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

Sick Again

precious831

By precious831
in Coping with Celiac Disease

Recommended Posts

precious831 Contributor
precious831
Posted

Uggh, I know I haven't had anything with gluten but for 2 days now I've been having the D again. I haven't had anything with dairy. I'm thinking I'm reacting to soy too, but hoping I'm not. :(

Anyone else intolerant to soy?

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

Celiac.com Sponsor (A8-M):


srall Contributor
srall
Posted

I am. It took me awhile to pinpoint it...I was so happy that I could still have coffee with soy milk, and then the symptoms started. I'm sorry you're not feeling well.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am. It took me awhile to pinpoint it...I was so happy that I could still have coffee with soy milk, and then the symptoms started. I'm sorry you're not feeling well.

Me too. I didn't do soy milk but ate a lot of stuff with soy after I was diagnosed. It took me a while to figure it out also.

Looking for answers Contributor
Looking for answers
Posted

Yes, not fgood stuff unless fermented, in my opinion.

ravenwoodglass Mentor
ravenwoodglass
Posted

Also look back at anything that might have changed in the last week. Have you tried a new lotion, shampoos or gone out to eat someplace? Are you doing any new craft projects or home remodeling? Could you have picked up a virus or perhaps eaten something that gave you food poisoning? I don't know where you are from but there have been some eggs recalled for salmonella recently in I think the midwest.

precious831 Contributor
precious831
Posted
  • Author

Also look back at anything that might have changed in the last week. Have you tried a new lotion, shampoos or gone out to eat someplace? Are you doing any new craft projects or home remodeling? Could you have picked up a virus or perhaps eaten something that gave you food poisoning? I don't know where you are from but there have been some eggs recalled for salmonella recently in I think the midwest.

I heard about the egg recall, does it apply to organic? We use Phil's eggs. I'll have to check it out.

Nothing new has changed, everything's the same, I'm thinking it's soy.

Kelly&Mom Rookie
Kelly&Mom
Posted

Couple of ideas. My daughter continued to have stomach issues after going gluten-free and the Dr. said irritable bowel syndrome is common in people with celiac so you might look up IBS triggers and try cutting out some of those foods.

Not sure how old you are but I started taking a natural estrogen supplement and wow, did it upset my system!!

Goodluck and sorry you are having issues.....

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

Celiac.com Sponsor (A8-M):


butterfl8 Rookie
butterfl8
Posted

YES! Soy is evil. But for me, I can tell the difference between soy and gluten. Gluten means a quick trip to the ladies room, followed by a deep sleep. Followed by no sleep that night, followed by no bathroom for a few days, Ah, the contradictions. Soy gives me high blood pressure, along with stomach pain that feels like toothpicks jabbing through my stomach. That only lasts for a few hours. I avoid both.

-Daisy

precious831 Contributor
precious831
Posted
  • Author

Couple of ideas. My daughter continued to have stomach issues after going gluten-free and the Dr. said irritable bowel syndrome is common in people with celiac so you might look up IBS triggers and try cutting out some of those foods.

Not sure how old you are but I started taking a natural estrogen supplement and wow, did it upset my system!!

Goodluck and sorry you are having issues.....

I do have IBS and I try to eat grain-free as much as possible. I'm also gluten and dairy-free and I guess try to avoid soy now too. I eat only organic food, non-GMO, I don't eat/use anything w/ food colors, additives or anything artificial. I think I live pretty healthy. :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      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...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      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...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

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

      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—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,193
    • Most Online (within 30 mins)
      7,748
    Loiswxm333
    Newest Member
    Loiswxm333
    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

    • 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.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.