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Inconclusive Test Results?
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I just talked to my GI's office about my biopsy results and it came back inconclusive. Has anyone ever had this happen? I wish it would have been just positive or negative. I don't understand what it could be. The person I spoke with (not my doctor) didn't seem to be able to answer my questions and now it's too late to call them back. I have to wait until Monday when I pick up my path reports. She mentioned something about inflammation due to acid reflux???? My head was spinning when she said inconclusive that I couldn't think straight enough to ask the right questions. I could kick myself. I just want this over with. Has this happened to anyone else?? I wasn't gluten-free before the test, in fact I thought he was checking for inflammation due to Crohn's. I was taking prednisone for a few months but had tappered off about 2 months prior to my EGD. I'm also taking immune suppressants as well. Any ideas would be great.

Thanks!!

Lisa :unsure:

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Yes, I had the same thing happen to me. My blood test showed signs of celiac disease, but the biopsy was "inconclusive". The doctor said that there was "nonspecific inflamation" but not the typical damaged villi ( I think that's spelled right). He still believed it was there though. He said that the damage could be "spotty" so maybe he just missed biopsying the right spots. Also, apparantly it depends on the experience of the technitian reading the biopsy. My doctor recommended that I try going gluten free and see if it helps. I've only just started about two weeks ago but I can't believe how much better I feel. I went to the doctor because of "attacks" of diarrhea and abdominal cramps I've had for about 25 years (I'm alittle slow on the uptake, I know). It sounds really stupid but I didn't even realize how sick I felt every time I ate, because I've always been like that. I just thought that everybody felt sick after they ate, until I wasn't anymore. Silly, huh? Anyway, I hope you find good answers to your questions. Apparantly, we're not alone!

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Who doesn't have problems with thr doctors not knowing what they are doing!

As many of you probably experienced, you go through quite a few doctors before

they can figure anything out. One doctor I have been going to for 15 years had never even heard of celiac disease before and asked if I could fax him all the information I had at home to him!!! I did it right away so no other patient of his would have to go through the ignorance of another doctor.

I was actually diagnosed about a year and a half ago, recently took another test,

to find out if my gluten level has decreased and the office actually misplaced the test for a whole week. I consider this normal, kinda sad :( don't ya think.

Anyway, my level went down, but not as much as I had hoped. I am even more diligent about my diet and have learned greater things on this site than anywhere else.

You have to remain positive and think about you while sorting out the diet, the change in lifestyle, i.e. going out, to tell or not to tell, getting over the depression, etc. In the end, the payoff is how much greater you will feel after you make the changes and get on with your life.

It is also fun to know how much more you know than the doctors and they wasted thousands of dollars and years of their lives and didn't learn about something so common in Europe that all newborns are tested for celiac disease.

Good Luck!!!

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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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