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

Read The Ingredients, Read The Ingredients, Read The...


Monklady123

Recommended Posts

Monklady123 Collaborator

I know I haven't been at this diet for very long but you'd think I would have learned BY NOW to read labels. I mean, I do read them. But not quite enough. Woke up this morning with that awful gluten headache. I couldn't think what I'd had yesterday that could possibly have caused it.

Then *bing* light bulb moment -- I asked my dd to bring me the bag of Chex Muddy Buddies that I'd just bought. The one that says it "may contain wheat ingredients" but I am not usually bothered by that "may" thing. At least so far I've been lucky not to be. Anyway...definitely no wheat ingredients in there.

However -- "barley malt". sigh... :ph34r:

Now I need to remember that the allergen listing will be for "wheat" but not necessarily for all gluten.

:rolleyes: at me.


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



Celiac.com Sponsor (A8-M):



Mama Melissa Enthusiast

I feel your pain this disease is soo hard to deal with:(

Loey Rising Star

I know I haven't been at this diet for very long but you'd think I would have learned BY NOW to read labels. I mean, I do read them. But not quite enough. Woke up this morning with that awful gluten headache. I couldn't think what I'd had yesterday that could possibly have caused it.

Then *bing* light bulb moment -- I asked my dd to bring me the bag of Chex Muddy Buddies that I'd just bought. The one that says it "may contain wheat ingredients" but I am not usually bothered by that "may" thing. At least so far I've been lucky not to be. Anyway...definitely no wheat ingredients in there.

However -- "barley malt". sigh... :ph34r:

Now I need to remember that the allergen listing will be for "wheat" but not necessarily for all gluten.

:rolleyes: at me.

So sorry that the barley got you. We really need the FDA to do something about labeling. I hope you feel better soon.

Sending healing hugs and positive energy,

Loey

Monklady123 Collaborator

Well, the barley malt was listed in the ingredients, so it was my own fault. I just read too fast and went directly to the allergen listing, forgetting that even if "wheat" isn't listed there is gluten in other things.

lovegrov Collaborator

Well, the barley malt was listed in the ingredients, so it was my own fault. I just read too fast and went directly to the allergen listing, forgetting that even if "wheat" isn't listed there is gluten in other things.

And even if barley were included in the allergens, they don't have to list them at the bottom separately. They just have to be in the ingredients somewhere.

richard

curiousgirl Contributor

And even if barley were included in the allergens, they don't have to list them at the bottom separately. They just have to be in the ingredients somewhere.

richard

I continued to do the same thing when I was first diagnosed...forget to read the labels. Finally, when I would remember to read everything, I'd realize I forget my readers....it's all coming together now, though. Tuff to change old habits. Feel better soon...

AZGirl Rookie

Sorry you feel so bad; hope it lets up soon.

I wanted to thank you for the reminder. I had to come home from work today after getting glutened. I'm trying to investigate the culprit and you reminded me that it's not just wheat that is the culprit, so thanks.

I hope you feel better.


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



Celiac.com Sponsor (A8-M):



Loey Rising Star

Well, the barley malt was listed in the ingredients, so it was my own fault. I just read too fast and went directly to the allergen listing, forgetting that even if "wheat" isn't listed there is gluten in other things.

We really do need for the FDA to recognize Celiac and step it up. There are a lot of products out here that include ingredients that are bad for us and we need a degree in science or medicine to understand them. I really hope you're feeling better.

Sending healing energy,

Loey

Skylark Collaborator

Been there, done that. I hope you feel better soon!

sandsurfgirl Collaborator

Hope you feel better! That darn barley will get ya!

cap6 Enthusiast

Hope you feel better. I did the same thing. Threw a package of soup into the cart that I had purchased before & knew as "safe". They changed the ingredients on me. It's hard to always remember.

Archived

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

  • 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 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

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

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - 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

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

      nothing has changed

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

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    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
      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.
    • Scott Adams
      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.