Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Food designated as “gluten free” really isn’t


Heather0515

Recommended Posts

Heather0515 Newbie

Hi everyone. I am new to this forum. I was diagnosed with celiac two years ago. I am writing today because I have learned something about gluten free labeling that has me concerned. I started using a protein shake  that had the gluten free designation on the front. It also was promoted to me as gluten free because their original was not gluten-free and it was suggested I use the “gluten free” one since I had celiac. Fast forward a few weeks on the shake and my skin breaks out into full blown dermatitis herpetiformis and I had two migraines in a week (neither happen to me unless there’s an exposure to gluten). So after searching through what I was eating I learned that the shake was made in a facility that also processes wheat. How can a product be promoted as safe and “gluten free” if it is not? I also learned that companies  don’t even have to put an allergen warning on the back of their products so products that say “gluten free” could still be processed in a facility that also processed wheat and we don’t even know it by looking at the box/bag. These two things really shook me up because I try so hard to make sure I am not exposed. Any insight or explanation on how we can fight this? Has anyone else had the same issue with labeling?  Is there a place where people are working on fighting this because I’d like to be proactive. Thank you. 
 

Heather

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, Heather!

According to FDA guidelines, food products may use the "gluten free" label as long as the concentration of gluten does not exceed 20ppm. So, according to regulatory standards they can still have very small amounts of gluten and advertise as gluten free. This standard works for the majority of celiacs but there are some who are much more sensitive for whom 20ppm will cause a reaction. 

The other possibility is that some batches of the gluten free product, for whatever reason, did not meet the requirement. They don't test every batch. In fact, my understanding of the FDA regulations is that the companies aren't required to test at all unless challenged to do so by some consumer action against them. However, I'm pretty sure most of them will not be willing to take that chance and will test to make sure, at least at intervals.

My suggestion is that you look for the label "Certified Gluten Free" as opposed to "Gluten Free". Certified gluten-free products are held to stricter standards.

Link to comment
Share on other sites
RMJ Mentor

This organization fights for accurate labeling (hope I’m allowed to link her site here).

Gluten Free Watchdog

Link to comment
Share on other sites
Heather0515 Newbie
59 minutes ago, trents said:

Welcome to the forum, Heather!

According to FDA guidelines, food products may use the "gluten free" label as long as the concentration of gluten does not exceed 20ppm. So, according to regulatory standards they can still have very small amounts of gluten and advertise as gluten free. This standard works for the majority of celiacs but there are some who are much more sensitive for whom 20ppm will cause a reaction. 

The other possibility is that some batches of the gluten free product, for whatever reason, did not meet the requirement. They don't test every batch. In fact, my understanding of the FDA regulations is that the companies aren't required to test at all unless challenged to do so by some consumer action against them. However, I'm pretty sure most of them will not be willing to take that chance and will test to make sure, at least at intervals.

My suggestion is that you look for the label "Certified Gluten Free" as opposed to "Gluten Free". Certified gluten-free products are held to stricter standards.

Thank you very much for this insight. I am and will be much stricter about what I’m choosing off the shelves! 

20 minutes ago, RMJ said:

This organization fights for accurate labeling (hope I’m allowed to link her site here).

Gluten Free Watchdog

The link worked, thank you! 

Link to comment
Share on other sites
PME Explorer
On 8/24/2022 at 3:27 PM, trents said:

Welcome to the forum, Heather!

According to FDA guidelines, food products may use the "gluten free" label as long as the concentration of gluten does not exceed 20ppm. So, according to regulatory standards they can still have very small amounts of gluten and advertise as gluten free. This standard works for the majority of celiacs but there are some who are much more sensitive for whom 20ppm will cause a reaction. 

The other possibility is that some batches of the gluten free product, for whatever reason, did not meet the requirement. They don't test every batch. In fact, my understanding of the FDA regulations is that the companies aren't required to test at all unless challenged to do so by some consumer action against them. However, I'm pretty sure most of them will not be willing to take that chance and will test to make sure, at least at intervals.

My suggestion is that you look for the label "Certified Gluten Free" as opposed to "Gluten Free". Certified gluten-free products are held to stricter standards.

Thanks so much for the heads-up about "Certified Gluten Free" labeling, Trents! Hard to find but worth seeking! 

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,815
    • Most Online (within 30 mins)
      7,748

    Angie Mull
    Newest Member
    Angie Mull
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      It will not undo all of the healing.  If it did, diagnosis of celiac disease would be much easier!  To have enough damage to see on an endoscopy requires several weeks of gluten ingestion. 
    • Jean Shifrin
      HI, I am new to this and am still in 'repair' mode, which I know will take time. But I'm wondering if anyone knows what happens if you ingest gluten after you have made a lot of progress in repairing your villi. Does anyone know if you just have a short-term issue? Or does an accidental ingestion of gluten derail all the work you've done and set you back to square one? Thanks.
    • Scott Adams
      Hydrolyzed wheat is wheat protein that has been broken down into smaller components through a chemical or enzymatic process called hydrolysis. This ingredient can be found in various products, including cosmetics, personal care items, and some food products. For people with celiac disease, hydrolyzed wheat is generally not safe to consume because it still contains gluten proteins, even in its broken-down form. Though hydrolysis reduces the size of these proteins, it doesn’t fully remove the components that trigger an autoimmune response in people with celiac disease. In food products, hydrolyzed wheat protein still poses a risk and should be avoided. With regard to the McDonald's French fries, the total amount of hydrolyzed wheat in the flavoring is small, and the amount that ends up in an order of fries is even smaller, and likely below 20ppm. McDonald’s states that the fries are gluten-free by ingredient and free from cross-contact with gluten-containing foods in their dedicated fryers. Third-party tests and statements by McDonald's confirm gluten levels are below the FDA threshold for gluten-free labeling (20 parts per million or less). So, while McDonald’s USA fries may be gluten-free based on testing, some people with celiac disease still approach them cautiously due to the past concerns and individual sensitivities.
    • trents
      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
    • Scott Adams
      There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.
×
×
  • Create New...