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

Please Help... Diagnostic Question...need More Information
0

7 posts in this topic

Hi, Ok. So one month ago I was diagnosed Celiac after having severe pain in my abdomen for the last month and many other symptoms. They did an endoscopy and a biopsy and the biopsy came back positive for Celiac. So I was told to go Gluten Free and the last month I have slowly felt better. I assumed I was properly diagnosed and started my life changing diet.  2 weeks ago they had me go in for blood work and both my serology test and genetic test came back negative for Celiac. The nurse who called me about me results said I don't have any aversion to gluten. She was not a kind lady and was very angry at me for asking her so many questions she could not answer. She had to talk to the Dr. 3 different times and call me back. I knew the serology test was done incorrectly and told her so. I feel like my Dr. just gave me a giant run around and don't even want to go back and see him... 

 

So how do I have a positive biopsy and negative genetic test? I know the serology was done incorrectly, as I had been gluten-free for over 3 weeks prior to the blood work... but if the genetic test came back negaitve... is it not possible that I could be Celiac?

 

Do either of those tests actual test for gluten sensitivity? Or just for Celiac?

 

Please any advise or any experiences you have could really help me at this point... Thank you so much!!! :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Assuming they actually ran the correct gene test, then they should be looking for other reasons you have intestinal damage. Have you actually seen the actual test results and pathology reports? Might be a good idea to get a copy of that and ask them to explain the damage they saw.

http://www.cureceliacdisease.org/archives/faq/how-does-a-genetic-test-rule-out-celiac-disease

Other causes of villous atrophy:

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

0

Share this post


Link to post
Share on other sites

only 92% have DQ2.5 and DQ8, which are the official celiac genes.

 

Th rest have other genes, or half.

 

Call the lab to get the full results. 

 

Several people here have gotten the full results.

 

---

Here is a paper on why DQ9 is a celiac gene, and DQ2,2 and DQ7, and DQ2,3

The labs will report those are not celiac genes.....

https://www.duo.uio.no/handle/10852/28050 bottom of page, a pdf

1

Share this post


Link to post
Share on other sites

Also, it looks like the blood test for tissue transglutaminase IgA was negative.

 

Now you might be IgA deficient, or your body cannot make much IgA because the immune system does not work well. This is also typical  with small children.

1

Share this post


Link to post
Share on other sites

If you are gluten-free, that will cause false negative blood tests (excluding the genetic tests).  Some people's labs go back to normal within a few weeks - you might be one of the lucky ones.

 

Maybe even post the biopsy results here. There are a few people who could probably help you with interpretting the results.

 

Best wishes

0

Share this post


Link to post
Share on other sites




I would get a copy of the exact tests they ran along with the results and lab ranges.  Also, I would find another doctor.  They should have run these tests first, before your scope, while you were eating gluten.  A good doctor would have known that :D.

0

Share this post


Link to post
Share on other sites

a knowledgeable doctor would not have run blood tests on a person who has been gluten free for three weeks.  None of those test results are valid.

 

You had a positive biopsy and a positive response to the diet.  You have celiac disease.

 

The genetic test is NOT diagnostic.  Some people with the common genes do not develop celiac disease . . . some people without the genes do get it.  This test is really of little value to doctors unless it is used as merely a "clue" when other test results are vague.  

 

DO NOT resume eating gluten.  DO get a new doctor if at all possible.  See if there is a Celiac Support group in your area.  Get advice from them about what doctors are in your area.

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
      104,115
    • Total Posts
      919,447
  • Topics

  • Posts

    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
    • I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them.      I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.   I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.    My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks?  I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own. Any advice or information would be so appreciated! 
    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • Finally, proof that non-celiac gluten sensitivity is real. ... for the 30 percent of consumers who choose to buy gluten-free products and the 41 percent of ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,154
    • Most Online
      1,763

    Newest Member
    calla84
    Joined