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Kids tested, how will I know


Deades

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Deades Contributor

Because I have celiac, my kids were tested today.  I never had the blood test, went straight to the endoscope.  Doctor was looking for something else and happened on a damaged small intestine.  I have no physical symptoms and neither do my kids (ages 21 and 19).  What am I looking for in the blood tests?  Our doctor had them run the full celiac blood panel.


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tessa25 Rising Star

You're looking for a high on any one blood test. which would lead to an endoscopy/biopsies being done by a gastroenterologist. Must be eating gluten until all testing is done. 12 weeks of eating gluten before blood tests.

cyclinglady Grand Master
4 hours ago, Deades said:

Because I have celiac, my kids were tested today.  I never had the blood test, went straight to the endoscope.  Doctor was looking for something else and happened on a damaged small intestine.  I have no physical symptoms and neither do my kids (ages 21 and 19).  What am I looking for in the blood tests?  Our doctor had them run the full celiac blood panel.

Since I presented with anemia, I had my doctor check my daughter for it when they ran her celiac panel.   My anemia made me very tired and out of breath.  Tessa is right, anything out of range is suspect.  Highs on the celiac antibodies tests (EMA, DGP, TTG).  A low on the control test (IgA deficiency/Immunoglobulin  can invalidate the IgA celiac antibodies tests.  

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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.
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