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What Do You Think?

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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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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 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 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.



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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.



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    • Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this. Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse @GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same.  I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own. Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...
    • Ifyour using local  agricultural products  check into and your state dept  of ag.  You can  also check to see the types of projects that are available.  GOOD LUCK  
    • Q: My friends are talking about gluten-free diets and gluten-free foods. ... In celiac disease, the immune system identifies gluten as a foreign invader ... View the full article
    • Yes, GFinDC you've got the gyst of what I am after. If I am reading your response correctly then, you think that inflammation in the gut caused by gluten ingestion is enough to trigger diarrhea, quite apart from the state of one's mucosa? That would be good news for me. More information on this inflammation reaction in the gut with gluten ingestion is precisely what I am after, but cannot seem to find. Because, as stated, as far as I know, D is mostly if not only, caused by flattened villi. OTOH, how interesting to hear from you, cycling lady, that you had flattened villi and no D! RMI, the link is quite depressing. Many appear not to have healed mucosas after a gluten-free diet. A repeat endoscopy is what is so clearly needed by many of us, but honestly I am a little wary of the risks.
    • No, they didn't test my ttg igg, which I was surprised about considering the low IgA and positive DGP Igg. (The tests they did were IgA serum, Ttg IgA, DGP Igg and IgA and gene testing) If he ever returns my call, I was going to ask him about that.  He initially wanted to set up a endoscopy, but I told him I had one last year (with my prior GI) and he said he'd take a look at it and we'd go from there, except that was two weeks ago and I haven't heard from him.  My prior GI did take biopsies, I believe to rule out H.Pylori and I was told biopsy results were normal, however, I didn't receive a pathology report or anything like that.
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