain on gluten like a drunk... You can try to reason with them but you're better off waiting til theyre sober.

It's hard waiting for results. Harder to figure out what to do with them if they are inconclusive.

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StephanieL Enthusiast
StephanieL
Posted

Many Dr.s are willing to say yes if you a) have a genetic link to someone with celiac disease (parent or sib), B) test + on blood work and c) respond to the diet. I would ask your ped about this.

Skylark Collaborator
Skylark
Posted

Do you have the link to the effect of milk allergy on biopsy? I'd really like to see it.

If your kids have positive blood tests it's very reasonable to ask that they not undergo endoscopy. Some Drs will diagnose with a celiac parent, bloodwork that falls on the gluten-free diet, and a big response to the diet.

cgilsing Enthusiast
cgilsing
Posted
  • Author

Thanks fo the info about the scope! If it comes down to it, I will push to skip it. Here is the link I ws reading. Particularly the second paragraph under small bowel biopsy.

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Skylark Collaborator
Skylark
Posted

Thanks fo the info about the scope! If it comes down to it, I will push to skip it. Here is the link I ws reading. Particularly the second paragraph under small bowel biopsy.

Open Original Shared Link

Interesting, thanks!

I hope you get your kids doing better.

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