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Celiac AND IBS


Pegleg84

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cyclinglady Grand Master
2 hours ago, plumbago said:

Is zonulin triggered by milk? I thought it was mainly gliadin.

They do not known exactly  what causes a person to have to much Zonulin (gluten is one suspect).  Celiacs seem to have too much of it.  But since some 1/3 of adults never heal from celiac disease (Open Original Shared Link), we may also never reduce the amounts of zonulin.   That could explain continued intolerances despite being gluten free.  They think it could be one of  the causes for many autoimmune disorders and food intolerances.  

Open Original Shared Link

this interview might be easier to understand:

Open Original Shared Link

p.s.  Recently they found that 20% of kids do not heal when they thought they did:

Open Original Shared Link

but....for those worrying, you can feel better.  Working towards complete dietary adherance and stricter laws may be required.  I know that personally, I have never intentionally eaten gluten.  I have never known the source of my  glutenings.    So, I think we need stricter laws and more education.

 

 


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icelandgirl Proficient
3 minutes ago, cyclinglady said:

They do not known exactly  what causes a person to have to much Zonulin (gluten is one suspect).  Celiacs seem to have too much of it.  But since some 2/3  of adults never heal from celiac disease, we may also never reduce the amounts of zonulin.   That could explain continued intolerances despite being gluten free.  They think it could be one of  the causes for many autoimmune disorders and food intolerances.  

Open Original Shared Link

this interview might be easier to understand:

Open Original Shared Link

 

 

Cyclinglady...is that true?  2/3 of adults never heal from celiac?  I hadn't heard that, but find it scary!

cyclinglady Grand Master
38 minutes ago, icelandgirl said:

Cyclinglady...is that true?  2/3 of adults never heal from celiac?  I hadn't heard that, but find it scary!

Sorry, that is 1/3.  But symptoms are reduced or eliminated even if there is still intestinal damage.  The sad news is that they used to think kids always healed but 20% do not per research released this past month.   See my modified post for supporting links.  

Pegleg84 Collaborator

No lactose or cassein for me. I've gotten to the point that I can handle a teeny bit of cheese every so often, or at least am willing to have a cheese hangover.

I think it's definitely possible that damage from gluten (even getting glutened once or twice a year can indeed have long-lasting consequesnces) is causing IBS symptoms, but the jury's out on that. For now I'm treating it like I have both, and being a: super duper extra careful about possible gluten exposure, b: staying away from my know intolerances, dairy and soy, c: trying to identify other problem foods and things that might trigger IBS symptoms (foods, stress, etc).

I've actually been feeling pretty good in the gut department lately, so that's nice, though it doesn't help me solve the mystery.

Oh, any recommendations for good probiotics that won't break the bank?

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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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