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Ziva

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pricklypear1971 Community Regular

I always thought I was a little weird :)

We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.

Private message skylark with a link to your results. Ask her to look at them.

So, your daughter was dx'ed by bloodwork/biopsy - and she probably has her Dad's genes in the mix (if they ever look).

Many ai diseases have a positive reaction to gluten-free, along with celiac disease. I don't think the particular Celiac test you were + on has reasons for false + (it's ver specific). but, keep googling about that test and you may find it. Or, you can be Celiac. The genes they look for are the most common in the west - not the world - and Celiac research in other populations are showing different gene involvements. Plus, the gene itself isn't the deciding factor since not all people with the genes have celiac disease - something activates them - and they don't know what it is or how to test for it.

Good news - gluten-free helps you. So by all means keep doing it. And if your hematologist dx'ed you celiac don't fight it (especially since the diet helps) unless other issues keep popping up. And then, it may be "in addition to" issues re: Celiac.


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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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