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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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