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Celiac Types And Segregations, And Eventualities


pricklypear1971

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pricklypear1971 Community Regular

Ok, I admit to taking time off from reading about celiac disease. I needed to.

But now I'm reading again, and I don't know if it's me looking at this with new eyes or if this is a newer phenomena, but it seems like lately I'm seeing articles and research drifting towards segregating out types of gluten intolerances??? Also, it seems I'm reading recent (I think) articles about how if you are + on the genes you are always at apparent lifestyle risk (meaning if you eat gluten you raise your risk) of developing celiac disease.

I found something about Gluten Ataxia not being celiac disease but a separate condition, apparently, although I've read here how people have neuro and gi issues from gluten...so what are THEY (I mean ME). This seems to be associated with DQ1. This is from About.com but this is an example of the type of article I'm talking about... Open Original Shared Link

Of course, there's all the new stuff about NCGS - which I'm very happy to see out there.

Then there's stuff from the company doing desensitization/vaccines saying DQ2 is the only celiac gene.... Open Original Shared Link

Saw something else saying they are going back and looking at genes from dx'ed Celiacs who did not know their genes and are finding a number of them aren't DQ2 or DQ8. https://www.celiac.com/articles/23019/1/The-Celiac-Disease-Confusion/Page1.html

Then there's the stuff about 13 new contributing genetic loci Open Original Shared Link

What else has everyone else been seeing, and what do you think?


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GFinDC Veteran

I think that's a lot of reading...:)

SleepyBunny Apprentice

I think if you feel better on a gluten free diet wether you have gastro or neuro symptoms they should just call it celiac. Not if you're just doing it for some diet fad. But if you have symptoms get better with a gluten-free diet and you have other conditions related to celiac (other autoimmune disorders, vitamin deficiencies, etc). They should call it all celiac but break it down into different categories like they do with other diseases. If you react to something and you keep ingesting it anyway it's going to cause some kind of damage eventually right? Just because it's not damage to the villi doesn't mean it shouldn't count. Sorry if I'm rambling it's one of those days lol :lol:

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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.
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      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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