Food designated as “gluten free” really isn’t

[Heather0515]

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

[trents]

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.

[RMJ]

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

Gluten Free Watchdog

[Heather0515]

  On 8/24/2022 at 7:27 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.

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

  On 8/24/2022 at 8:08 PM, RMJ said:

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

Gluten Free Watchdog

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The link worked, thank you! 

[PME]

  On 8/24/2022 at 7:27 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.

Expand Quote  

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