Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Inconclusive Test Results?
0

3 posts in this topic

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:

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,132
    • Total Posts
      919,525
  • Topics

  • Posts

    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,167
    • Most Online
      1,763

    Newest Member
    georgemathews
    Joined