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Confused On Results


Liviesmom

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Liviesmom Newbie

Hello - this is my first venture to this site. My 3 yo daughter got her celiacs results and we can't get to the GI for 2 mos. As mentioned, her total IgA was 59 (range for age group 41-395). But, alleles were detected in the genetic test, giving her a higher risk for celiacs. She has chronic diahera (or just mush, I guess). I know the GI will want to scope her, but in the meantime, should I start going gluten free?? She has some symptoms, but isn't testing positive, except for having the gene. The lab report says no serological markers were detected, but that this test does not rule out a diagnosis of celiacs. Any words of advice would be great.

Thanks,

Karen


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aikiducky Apprentice

If you want a positive biopsy, which will give you an official diagnosis, you need to keep her on gluten until the biopsy is done.

Pauliina

happygirl Collaborator
Hello - this is my first venture to this site. My 3 yo daughter got her celiacs results and we can't get to the GI for 2 mos. As mentioned, her total IgA was 59 (range for age group 41-395). But, alleles were detected in the genetic test, giving her a higher risk for celiacs. She has chronic diahera (or just mush, I guess). I know the GI will want to scope her, but in the meantime, should I start going gluten free?? She has some symptoms, but isn't testing positive, except for having the gene. The lab report says no serological markers were detected, but that this test does not rule out a diagnosis of celiacs. Any words of advice would be great.

Thanks,

Karen

Hi Karen! Welcome to the board.

A total IgA doesn't diagnose Celiac, but tells if she has an IgA deficiency (which can affect the accuracy of the other Celiac blood tests).

Did she have the other blood tests run: Open Original Shared Link

Do NOT go gluten free until the testing that you choose to have is completed. The testing measures the damage done by gluten and the antibodies your body produces. If you stop eating gluten, and are a Celiac, your body begins to heal and you will test negative. That is the last thing you want---a false negative!

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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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