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

Hitting Rock Bottom Today


georgiagirl

Recommended Posts

georgiagirl Rookie

Hi everyone,

I'm three months diagnosed, and three months gluten free. I ate something last night at the beginning of a great concert. It was labeled as gluten free, but obviously had gluten in it, or was cross-contaminated.

The abdominal pain was excrutiating. I suffered through the concert (miserable) and came home and cried myself to sleep.

I've had a positive attitude to this illness up till now. Today I've hit rock bottom. Learning that I can't trust the "gluten free" food is devastating. I feel like all the hard work and discipline I've put into the last 3 months has been wiped out by a company that's careless about insuring their products aren't cross contaminated.

:(


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



Celiac.com Sponsor (A8-M):



chrissy Collaborator

try not to get too discouraged. there are so many things that can cause symptoms similar to "glutening" symptoms. it can be too easy to automatically assume that gluten is the culprit.

Guest j_mommy

I'm sorry you had a bad expierence!!!!

Always check labels....even if it says gluten-free and CC is an issue!

but as Chrissy said it could have been something else entirely.....food left out too long, something you drank, a bug ect!

I hope you feel better soon!

Susanna Newbie

Bummer--so sorry you were violated that way. That really sucks.

But.

The good news is that over all, since you went gluten free, your gut has been healing. Likely, you've been feeling better too, no? And, by going gluten-free, you've been lowering your risk of all kinds of BAD health problems down the line. GOOD FOR YOU! So, put your focus on the fact that you're doing the right thing for your body. You're doing your best. Pat yourself on the back for making the big change and sticking with it. Don't expect perfection from yourself or the food industry. Forgive the food or the manufacturer of the food that made you sick. Accept that once in a while, you or someone else might make a mistake that gets you temporarily sick, and use those times to appreciate how GOOD you feel the rest of the time. Forgive the mistake. Learn from it. Stay gluten free. Feel better.

I'm just 15 months into my gluten-free life, and I got glutened recently at a restaurant where I'd eaten gluten-free successfully several times. Will I go back? I think I will, but I learned a few things about how to order from this recent glutening and you better believe I'll be savvier next time. I learn something from each glutening that will help me protect myself better in the future.

It really does take time to adjust to this disease--I was much more upset by setbacks like the one you just had when I was just diagnosed. I tolerate these bumps in the road more in stride now, and I bet you will too in time.

Good luck.

Susanna

chrissy Collaborator

gerogiagirl---in case it helps any, feeling discouraged about this disease probably gets all of us, occasionally, at times. my girls have been diagnosed for about 1 1/2 years-----and i still occasionally cry about it----i just don't let them know. i can't tell you how much i wished it was me instead of my kids when they got the diagnosis.

georgiagirl Rookie

Thanks so much to all of you who replied and offered me support. I can't tell you how much it means to me. Thank you, thank you, thank you. I'm feeling better now, both physically and emotionally. Thanks for letting me wallow in a bit of self-pity for a while.

Archived

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

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

    • Total Members
      133,199
    • Most Online (within 30 mins)
      7,748

    Andrea Spencer
    Newest Member
    Andrea Spencer
    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.