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Wow, I Am So Glad That I Found This Site


Carl's mom

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Carl's mom Newbie

Although my son (age 9) has not formally been diagnosed as a Celiac, we strongly suspect that this is the case. For most of his life, he's had daily D. We didn't think much of it because as an infant he had a bowel intussesception (where the small intestine gets stuck in the large intestine), which required emergency surgery. Because of where the incision was located, they also took out his appendix. When we asked about the D, the doctors always told us it was likely related to the lack of appendix.

Fast forward a few years, he had chronic sinus infections (6 in four years), constant coughing, fatigue, bloated stomach, and still the D. Allergy testing revealed nothing notable. So rather than continue to give him antibiotic after antibiotic and steriod inhalers, I finally took him to a Nutritionist/Naturopath about a year ago. In addition to some probiotics and other suppliments, she put him on a wheat free and dairy free diet. Things got better, but not much until we took him off all gluten. (he also seem sensitive to all corn products, in addition to gluten and dairy).

He's gotten much better, but still suffers from some congestion and D, particularly when he cheats. He struggles ALOT with having to eat differently from the other kids, particularly in school when they have parties. I will send in treats just for him, but he will on occasion "forget" that he has his own.

A year ago, I knew nothing about Celiacs. I found this site while searching for gluten free cookie recepies for Christmas (and thank you for the flour combination suggestions, the gluten-free cookies I made were yummy!!!).

Now I think we should have Carl tested, but I don't think we can since he has been gluten-free (well, almost gluten-free) for over a year. What to do?


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blueeyedmanda Community Regular

Welcome to the site.

I know a lot of members on here have used dietary response as their "test" Some people test negative and feel better avoiding gluten.

I hope this helps.

Feel free to ask any questions you might have.

loraleena Contributor

You could get a stool test through Enterolabs. Accurate even if off gluten for a year. Just the fact that he is doing so much better though is all you need to know.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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