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Is The Autoimmunity Always There, Even Once Gluten Free?


alicewa

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alicewa Contributor

The questions may sound confusing. But what I'm trying to find out is if I'm still having damage to my gut, even though I'm strictly on a gluten free diet. My doctor told me that over 50% of celiacs don't make a full recovery, even when on a strict gluten free diet, which is the reason for the vaccine.

Sometimes I wonder if the immune system may 'more mildly' continue to attack the lining of the small bowel or cause inflammation and elevated antibody levels and they just increase by a lot once gluten is introduced.


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psawyer Proficient

The number of people with celiac disease who do not recover 100% is partly a result of the ignorance of the medical community about the disease. The longer you go undiagnosed, the more damage that is done.

I have been gluten-free for more than eleven years, but I will never recover 100%. Years of malabsorption damaged my bones, and while my osteoporosis is not getting worse, it will never go away.

My intestines are fully healed, and my health is good. But I know that I can never, ever eat gluten again.

Skylark Collaborator

I think part of the problem is that it's too hard to eat truly gluten-free unless you avoid all processed foods and never eat out. The stuff is everywhere. There's decent evidence that some celiacs are casein-sensitive too, and I wonder about casein triggering low levels of autoimmunity.

Reba32 Rookie

what vaccine? :unsure:

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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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