Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Confused - Please Help


Nat1

Recommended Posts

Nat1 Apprentice

I am totally confused and would appreciate some help before I see my doc in a few weeks.

I had been following a gluten-free diet (well sort of) on my own for a while because I self-diagnosed myself with gluten intolerance. Several months ago I started having pains in my stomach, on and off. So I had an endoscopy done on the stomach only. The biopsy made them suspect celiac and I had the blood test done which was negative...

When I just talked to the nurse, I told her I wanted an endoscopy done in my small intestines to which she replied they didn't do it. You can only have a colonoscopy or endoscopy of the stomach, not the intenstines. This is where I got confused and asked her how they figured out if the villi in the small intestine was flat or damaged...Now she was confused and didn't make any sense. We both decided it would be better for me to talk to the doctor.

I want to have a clear understanding of this before I see him. So, how exactly does this work? Everybody is talking about endoscopy showing the condition of the villi, so I would think the stomach endoscopy wouldn't do it. What am I missing here? Do they actually do an upper endoscopy for the small intestines?

Thanks for your help!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



psawyer Proficient

Yes, the villi that get examined and from which the biopsy to diagnose celiac disease are in the small intestine. The endoscopy can only see the first part of the intestine, which is over 20 feet long. Celiac disease cannot be determined from a colonoscopy, nor by a biopsy of the stomach lining.

My endoscopy in 2000 showed serious damage to the villi. A repeat in 2005 showed normal villi. I had completely healed on a strict gluten-free diet. If you have been gluten-free, or close to it, there may not be enough damage to be detected.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Second chance

    2. - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      13

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    3. - Scott Adams replied to JamieAnn's topic in Gluten-Free Restaurants
      2

      Jersey Mike’s option: Gluten-free bread

    4. - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      13

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,523
    • Most Online (within 30 mins)
      7,748

    CWiz76
    Newest Member
    CWiz76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Hello, I'm I crazy, nieve, or atomistic? I reached out to my former pcp of 25 years on the medical app today.Reading on the National Library of Medicine 75.6  physicians don't know celiac disease.To be fair he is primary and with the lack of knowledge, I did reach out because he was my Dr for 25 years.I do prefer his app than the one I currently have that was ignite of the disability celiac circus name chaser thanks to the one that  I currently have Since May 31, 2025 to present.
    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.