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Doc Tomorrow - Which Tests To Request?
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29 posts in this topic

Chirpy, sometimes people use the terms gluten intolerance and celiac disease interchangeably. While celiac is a disease caused by gluten intolelrance, there are very specific tests and requirements in order to be diagnosed specifically with celiac disease. These include a positive blood test, and visual damage to the small intestine, sometimes to the naked eye through the endoscope and sometimes only by microscopic examination of the biopsy samples. If you have neither of these findings (and most doctors won't do the endoscopy if you have negative blood work, then by definition you do not have what is called celiac disease. That is why they have the ranges on the blood tests; many people will have some antibodies, but you have to reach more than 10 (or 20) in the sample ranges you gave to be labelled celiac.

So that is where the gluten intolerance comes in. If you have all the same symptoms as those who have celiac disease, but do not test positive for it, then you most probably have non-celiac gluten intolerance, which is just is real and causes the same kinds of problems as celiac disease and needs to be also treated with a gluten free diet. It is just that it is always a much neater package if you can tie it up with string and say, yep, this is celiac disease, rather than the somewhat fuzzy gluten intolerance. And many doctors do not acknowledge gluten intolerance as a condition. They are the less well informed :P

I hope this clarifies it a little for you. Keep asking questions about what you don't understand.

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Thanks for the additional info, Mushroom.

I just wish I could feel more certain about it. With my lactose intolerance problem, it can't be measured with a test.

I'm going to have to really think this all over carefully and keep reading.

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Thanks for the additional info, Mushroom.

I just wish I could feel more certain about it. With my lactose intolerance problem, it can't be measured with a test.

I'm going to have to really think this all over carefully and keep reading.

Well, the lactose intolerance, if it is reasonably recent (i.e., not lifetime) is a sign that your villi in the small intestine have been damaged because the enzyme that digests lactose is produced at the tips of the villi which are the parts that are damaged first. I was lactose intolerant for years before I recognized I was gluten intolerant. And no, I never bothered with any testing because I was not going to eat gluten anyway. You are sounding like the doctors :lol: - if it can't be measured with one of their tests it doesn't exist - NOT!! Gluten intolerance is very real and most of us find we are able to live within that gray area of knowing something that we can't prove.

One thing you could do would be to order the Enteriab stool/saliva testing online. This will measure IGA, casein and soy intolerances, give you a fecal fat score as a measure of how well your digestive system is working, and test for genetic markers for celiac and gluten intolerance. It will not, however, tell you whether or not you have either :(

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Ugh. Your doctor story is so familiar. I finally found a good osteopath who listens to me and doesn't do stupid stuff.

The tests are good news. It means you do not have celiac issues with your intestine that are severe enough for the antibodies to make it to your blood.

You mentioned giving the gluten free diet a try. I'd still encourage you to do so, especially with an itchy rash that looks like dermatitis herpetiformis. If the rash goes away in a few weeks, you have your answer and you will be SO much more comfortable. The canker sores will also go away if they're caused by gluten. I can bite the inside of my mouth now and I don't get a canker sore there. It's like magic. If I get glutened, they come right back.

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