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

celiac endoscopy blood test genetic test

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6 replies to this topic

#1 Dagyngrl

 
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Posted 29 August 2014 - 05:35 AM

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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#2 kareng

 
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Posted 29 August 2014 - 06:08 AM

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.curecelia...-celiac-disease

Other causes of villous atrophy:


http://www.curecelia...-celiac-disease
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#3 nora_n

 
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Posted 30 August 2014 - 06:05 AM

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....dle/10852/28050 bottom of page, a pdf


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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#4 nora_n

 
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Posted 30 August 2014 - 06:20 AM

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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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#5 nvsmom

 
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Posted 31 August 2014 - 05:51 PM

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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#6 SMRI

 
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Posted 01 September 2014 - 03:56 AM

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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#7 Cara in Boston

 
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Posted 01 September 2014 - 10:07 AM

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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