FDA responds to our concerns about their temporary policy on food labeling changesTricia Thompson
The FDA has responded to the group letter submitted by Gluten Free Watchdog and six other patient/consumer advocacy and professional groups outlining our concerns about FDA’s temporary policy on food labeling changes during the COVID-19 pandemic and the impact it may have on the celiac disease community.
The FDA response further clarifies agency position and elaborates on the wording used in their guidance document. Regardless, it appears unlikely that FDA will be amending the current guidance. The agency has however posted a Q&A that focuses on allergens but also mentions gluten. See GUIDANCE.
The yellow highlights in the posted letter were added by Gluten Free Watchdog.
See screen shots below and also our original LETTER and the FDA RESPONSE.
These vital food safety issues regarding gluten must also include — and name “Non-Celiac Gluten Sensitivity,” a formal medical diagnostic name for what can be a debilitating illness upon ingestion of gluten ingredients and cross-contaminatiom and cross-reactive foods (that metabolically the affected person’s system reacts to as if the foods were gluten)
Though NCGS’s etiology and long-term effects are still not well-researched or well-understood, episodes of exposure can be debilitating depending on the affected individual’s continuum of reaction. I, for example, have what one of my former GI doctors describe as a cytokine-like reaction, with nearly full-body symptom manifestations and that last for not less than 72 hours in an episode.
I read the FDA letter, dated (?) June 20, 2020, and it only states “Celiac” and makes no mention of Non-Celiac Gluten Sensitivity. The language, and inclusivity, of all discussions, improvements in regulations for production, third-party supplier accountability, plant and equipment cross-contaminant sources, oversight of those regulations, all should include when referring to Celiac, as well and equally NCGS.
Cross-contamination sources are a muddy water and ubiquitous, and I don’t see this discussion being fully identified and comprehensively addressed in general — not only in this FDA reply. How does the gluten-free watchdog community — your organization — address this rather daunting and highly contributory factor to people becoming “glutenized” and sick over and over again unwittiingly.
Thank you for your thoughtful message. Food safety issues regarding gluten are crucial for everyone living with a gluten-related disorder. These particular communications with FDA are targeted and focus on celiac disease because in the view of FDA the gluten-free labeling rule was defined to “benefit people with celiac disease.” However, we all know that improvements to food safety related to gluten will benefit all folks with a gluten-related disorder.
Regarding cross contact, there are numerous posts on Gluten Free Watchdog. Please go to the news tab and search under “cross contact” and “contamination.” We also published two of the first articles in the scientific peer review literature on gluten cross contact in the US– See https://www.glutenfreewatchdog.org/news/to-decrease-your-risk-of-cross-contact-with-gluten-choose-naturally-gluten-free-grains-seeds-and-legumes-labeled-gluten-free/ and https://www.glutenfreewatchdog.org/news/naturally-gluten-free-grains-and-gluten-contamination/ and