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I have been suffereing with strange symtoms for three years. It wasn't until my doc sent me for a celiac screen (blood test) that I suspected or even heard of it. I went off of gluten after the test. I felt soooo much better. The test came back negative and she told me that it was a very accurate test, I don't think this is my imagination. If I eat gluten I feel very dizzy, lose the feeling in my extremities and get horrible pain through my chest that spreads, like heart attack pain, I feel very tired and almost insane. I don't recognize myself. I asked her if I could be sensitive and not celiac, she really didn't know what to say other than stay away from gluten. Could the test be wrong? Or should I accept this answer? I know the bottom line is that I feel better no matter what anyone says. I was just wondering what you guys would think of this result? Thanks for a great place to chat!! :D

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Hi mysterypain! Welcome to the board! To answer your question, all doctors think the bloodwork is a very accurate test but it's not! Yes you can have negative blood-work and biopsy and still have Celiac Disease! The fact that you felt better after going gluten-free is a very good sign that you have celiac disease, not to mention the symptoms you experienced when you ate gluten.

If you need a docs diagnosis I would suggest using Enterolab stool panel test and it's accurate!

I hope this helps! :D

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Yeah...

I'm going through the same thing right now. I have all the symptoms...bloating, diarrhea, upset stomach, floating stools, hair falling out...everything except being underweight. Except the Gliadin IgG, which was a weak positive, all the lab tests have come back negative.

However, after reading some information on the www.enterolab.com site, it appears as though the EMA test is very specific but not very sensitive. This means that if it is positive, there is no possible way it is a false-positive...you have Celiac. However, it being negative doesn't mean much.

It being negative only means that the villi in the small intestine have not yet totally atrophied. This is because it is a blood test, and for the antibodies to get from your small intestine to the blood there must be some major, major damage. Only 30% of the people with partial villi-atrophy tested positive on the EMA / transglutamine tests even though there was, indeed, some damage to the villi.

I may be spelling some of these words wrong (sorry about that), but if you go the thread I started today (I'm Simply), gf4life has posted some links that give more details.

You ought to check them out.

Simply

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Hi!

I am new here too. I feel like I am going through the exact same thing! I just got my test results and they were "normal". I'm not sure which my doctor ordered but she sent me the results so I'll know soon.

Good luck! Hopefully we'll both find some answers.

Chris

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    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
    • Hi Beachgrl, We have had members with microscopic colitis before, usually in addition to celiac disease.  Have you been tested for celiac disease?  The reason I ask is, it is much better to be tested for celiac before starting the gluten-free diet.  The primary tests for celiac are to detect antibodies to gliaden in the bloodstream.  Those antibodies start to decline when a person stops eating gluten, so the tests become useless. There is no reason a person can't have more than one digestive system disease.  So it is smart to be tested for celiac disease if you can get the testing arranged.  Any change in symptoms after stopping gluten is an indicator that gluten is causing a reaction of some kind.  It could be celiac, or it could be non-celiac gluten intolerance, (NCGI).  There aren't any reliable tests for NCGI yet. Welcome to the forum!
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