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sariesue

Is It Time To Find A New Dr?

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Here's a little back story to my dr problems. Last year, while trying to dx the tingling in my fingers it was discovered that my b 12 levels were deficient. I had the endoscopy/biopsy done and was told the biopsy was negative and there was only one minor finding (gastritis). So my allergist tested me for food allergies to wheat, barley, rye. I reacted to the barley only and was told I am probably just intolerant of wheat. I went gluten-free for about 2 months and felt soo much better. But, since I don't actually have any dx gave up and went back to eating everything. My symptoms after eating gluten came back in full force and have been getting worse ever since. On saturday I overdid it again and was so sick Sunday that I could not go to work. Needing a dr's note I went back to the dr and explained the events since I'd last seen him. When I mentioned that my problems seemed to be gluten related he retored that he tested me for gluten intolerance and I was negative so it couldn't be the problem. He ordered a new b 12 and some parasite test and sent me home. From my point of view its very obvious I have some problem with at least wheat. Second there is a difference between celiac and a food intolerance. That was on Monday and I'm still livid. I'm starting to wonder if I need a new dr.

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You are correct that you were tested for celiac disease and NOT gluten intolerance, since there really is no test for that at this time except avoidance of gluten and seeing if that works. There is genetic testing which can be done through Enterolab to see if you carry a predisposing gene for gluten intolerance but it is not diagnostic, merely suggestive. Have you had a celiac blood panel drawn to test for celiac? This is sometimes positive even when the biopsy is negative. Now while the biopsy is usually done to confirm the blood results, the blood testing appears to be pick up the antibodies before much damage has occurred in the small intestine. So that could be one way of approaching it.

The other way is that you obviously feel better when not eating gluten. Do you really need that piece of paper to tell you that eating gluten is bad for you? I know some people do, just to convince themselves that they really have something wrong, but many of us here are self diagnosed and feel no need for the piece of paper with celiac disease written on it. If you need the piece of paper I think you need a different doctor and start over again, with the blood testing first. This could be negative too - there is a 20% false negative rate - and if this is the case you will have to decide whether you wish to continue risking serious damage by continuing to eat gluten in the face of evidence that you do not tolerate it well.

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You are correct that you were tested for celiac disease and NOT gluten intolerance, since there really is no test for that at this time except avoidance of gluten and seeing if that works. There is genetic testing which can be done through Enterolab to see if you carry a predisposing gene for gluten intolerance but it is not diagnostic, merely suggestive. Have you had a celiac blood panel drawn to test for celiac? This is sometimes positive even when the biopsy is negative. Now while the biopsy is usually done to confirm the blood results, the blood testing appears to be pick up the antibodies before much damage has occurred in the small intestine. So that could be one way of approaching it.

The other way is that you obviously feel better when not eating gluten. Do you really need that piece of paper to tell you that eating gluten is bad for you? I know some people do, just to convince themselves that they really have something wrong, but many of us here are self diagnosed and feel no need for the piece of paper with celiac disease written on it. If you need the piece of paper I think you need a different doctor and start over again, with the blood testing first. This could be negative too - there is a 20% false negative rate - and if this is the case you will have to decide whether you wish to continue risking serious damage by continuing to eat gluten in the face of evidence that you do not tolerate it well.

Yes, I do want an actual diagnosis on paper. I have several other chronic health conditions including a mental illness so my parents and some close family discredit how I feel/react to things and claim "it's all in my head" If it's on paper they have to accept it. And part of me really doesn't want it to be true.

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I would get a different Dr. Do you need a referral to go to a GI specialist? If not, find one and make an appointment. Insist on a scope with biopsy.

My blood test came back negative for Celiac, but the scope showed obvious damage. In my case if the Dr had stopped after the blood test I wouldn't have been Dxed correctly. Celiac doesn't always show up in blood tests, nor does intollerance to gluten. Good luck!

Wishing you better days...

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I would get a different Dr. Do you need a referral to go to a GI specialist? If not, find one and make an appointment. Insist on a scope with biopsy.

My blood test came back negative for Celiac, but the scope showed obvious damage. In my case if the Dr had stopped after the blood test I wouldn't have been Dxed correctly. Celiac doesn't always show up in blood tests, nor does intollerance to gluten. Good luck!

Wishing you better days...

This, exactly. You can have negative blood results and still have Celiac. You can have a negative biopsy and still have Celiac. Do you know which tests the doc used? There is a newer test, DGP that is more sensitive than the older gliadin ABS.

You need a new doc and new tests. The bad news....you need to keep eating gluten if you want an accurate dx. The new tests may be falsely negative if you are not eating enough gluten.

Good luck!

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sounds like u need a new doctor. if u feel better being gluten-free i would stick to it regardless of what any limited test may say because i think ur experiences speak volumes of what ur body wants. best wishes!

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You already have a diagnosis from the allergist, you react to the wheat family of grains.

Why don't you want it to be "true?" You actually hold the power to make yourself feel better, unlike some of these other diseases, where the only alternative is treatment with medication which causes bad side effects. You have shown to yourself that you feel better off of gluten, and feel worse on it. This is not going to change, whether or not you go to a new doctor, who will tell you either that they don't believe in gluten intolerance with a negative biopsy, (ignoring the latest research) or that you must then continue eating gluten for weeks and get retested - but you're likely to retest negative, again. Yet, you can still be gluten intolerant without those tests showing it. This is an ongoing problem in the medical industry.

You can get a genetic test over the counter and see if you are a carrier for the gluten intolerance or celiac genes.

You can get retested for allergies.

You can make peace with concept of being able to make yourself healthier, if you just eat and make it what you need to eat, and ignore the family members who just don't "get it."

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