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happyfeet

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happyfeet Newbie

Hi I'm new to this site. My 5 year old son, Ryan, is in the process of being diagnosed with Celiac. He had a blood test 3 months ago, and we found out today when we saw the GI doctor that it was inconclusive. That 2 of the tests were not valid b/c he has some protien in his blood that is on the low side and can effect the test. However, the 3rd one showed high levels and needed to be looked into. He did another blood test today and if the numbers are still high, he is going to do an Endoscopy and find out for sure if he has it or not.

So, when I was googling info about this disease I found this website. I decided to join to find out some info, so if he does end up having it, I can be prepared. Hope to meet other moms who have kids with it. :)


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darkangel Rookie

Welcome! This is a great supportive and educational forum. Check out the parents' subforum, if you haven't already.

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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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