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Non-celiac Wheat Allergies?


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FeedIndy Contributor

My daughter is 10 months old and has weight issues for 6 months (about since starting cereal). She has tons of other celiac symptoms and it was the first test her ped ran after a CBC and MP. The results came back negative for celiac, but while we waited for the call we put her on gluten free anyway. She immediately started getting better. By day 2 she had more energy, better diapers, and just in general seemed happier, though she's always been a happy baby.

When the doc called with the negative test results I was actually stunned because of the results we were seeing. He encouraged us to stay gluten free for 2 months and plans to refer her to an allergist at her 1-year checkup. Then a week later we took her in for her lingering cold because we were leaving town and I didn't want to find out there that it was becoming an ear infection. She had gained 4 ounces in just a week on gluten free!

I was just wondering what other types of things anyone might have experience with that would react the same as celiac.


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AndreaB Contributor

A wheat or gluten allergy is different from a gluten senisivity/intolerance.

If you want something in writing, contact enterolab and see what the youngest age they can test is. They say you can be gluten free for a certain length of time but I'm not sure that length of time would be the same with little ones. If you want to check it out Open Original Shared Link

A positive dietary response is all you need if you are satisfied with that. Did you have gene testing done?

RiceGuy Collaborator

As I'm sure others will point out, it is quite common for young children to get a false-negative from tests. I don't know which "official" tests are the most reliable, but you've already gotten an answer from the best test known - the gluten-free diet. I don't suppose you'd be too quick to put your child back on gluten no matter what test results you get.

For other allergies and such, I suppose dairy/lactose/casein would be among the top ones I'd be cautious about. Then there's soy, tree nuts, peanuts, corn, eggs, nightshades, etc.

I hope you get all the answers you need, and it seems like you've already made great progress.

jayhawkmom Enthusiast

My daughter is allergic to wheat. She also has Celiac, but she IS allergic to wheat as well as intolerant to it. Gluten intolerance is something that most doctors don't seem to "get" yet. She can be intolerant without having Celiac. I agree, if a gluten-free diet works... who cares what the tests say! =)

dawnd Newbie

Enterolab told me it takes 2-3 years for the antibodies from the gluten to clear away. My son has been gluten free for 1 year and they said he does not have to return it to his diet to be tested. DAwn

mrsnj91 Explorer

We had a similar story just without the celiac testing. My Dd was 8-9 months old when I noticed something wasn't right. I knew it was related to items with wheat in it but wasnt' sure if it was wheat or something else. I would give her crackers, get a reaction, take her off and clear up. I did this cycle for 4 months with dr. visits inbetween. My final frustration was right after Christmas when my DD started with hives. I KNEW it was not in my mind or something to write off and so I called the dr and demanded a referral. This took us to an allergist. We 1st did a RAST test and got neg. all the way. Then we did a SPT and got neg. It was two days later that I noticed a welt in the area where #7 was tested for the SPT....wheat. She did not have immediate reactions but rather delayed. However in my testing and research I found many similar symptoms in my two other children. They too had problems over the years but were never clearly diagnosed as my youngest was as her symptoms were just so clear something was wrong and to what. Starting to piece together symptoms, diagnoses and family history I do not believe we are Celiac free. Something isn't right and I know it. Thing is my youngest DD is now gluten free and cannot be tested. But we are getting ready to test my middle DD now. #1 I think you have to follow your gut. Mothers know. #2 As some have mentioned you child has probably not been on enough wheat to cause any major damage. I know from our on again and off again cycle and my DD being so young that a biop. would show really nothing. Point is she could just be allergic which is what you wanted to know. Or it could be more. Yes her symptoms are very similar to Celiac.

Why not have you and DH tested too since your child is gluten-free?

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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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