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

My Stupid Mistakes - Not Because The Gluten Was "hidden" Because This Is Hard!


lucia

Recommended Posts

lucia Enthusiast

I've been working on cutting gluten out of my diet now for 5 weeks. The impact of a gluten-free diet is immediate. My GI symptoms clear up entirely after 5 days.

But, I keep accidentally eating food with gluten. I recognize my mistakes as soon as I realize the stomach cramps and pain are back. In retrospect, the mistakes seem so stupid, but I'm still making them. Partly, this is a result of "brain fog". But, I still feel stupid and frustrated.

List of my mistakes:

1. Cafix: a coffee substitute made of barley. I was a week into the new diet. I pretty much stopped eating much of anything during that week. I didn't realize that barley, as well as wheat, had gluten. The worst part is that I turned

2. Ice cream. I read that ice cream was okay. After being glutened, I searched online and found that not all ice cream brands are okay.

3. A superfoods bottled juice drink. It contained wheat grass and barley grass. It turns out that these can be contaminated with wheat and barley seeds. Especially frustrating since the drink was all-organic, super-healthy, blah, blah, blah.

4. Hot chocolate from a cafe. I make this at home, and my hot chocolate doesn't have gluten. I left my keys in my apartment last night and had to wait for my husband to come home. I waited in a cafe down the block. I had to order something. They must have used a mix. Next time, I guess my drink of choice will have to be herbal tea.

Argh!

It's hard to imagine this as a thing of the past. I can't believe that a single mistake like this will keep me on the couch for 5 days at a time.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hey, I'm sorry you keep getting glutened - as you found out, it is very easy to do. Word of caution: I have even found gluten in herbal tea :blink: It was one of the Celestial Seasonings teas. Now doesn't that just make your day? :lol:

Midwest Newbie

Yeah, I was bitten by the ice cream too. I checked the ingredients and it looked safe. Later I realized I was glutined and that was the only food I knew was different from my routine. I checked the labeling again and in small print at the bottom was the disclaimer about cross contamination possibilities with wheat. Lesson learned on reading *everything* on the packaging.

For me, I got hit with some hidden gluten in prescription-strength codeine cough syrup. I checked the Walgreens bag info (the bottle itself is just that generic brown, plastic bottle) and there was no ingredient list. So I figured it must be safe as it couldn't possibly have G in it. The next morning I was sluggish and the crappy feeling is still hanging in there... I suppose they used it to thicken the syrup which I heard does happen.

(Which flavor of tea? I thought all C.S. herbals were gluten-free! Scary...)

mushroom Proficient

(Which flavor of tea? I thought all C.S. herbals were gluten-free! Scary...)

I'm sorry, I can recall the flavor now or I would have mentioned it. It was just a heads up to read ALL labels.

jackay Enthusiast

I'm sorry, I can recall the flavor now or I would have mentioned it. It was just a heads up to read ALL labels.

Celestial Seasonings lists on their website and on the packaging if the tea is gluten free. The boxes have a star with a K in the middle and also say gluten free. My boxes are old so maybe the symbol has changed.

lucia Enthusiast

Thanks for checking in about my message. It's depressing that I can't even count on herbal tea to be gluten free. I remember now that many teas have barley.

It sounds like you all are scrupulous about checking labels, checking brands, writing to manufacturers about products, talking to waitstaff at restaurants. I guess that's what it takes to stay healthy.

I've never been very good at advocating for myself. (I didn't grow up in a family or situation where that was encouraged.) Maybe a positive thing about this condition for me is that I'll be forced to learn how to do that.

Skylark Collaborator

The diet takes a lot of research and practice. You will get better at it!


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



Celiac.com Sponsor (A8-M):



drloots Newbie

sorry to hear that. What I found to work is reading about what is safe and isn't in general then as your shopping read labels and keep track of what you can eat. Google is another great way to see what is gluten-free b4 you shop. If you have an iphone there is an app called is that gluten-free which has a bunch of everyday products. Cheers! Jason

Juliebove Rising Star

I learned the hard way to read every label, every time. And at a restaurant, never assume it is safe. Always ask. Daughter will only drink water now in a restaurant. She knows that is safe.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,203
    • Most Online (within 30 mins)
      7,748

    Sarahmegan
    Newest Member
    Sarahmegan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.