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

Dietary Avice Please


oipteaapdoce

Recommended Posts

oipteaapdoce Newbie

I have been gluten free for 1 1/2 yrs now and still get really severe pain. I'm not sure what I am doing wrong. For example I have even gone so far as to get my own toaster, never be in the same room as gluten, read every label etc.

The pain is nearly all the time now, so I figure that some other foods might be affecting me, from perhaps the intestinal dammage I prob have from years of eating gluten?

Any ideas would be great!

Thanks :)

Athena


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



Celiac.com Sponsor (A8-M):



Guest Viola

Hello

You didn't say where the pain is, or what kind of pain. It would be helpful to know :)

Nadtorious Rookie

What is your diet like-(in detail)-cosmetics, medications, everything that goes into your mouth?

Are you lactose intolerant?

I had the same problems up til last summer (I've been diagnosed for a little over 2 years now), but a diet change helped significantly.

Nadia

judy05 Apprentice

I had a pain in my right side for a year after going gluten-free. My GI doc

thought it was gallbladder pain but all of the scans, ultrasounds,etc

came back showing a normally functioning gallbladder, they even

suspected a spasm in the common duct, but an upper GI ruled

out that, but did reveal severe reflux which was confirmed with

the endoscopy. I have been on Nexium for quite a while and the

pain just gradually went away. When I had the pain it went around

the right side and into my back. I think it was from gluten and it

took that long for the damage to heal. Hope you feel better, it

does get better. ;)

jknnej Collaborator

I have weird pain in my right side since going gluten-free, too! How odd; I've been worried that it was something serious buy my doctors have not wanted to do any tests.

I feel a little better after reading your post, thanks!

Check your diet, like the others said. You could be lactose intolerant OR corn or other food allergies could be making you sick. I went off dairy and felt even better immediately. Then I went off corn and it got even better; I think it's all a matter of eliminating foods until you feel better.

There are ways to be creative with cooking; you can still eat things that taste good.

Archived

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

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

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    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.