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

Not Sure If Celiac
0

8 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

2

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

1

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
      104,344
    • Total Posts
      920,486
  • Topics

  • Posts

    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats in the past few months (thanks kids) which I took a lot longer than normal to recover from then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,414
    • Most Online
      1,763

    Newest Member
    Vic40
    Joined