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Please Help... Diagnostic Question...need More Information
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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!!! :)

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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

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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

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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.

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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

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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.

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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.

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    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
    • Try to stick to a whole foods diet.  Things like unseasoned stew, soup, etc.  Things easy-to digest, preferably not processed by a anyone except you.  Too often new celiacs start using gluten-free foods (cookies, bread, crackers).  Your body is not used to these grains and they often contain lots of junk.  For example, I react to Xantham gum.  It does not bother my gluten-free hubby, but it gets me every single time!   Did you read our Newbie 101 thread under "Coping"?   It contains lots of valuable tips.  Make sure those meds are gluten free.  Supplements too.   I hope you feel better soon!    
    • Here are the actual tests.   http://www.cureceliacdisease.org/screening/ Insist on the complete panel.  Let them know (your doctor) that your father had celiac disease.   Document in writing!  If you have celiac disease, your life can be improved.  All the things I attributed to aging were actually related to celiac disease.  It is never too late to feel well!  I am in my 50's but my Aunt iis 81.  We celebrate a Gluten free Thanksgiving every year!   Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free!  There are silent celiacs.  My symptom?  Anemia.  No tummy issues.   Please advocate for your health.  Keep all records.  Doctors can not ignore written facts and requests.    
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