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Confusing Test Results


Suffering in Ohio

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Suffering in Ohio Newbie
:angry: I have been suffering with abdominal pain for three years so far. I was told about a year ago that it was IBS. Nothing I took helped so I sought out a GI doctor. He has ran many tests but doesn't spend much time explaining things. I was but on Nexium for ahwile as they believed I had acid reflux. That didn't help. I started researching on my own. I believe whole heartedly that I have celiac but my blood tests came back negative. My symptoms are: extreme sensitivity to some foods causing stomach to be bloated, terrible gas, loose stools and frequent, fatigue, low iron, malnurished (result of a biopsy of intestines), achey joints, and burning sensation throughout stomach. The endoscopy revealed my intestines aren't absorbing nutrients and I have a very low iron count but my doctor doesn't seem concerned. Nothing was irregular with my colonoscopy. Any ideas? Should I totally rule out celiac?
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gfpaperdoll Rookie

It sounds like you have a positive diagnosis via endoscopy. Sometimes the docs do not bother to tell you that. but if you have malabsoption proved via endscopy that = gold standard diagnosis celiac according to the doctors at this time. I will not go into the falsehood of that theory but we all agree that if you do have a positive biobsy that you do have celiac, just that it is a shame to wait until you are so damaged to get a diagnosis.

If I were you I would get the biopsy reports in writing and if possible get another doctor to check them. But from what I am reading that you are saying sounds like you have celiac but that they did not put a name on it. Not unusual, believe me, it happens to a lot of people. When you get the records you might see an actual written diagnosis that you were not told about.

welcome to the board. It seems a lot of the regulars are out for a summer break. I am just on here escaping the summer heat under the AC :)

I also like the testing thru Enterolab.com you can look up their website. If you are interested in going that route.

Read these boards & check out some books to get the full picture.

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    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
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