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

Should I Have An Endoscopy? (long)


FreeTime

Recommended Posts

FreeTime Apprentice

I was diagonsed with IBS 2 years ago. No matter what I eat, I still get sick. However, one item that I have not cut out and have with every meal is gluten. My daughter was diagonsed with celiac disease in December. Today I saw my gastrologist again and explain that my child has been diagnosed and I researched the disease and learned that those with IBS are often misdiagnosed. I explained that the Childrens hospital completed a blood test on me and that it was negative. He said that the blood test are pretty relaible and that celiac is hard to diagnose 100% without and endoscopy but he did think that it was necessary unless I really wanted one. Then he asked me what I wanted to do. I asked him again what he thought he talked about how it can show up in rashes etc., and then the next thing I knew he was scheduling the endoscopy. I really didn't ask any questions or give much to the conversation and I now I feel stupid for it. My hubby says that I should have it done as my daughters doctor had said if the blood test was negative he wouldn't but anyone through the test. I am concerned that I have something and maybe it will show up in the test. I had a colonoscopy and everything was okay. Help, should I do it? Thanks


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

If you haven't gone gluten-free yet, and the endoscopy is already scheduled, I'd say, go for it. If it is positive, you have an official diagnosis. If it is negative, go gluten-free anyway to see if it makes a difference. You can't really lose either way, in my opinion.

FreeTime Apprentice

Thanks for the comment. I have not gone gluten free in anticipation of possibly needing the test. However, the Dr. asked me, have you gone gluten free to see if that helps your IBS? I said no that I didn't want to have a false celiac test. He said, "oh."

Archived

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

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

    • Total Members
      133,201
    • Most Online (within 30 mins)
      7,748

    Karen LK
    Newest Member
    Karen LK
    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

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.