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Endoscopy/Biopsy question - can they tell by sight?


Alibu

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Alibu Explorer

Hi, I have an endoscopy scheduled on Thursday to confirm celiac.  I have a positive tTG IGA test but negative EMA.  I know they'll take some biopsies and those will take 1-2 weeks to come back, but can they see the damage by sight too?   Is it also possible to see absolutely no damage, but then the biopsies come back showing damage?

I'm just going crazy over here not knowing, LOL. 


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cyclinglady Grand Master
28 minutes ago, Alibu said:

Hi, I have an endoscopy scheduled on Thursday to confirm celiac.  I have a positive tTG IGA test but negative EMA.  I know they'll take some biopsies and those will take 1-2 weeks to come back, but can they see the damage by sight too?   Is it also possible to see absolutely no damage, but then the biopsies come back showing damage?

I'm just going crazy over here not knowing, LOL. 

Sometimes the damage can be seen during the endoscopy, but often times it can not.  The damage is microscopic.  My biopsy revealed a Marsh Stage IIIB (moderate to severe patches) and yet my GI said that visually I looked fine.  Go figure!  

 

Alibu Explorer
2 minutes ago, cyclinglady said:

Sometimes the damage can be seen during the endoscopy, but often times it can not.  The damage is microscopic.  My biopsy revealed a Marsh Stage IIIB (moderate to severe patches) and yet my GI said that visually I looked fine.  Go figure!  

 

Oh wow!!  Ok, good to know, thank you!

GF-Cheetah Cub Contributor

"Is it also possible to see absolutely no damage, but then the biopsies come back showing damage?"

Yes.   This happened to my daughter.   After her endoscopy, the two doctor came to tell us that they did not see damage.   But two weeks later, the doctor called to tell us that her biopsies came back positive.   So, just sit tight and wait for the official biopsies result.

squirmingitch Veteran

Ditto what they said. Doctors can rarely actually see the damage it's so microscopic in nature. You really have to wait for the pathology to come back. Once in a while docs will see general inflammation but they can't see the minute details of the villi.

RMJ Mentor

My GI, who is a researcher at a university hospital, had a very good endoscope with enough magnification to see my blunted villi.  I believe there is also some technique involved.  But as others have said, things can be visually ok and still have damage seen under a microscope.

Victoria1234 Experienced

But you can start the gluten-free diet now!


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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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