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Pat
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Post by Pat »

Ok, so I have been dianosed with MC (CC and LC) and the meds I have tried have not helped. Entocort, pepto, Cholestyramine. I have an appointment with a new GI doc in April so I am taking Immodium 3-4 X/day. It controls it, thankfully. My question is if I am gluten intolerant and this site seems to think gluten is a problem for MCers then why did I not have any damage to the villi from gluten over the last 7 years? I had a colonoscopy with biopsies 7 years ago and recently. Both said the same thing. I also had a small bowel biopsy with the most recent colonoscopy. Ya'll are good at figuring out these things so I thank you in advance.
Pat
P. S. Can I safely take immodium forever if the gluten is not causing any damage?
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tex
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Post by tex »

Hi Pat,

That's a relatively easy question to answer. You haven't accrued any "apparent" damage to the villi, because you're not a celiac, which is true of most of us here. That's why so many doctors have a problem understanding how anyone can be gluten sensitive, and yet not show any damage to the villi of the SI.

In fact, most doctors seem to refuse to believe it. Some researchers, (like Dr. Fine, for example), believe that villous atropy will eventually become a reality, if gluten sensitive patients continue to ingest gluten, but I'm not sure that has been demonstrated to be true in all cases, by means of a controlled research project, (though I'm convinced it may be true in many cases).

Here is what Dr. Fine says about this:
How do I know if gluten sensitivity has damaged my intestines?

If intestinal symptoms are present in the face of a positive antibody test to gliadin, it is likely that some damage is present. Although traditionally, doctors have relied on a biopsy of the upper small intestine to prove or disprove this, it is now known from medical research (including studies I have conducted) that the damage may be imperceptibly subtle, possibly to the extent of being invisible to the microscope. Thus, tests assessing the function of the intestine rather than how it looks under a microscope are playing a more important role in this field.
Also, he says this about "normal" appearing SI biopsies:
Can I have gluten sensitivity if small intestinal biopsies are normal or only minimally abnormal?

Although by definition a normal small bowel biopsy rules out celiac sprue, it does not rule out gluten sensitivity. Although asymptomatic people with gluten sensitivity may have normal or near-normal biopsies, so too may people with symptomatic gluten sensitivity. This has been reported in the medical literature (called "Gluten Sensitivity with minimal Enteropathy" or "Gluten-Sensitive Diarrhea without Celiac Disease". Furthermore, even though such people's intestine's appear normal under the microscope, up to one half already have nutrient malabsorption, a major contributor to osteoporosis and malnutrition, attesting to the fact that microscopic analysis of intestinal biopsies is an insensitive way of assessing function and immunologic food sensitivity. However, because there is still a virtually universal reliance on small bowel biopsies to diagnose gluten intolerance, most asymptomatic or symptomatic gluten sensitive people (based on screening tests) will not be diagnosed corectly or be instructed to follow a gluten-free diet even though symptoms may resolve completely.
Both quotes come from this page on his site:

http://www.finerhealth.com/Educational_ ... nsitivity/

I think that Immodium is generally considered to be a drug that is relatively free of significant long-term risks, so if you are satisfied with the results, it is probably relatively safe for long-term use.

Tex
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kate_ce1995
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Post by kate_ce1995 »

I think of it as there are people who can't tolerate lactose (from dairy) or certain sugars, or fruit, or other foods, but there aren't tests for those to say one way or the other. It's all about how you feel. It took me a lot of trial and error to truely believe that I have a gluten sensitivity. But the proof has been in how less bloated I am, how much less my muscles ache, how much less my joints hurt. I even get a mild headache if I eat gluten. For me all those feelings are worth the lifestyle change despite not testing positive for celiac disease (although I never had an endoscopy so I can't comment on the lack of villi damage, although I suspect like others here whho have bene through it, I'd have shown nothing out of the ordinary there either).

Katy
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