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Not Sure If Celiac

scdurs

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scdurs Newbie
scdurs
Posted

I was experiencing stomach pains and gasiness and was referred to a gastroenterologist.  She performed a colonoscopy (I am 50) and an endoscopy. I had a positive biopsy leading to my celiac diagnosis. At the time, May of 2013, they said that was the gold standard for testing, so I accepted it as fact.  Still had pain issues, but less gas and I was no longer anemic.  My blood work for tissue transglutaminase ab (iga) was 8 after being gluten free for a few months. The lab report said anything less than 20 is negative, although others in this forum seem to indicate it should be less than 4. Also had abdominal ultrasound done and they found nothing wrong.

 

Problem is I don't feel any different (stomach pains) even though it is better than it was. My gastro doctor said a celiac may not feel any different, or may not realize they have consumed gluten at all, unlike a gluten intolerant person. I have been gluten free since May of 2013, but have made a couple of mistakes and consumed food that my contain gluten, drank a beer without thinking, and I never felt anything. Have not noticed much improvement other than the reduction in gas, and improvement in blood count.

 

I'm beginning to think I need to do the genetic testing to rule out any doubt. What do you think?

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi and Welcome to the Forum!

 

I've never heard of a positive biopsy turning out to be anything other than Celiac - but if I'm wrong about this I'm sure someone will be quick to jump in and correct me.  If you aren't 100% gluten-free (i.e. avoiding cross-contamination, etc.) then you can't expect all of your symptoms to go away.  Not sure why you wouldn't have a noticeable reaction to gluten after having been gluten-free but I think for some people it just happens that way.  Also wanted to mention that the genetic test doesn't really rule out any doubt... it is estimated that approx. 30% or so of the population has the genes but only about 1% actually get Celiac.  And although it is much more rare, there are folks who do not have the genes but do have Celiac.

kareng Grand Master
kareng
Posted

Your blood work should be negative after a few months gluten free.  You can't use that to prove you don't have Celiac.    

notme Experienced
notme
Posted

if you have had a positive biopsy, why would you not be sure if you have celiac?  and that means gluten free for ever.  you have only been gluten free since last year>  i am on my 4th year and i am still seeing improvements.  maybe you are still getting cc'd somewhere.  if you eat out alot, chances are you haven't been very gluten free.

scdurs Newbie
scdurs
Posted
  • Author

Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation.

 

Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all.  My doctor told me that since I am a celiac, I may not notice anything at all.  The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.

scdurs Newbie
scdurs
Posted
  • Author

Hi and Welcome to the Forum!

 

I've never heard of a positive biopsy turning out to be anything other than Celiac - but if I'm wrong about this I'm sure someone will be quick to jump in and correct me.  If you aren't 100% gluten-free (i.e. avoiding cross-contamination, etc.) then you can't expect all of your symptoms to go away.  Not sure why you wouldn't have a noticeable reaction to gluten after having been gluten-free but I think for some people it just happens that way.  Also wanted to mention that the genetic test doesn't really rule out any doubt... it is estimated that approx. 30% or so of the population has the genes but only about 1% actually get Celiac.  And although it is much more rare, there are folks who do not have the genes but do have Celiac.

Interesting... Thanks for sharing the data on the genetic testing. When I was diagnosed the doctor was looking for the cause of abdominal pain and anemia. The doctor was looking for stomach ulcers during the endoscopy and biopsied the small intestine at that time and found the celiac disease. So it was probably more of a "search for other causes" than it was "looking for proof of celiac," if that makes a difference. I haven't had all of the symptoms that everyone describes, so maybe I have not been celiac for very long. My anemia went away fairly quickly, so I'm thinking I didn't have much damage yet. I question the biopsy only because it is interpreted by a human, and in my case it seemed that it was not easy to determine from the biopsy. Maybe I'm reading more into the need for the second doctor's review than I should.  It just makes me wonder how difficult it is to read these biopsies.  Anything that needs to be interpreted can be mis-interpreted, and it seems nothing about celiac disease is 100% for certain at this time.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

FWIW.. I didn't have any obvious symptoms at all when I was diagnosed.  I requested the blood test because Celiac is in my family and I was getting routine blood work done anyhow so I figured I'd ask to have that one thrown in too - fully expecting it to be negative.  My endoscopy three weeks later showed moderate to severe villi damage.  So you're right... there's nothing about Celiac Disease that is 100% certain.

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GF Lover Rising Star
GF Lover
Posted

Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation.

 

Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all.  My doctor told me that since I am a celiac, I may not notice anything at all.  The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.

 

The genetic test IS NOT the gold standard for Celiac testing.  Please make sure you are getting your information from reputable sources ie: not friends and not some odd person on the Internet.  This will only cause you confusion.

 

Tighten up that diet and go over your Kitchen protocols.  And you WILL test negative on blood test AND Negative on Biopsy after being gluten free for a length of time.

 

Good luck to you.

 

Colleen

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