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

Struggling with symptoms and need some advice


will4318

Recommended Posts

Fenrir Community Regular

So they retested you and it came back positive?


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



Celiac.com Sponsor (A8-M):



will4318 Apprentice
18 minutes ago, Fenrir said:

So they retested you and it came back positive?

Yes, I eventually had a pill cam test looking for crohn's disease, but instead they thought they saw some villous atrophy so I had another biopsy which was positive this time. 

Fenrir Community Regular

Nice! You're lucky. Many people's Dr. give up after the first one and refused to go any further. At least you have your answer. 

It takes time to heal. It took about a month for most of my symptoms to go down quite a bit and about 6 months for a full recovery.

cyclinglady Grand Master

Thank you for reporting back.  I am sorry that you had to wait two years before getting a correct diagnosed (missed small intestinal damage during the first endoscopy).  Glad the pill camera caught damage allowing for the second endoscopy.

I am going to bookmark your post to show persistence in obtaining a diagnosis and the supporting fact that small intestinal damage can be spotty.  

I hope you recover fast!  

will4318 Apprentice
2 hours ago, Fenrir said:

So they retested you and it came back positive?

Yes, I eventually had a pill cam test looking for crohn's disease, but instead they thought they saw some villous atrophy so I had another biopsy which was positive this time

 

41 minutes ago, cyclinglady said:

Thank you for reporting back.  I am sorry that you had to wait two years before getting a correct diagnosed (missed small intestinal damage during the first endoscopy).  Glad the pill camera caught damage allowing for the second endoscopy.

I am going to bookmark your post to show persistence in obtaining a diagnosis and the supporting fact that small intestinal damage can be spotty.  

I hope you recover fast!  

Thanks both, I was seeing a private consultant thanks to insurance and he was very persistent thankfully 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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.