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

Newbie

Hungry Hope

By Hungry Hope
in Coping with Celiac Disease

Recommended Posts

Hungry Hope Newbie
Hungry Hope
Posted

I'll be turning 40 soon and I've always had tummy issues as long as I can remember. After a lifetime of mysterious medical symptoms (joint pain that's not arthritis, unexplained back and neck pain, terrible GI problems, foggy mind, forgetfulness, terrible fatigue....) I finally found information online about Celiac disease. I went straight to a specialist who took me off of gluten and dairy. I tested negative for Celiac but I believe it to be a false result because my symptoms match so exact to what others suffer with, plus many members of my family have the same problems. I believe my grandmother died from complications related to it. (early 1990s))

Since being gluten/dairy free I'm about 80% better. I'm still getting the hang of it. I'm glad I found this message board!!! Reading the posts here have been sooo helpful! <3

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

Celiac.com Sponsor (A8-M):


kwylee Apprentice
kwylee
Posted

I am extremely intolerant to gluten and still tested negative for Celiac disease. If removing gluten is making you better, please stick to it. I've been strictly gluten/dairy/soy free for 16 months and it's bettered my life in so many ways.

Tira Newbie
Tira
Posted

Nice to meet ya Hope! I agree, I am new to this site too and I love it. :)

Hungry Hope Newbie
Hungry Hope
Posted
  • Author

Thanks Kwylee and Tira :-) I wish I'd known about a gluten free diet years ago. Being so sick all of those years affected my life in major ways.

Di2011 Enthusiast
Di2011
Posted

Thanks Kwylee and Tira :-) I wish I'd known about a gluten free diet years ago. Being so sick all of those years affected my life in major ways.

Ditto..

and I didn't want testing just wellness

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,202
    • Most Online (within 30 mins)
      7,748
    Nana Susie
    Newest Member
    Nana Susie
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      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
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      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
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      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.