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Son In Process Of Begin Diagnosed..


TerriB

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TerriB Newbie

I'm sitting here wanting to cry for my child. One of the tests for Gluten intolerance came back slightly positive. The pediatrician wants us to see the GI doctor. I already had it scheduled for beginning of June. I checked with the GI office and they said not to change his diet. So I'm not but he is in so much pain. He has always had pain I just didn't know how to treat it. We've tried antacids previcid and others as well as probiotics. I'm going to do the probiotics again cause that helped some. He's starting to realize that that really is the problem too. A cookie hurt him for hours. 1/2 a cinnamon roll was horrible. I'm feeling like such a bad parent for giving him something I know will hurt him. No one should have to feel like this. I hope the biopsy is scheduled quickly. I can't do this too him for much longer.


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sb2178 Enthusiast

I'm sitting here wanting to cry for my child. One of the tests for Gluten intolerance came back slightly positive. The pediatrician wants us to see the GI doctor. I already had it scheduled for beginning of June. I checked with the GI office and they said not to change his diet. So I'm not but he is in so much pain. He has always had pain I just didn't know how to treat it. We've tried antacids previcid and others as well as probiotics. I'm going to do the probiotics again cause that helped some. He's starting to realize that that really is the problem too. A cookie hurt him for hours. 1/2 a cinnamon roll was horrible. I'm feeling like such a bad parent for giving him something I know will hurt him. No one should have to feel like this. I hope the biopsy is scheduled quickly. I can't do this too him for much longer.

Maybe add in digestive enzymes if he's old enough to swallow them? They cut down on my pain while I was still eating gluten. But, possibly just because it helped with lactose issues.

mommida Enthusiast

The only thing you can do is try and get the appointment moved up. (Which is very hard working with a specialist that can take 3 months to get an appointment with.)

The patient has to keep eating gluten to be tested for Celiac, EE or other eosinophilic gastro issues. The endoscopy WITH BIOPSY can be used to rule out a few different disorders that have nothing to do with gluten, but present with the same symptoms. Your pediatric gastro should discuss this with you further.

Hang in there! This is one of the hardest positions to be in. Been there before. ;)

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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.
    • Scott Adams
      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.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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