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

Lingering Symptoms


CathleenAnna

Recommended Posts

CathleenAnna Newbie

Dear Celiac Community,

I am now 10 weeks gluten-free after celiac diagnosis through biopsy. Just after eliminating gluten, I felt great for a couple of weeks. Now I am experiencing old symptoms of bloating and pretty significant muscle pain, especially in the right side of my neck. I've done a clean sweep of my kitchen, only eating at home, mainly naturally gluten free foods. Just waiting to feel better! Thanks in advance for your feedback, it is much appreciated during this time!


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



Celiac.com Sponsor (A8-M):



JoyK8 Newbie

I'm sorry to hear that you still aren't feeling well. Have you eliminated gluten in other aspects of your life? It took months to figure out that I was getting exposed to gluten through hair products, cosmetics, shaving cream, and our dogs' food & treats. I've even gotten sick from licking an envelope, and from drywall compound dust when my husband was renovating our basement! My friend is certain that some brands of cigarettes cause her celiac symptoms. Hopefully you will find that the culprit is some hidden gluten. If not, perhaps you should look into the possibilty that you, like so many of us, may have other food sensitivities. Lactose is a common one, especially in the early days (months!) of healing. Also, remember that many naturally gluten-free foods have been cross-contaminated at some point and are not Gluten-Free! Good luck- hope you get it figured out soon!

CathleenAnna Newbie

If not, perhaps you should look into the possibilty that you, like so many of us, may have other food sensitivities. Lactose is a common one, especially in the early days (months!) of healing. Also, remember that many naturally gluten-free foods have been cross-contaminated at some point and are not Gluten-Free! Good luck- hope you get it figured out soon!

Thank you so much, Joy, for your helpful reply. I think my next step will be to eliminate lactose for awhile. I also know that my hairspray contains wheat protein, so time to let that go, too! Take good care ~

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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.