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

Cd, Hepatitis And Immunosuppresants


umahal

Recommended Posts

umahal Newbie

Dear all

I am a new member and thought I would write about my current experiences, and see if any of you have any feedback you can give me. I am 34 and have been questioning whether I have celiac disease for over a year now. Ever since I was a teenager I have suffered with IBS and interestingly, some people with IBS have underlying celiac disease. However, more intriguingly is my family history. My father has diagnosed celiac disease and he only found out about 10 years ago when he developed DH. He appears to be fine on a GFD and has had no problems. I would bet my house that my Grandma has celiac disease as she shows all the signs, ie: bowel problems, hopeless addiction to bread, osteoporosis and anemia. However, she is 90 and won


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



Celiac.com Sponsor (A8-M):



seeking-wholeness Explorer

umahal,

Welcome to the board!

Your personal and family histories certainly make ME suspect that you have celiac disease! All the pieces fit together so neatly, except for the negative blood work! It's true that your being on a gluten-free or nearly-gluten-free diet may have skewed the results, and I suspect the immunosuppressants may have contributed, as well.

I just found this article while I was browsing the site this evening. It's rather technical, and it pertains to patients with refractory celiac disease (which does not respond to the gluten-free diet) rather than regular celiac disease, but this part caught my eye: "Treatment consisted of azathioprine combined with prednisone for 1 year, which was tapered and, if possible, stopped. Results: Clinical improvement was seen in nearly all patients.... Eight of 10 RCD type I patients responded histologically, and complete normalization of villi was seen in four patients." From this I conclude that azathioprine may lessen the effects of celiac disease, which may very well translate to fewer antibodies in the bloodstream.

If you are not interested in attempting a gluten challenge at this point, have a look at the website for Open Original Shared Link. This lab can perform stool testing for celiac disease-related antibodies that is reportedly MORE sensitive than bloodwork AND able to detect celiac disease for a longer time after a patient goes gluten-free. They can even do a gene test!

I hope you find this information helpful, and I wish you luck as you pursue a conclusive diagnosis!

Archived

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

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

    • Total Members
      133,200
    • Most Online (within 30 mins)
      7,748

    TGE
    Newest Member
    TGE
    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.