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nightowl1988WA

Do I Have Celiac Disease?

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A year ago in April, I had a blood test that came back positive for Celiac disease. The doctors told me to start a gluten free diet immediately and three weeks later I had the scope test that came back negative but found two infections including H pylori. I have continued the gluten free/ dairy free diet because wheat/gluten cause me pain when I eat even a small amount of gluten. Do I have Celiac disease?

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Hi nightowl, and welcome to the forum. And welcome to the no-man's land that a lot of us live in.

First of all, there are many false negatives on the blood testing and positive on the scope. You had the reverse - your blood showed the antibodies but your scope results showed negative. Well, there are many false negatives on the scope test too. A lot of it depends on the skill of the person doing the endoscopy, how many samples he takes, whether he takes them in the right places. With over 30 feet of small intestine, and villous damage that is often patchy, it is easy to miss damaged areas.

Now they did find H. pylori - I assume you are being treated for that, right?

The simple and probably most relevant answer to your question about eating gluten is, if it bothers you, don't eat it. You obviously have an intolerance to it if you have antibodies to it sufficient to show positive on the blood test, and as I mentioned, they may have missed the damage in your small intestine. But the big question is, "Does it matter?" Well, this is a question each person has to answer for themselves. I personally was never tested for anything, but I know that I cannot eat gluten, and I "know" every time I accidentally consume some gluten. So it matters not to me whether it is celiac disease, gluten intolerance, gluten sensitivity, whatever you want to call it. A big deal is made about celiac disease, but the intolerance/sensitivity can be just as disabling and cause symptoms just as bad as celiac. More and more research is showing that perhaps gluten intolerance is early celiac, or that it is just a different manifestation of celiac (currently celiac disease is defined as being villous atrophy in the small intestine, or dermatitis herpetiformis, the skin manifestation of celiac disease. What if there are multiple manifestations and they are all celiac disease? Medical science has not yet been able to answer this question.

We do know that there are many autoimmune diseases associated with celiac disease and some of them can be associated with gluten intolerance also. So, for me at least, it is rather splitting hairs, or how many angels can dance on the head of a pin, before a decision is made that it is celiac disease. I do not consider the question particularly relevant, because the treatment is the same whichever you have. Continue on your gluten free diet and see if you feel better. If you do have damage to your villi you will have difficulty digesting lactose because the enzyme for that is made on the tips of the villi which are damaged by gluten. One test you can give yourself is to try drinking some milk- if you have problems with that then you probably have damaged villi. Test this out by eating some hard cheese - if you have problems with that too, then you probably have problems with all dairy.

I hope this has been of some help.

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