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

Not Sure If This Is A Gluten Reaction


hpymomof3

Recommended Posts

hpymomof3 Rookie

My 15 year old daughter went on a gluten free diet about 5 months ago. She had never had any intestinal issues. Her ONLY symptom was insomnia. The insomnia hadn't improved at all after being gluten free for 5 months. This past week we went to two different doctors (sleep specialist and gastroenterologist) Both of them strongly feel that my daughter is not gluten intolerant. She tested negative on a saliva test but borderline positive on the Enterolab test. She scored an 11. They also feel that she should have had some improvement by now since we had been very strict with her gluten free diet.

So we decided to have her start eating gluten again. Friday afternoon I gave her a few goldfish crackers. She had no reaction. Friday afternoon she had a few more crackers. For dinner she had a gluten-free dinner but I also gave her one breaded cheese stick. She still had no reaction. Saturday morning she had a waffle with no reaction. For lunch she had a cheeseburger (with bun) and no reaction. Last night for dinner she had pizza filled poppers, which were breaded. She didn't have a reaction to any of these foods but around 2 am last night she had diarrhea. Now I am wondering if it is a reaction or it is just coincidence. I kind of feel that she would have had some kind of reaction on Friday if it was the gluten.

Is it possible that anyone would have a reaction (gluten intolerant or not) after being off of gluten and then going back on it? I'm also wondering if it is possible that she just had a bad reaction to that kind of food. I know once in a while a particular food just doesn't agree with you but that you are fine the next time you eat it.

Other than the diarrhea she seems fine and doesn't really have cramps, no brain fog, etc. Any suggestions?


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



Celiac.com Sponsor (A8-M):



nasalady Contributor

It can take me anywhere from 8 to 72 hours to react to gluten. Everyone is different. Some people react VERY quickly (minutes), others don't.

If it were my daughter, I would assume that the diarrhea was a reaction to the gluten; that IS the classic reaction, after all. And I would believe her physical reactions to a food over anything told to me by a medical professional .... you have to go with reality, with what you see with your own eyes, not what the AMA wants you to believe is reality.

I'm not anti-doctor, but many of them have been brain-washed into believing that it's extremely rare to have a problem with gluten, and it's just NOT. Your daughter needs you to be her advocate here, and to go with what's best for her. If she has a gluten problem, this is serious; allowing her to continue to eat gluten can lead to enormous health problems in the future, including other autoimmune diseases like lupus and autoimmune hepatitis, or even cancer!

Take it from me.....I've probably had celiac disease since I was much younger than your daughter, but was just diagnosed at the age of 52. Just look at the list of illnesses I have in my signature. I know what I'm talking about. :(

Good luck!

JoAnn

Archived

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

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

    • Total Members
      133,200
    • Most Online (within 30 mins)
      7,748

    TGE
    Newest Member
    TGE
    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.