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

A Cautionary Tale: Symptoms Are Not Always From Gluten


General Ludd

Recommended Posts

General Ludd Rookie

I am writing with a cautionary tale. When those of us with food sensitivities have a GI problem, our celiac/gluten sensitivity, lactose intolerance, etc are almost always the first thing we go to. For over a two year period I had become convinced that my gluten sensitivity was becoming worse and worse. By November of 2012 I was having episodes of severe pain in my upper abdomen that also were accompanied by fever and chills. (It had been about 20 years since I'd last had a temperature over 100°). I was starting to make absurd conclusions about where the gluten was coming from (given how strict I've been with my gluten-free diet for over 3 years--I am very very strict). Absent any reasonable gluten sources, I began suspecting I'd developed sensitivity to corn or soy. But the events seemed unrelated to my consumption of those substances.

After an emergency room visit at the end of December and, and a miserable January, I finally got in to see an insightful GI doc, we began looking for other explanations. He scheduled some tests right away including an ultrasound (came back negative for disease or injury), and a CT scan with contrast dye and barium "smoothie". Much to my shock the radiologists found a tennis-ball sized mass in my mesentery. I am just recovering from the biopsy today to determine if it is malignant, but either way it will have to come out.

So my recommendation is that, along with the usual questions about whether it might be another food sensitivity, it is very well to consider that if your symptoms become increasingly or inexplicably worse, it may be worth asking your doctor to do a thorough exam for other possibilities. Especially if they are accompanied by chills or fever.


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



Celiac.com Sponsor (A8-M):



gatita Enthusiast

Oh my, how scary. I sure hope you get good news from the biopsy!

Thank you so much for the cautionary message....You are so right, I think it's often too easy to assume our gluten troubles are the cause of all our problems.

Tiredsean Explorer

Yeah this is why I had major testing done before falling on food allergies.Blood tests galore,MRI,echo scan of abdomin and kidneys etc ,came back neg.I truely hope the best for you and a speedy recovery

Archived

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

  • 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):
  • 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.