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
Nat1
Posted

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
psawyer
Posted

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.

Go to topic listing

  • 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. trents
      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test interpretations

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated...
    2. MicG
      - MicG posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test interpretations

      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    3. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      how long does it take for the genetic blood test for celiac to come back?

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood...
    4. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Interestingly enough, while I hear you. I completely disagree. Gluten has not been 100% removed. There’s still trace amounts under the regulated amount per millions allowed. I gave only figured out in the last year, while reading chats on this site, of other celiacs still having issues and how they figured it out. If enough companies allow slight amounts o...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      I understand why that feels frustrating, because the labeling can definitely seem confusing. In the case of products like King Arthur’s gluten-free bread flour that contain gluten-free wheat starch, the wheat starch has been specially processed to remove the gluten proteins that trigger celiac disease. Because it originates from wheat, U.S. labeling laws s...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,653
    • Most Online (within 30 mins)
      7,748
    daweesa
    Newest Member
    daweesa
    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

    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test interpretations

      By MicG · Posted

      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back?

      By catnapt · Posted

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
×
×
  • 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.