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Gluten Challenge, Not Many Symptoms, Do We Scope?

gluten challege scope

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#1 lhollamon

 
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Posted 22 November 2013 - 10:49 AM

Hi there, I have been searching these forums for days and thought I would just post to hopefully get some help.

 

Our son went gluten free about 9 months ago due to chronic diarrhea. After about two months we had normal stool diapers for the first time in his life. He is starting preschool now and basically its getting harder for us to justify keeping him on this diet without knowing for sure, so we decided to do the scope. He is scheduled for middle of December which will be 6 weeks back on gluten. So here is our dilemma. We started the gluten slowly per the doctor and its not been bad, he did have one night of full body hives and rash, which is not normal for him, and if anything his stool is actually MORE formed. His eczema is bad, but we just moved and the prior owners had a cat which he is allergic to, so I don't know what is causing what. Oh and he has had a bad cold for three weeks which just today turned into a sinus infection, not sure if that is related either.  We did do genetic testing before going gluten free and he has one of the genes and also a sensitivity gene..HELP?? What were your kids reactions on the challenge? Does it take a while? Should we scope?


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#2 greenbeanie

 
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Posted 23 November 2013 - 04:37 AM

Poor little guy! It sounds like he must be pretty uncomfortable. If it's tolerable to stick it out until the scope date, though, I would keep it up if it were my child. As yucky as the challenge is now, it might be much worse if he had to do it again in the future (if an official diagnosis later became necessary for school or something). But if an official diagnosis doesn't really matter to you, then that's a different story.

My daughter was diagnosed with celiac by blood test and biopsy shortly after she turned four. She had never been totally gluten-free before testing, except for one long weekend, so she didn't have to do a regular challenge. But we normally only ate wheat a few times a week, so I had her eat bread every day for a month before her tests because I wanted to increase the chances of accurate results. That month was pretty bad, but I'm glad we did it and got a clear answer. Having an official diagnosis has made a huge difference for us in terms of getting her doctors to do other follow-up.

The rashes and whatnot are so hard because you can never be sure what causes them. My daughter used to get hives and random rashes on her cheeks quite frequently, plus horrible "diaper rashes" even after she was potty trained. After about three months gluten free, I realized that she hadn't had a rash in weeks. Now (six months after diagnosis) she only gets a mild itchy rash once in a great while. I'm pretty sure the rashes were mostly gluten-related, but it could be a coincidence because she also has pollen allergies that are usually worse in early summer. So who knows.

Good luck with whatever you decide to do! For what it's worth, the scope itself was very easy for my daughter. (The regular blood draws for the blood tests were much worse.) The nurses at our hospital were excellent, and she actually had fun at the hospital and didn't want to leave.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.






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