The Celiac Safety Act: Progress, Transparency, and the Missing Conversation on Oats
Before diving in, I want to acknowledge the important work the Celiac Disease Foundation has done for our community. As one of the leading organizations dedicated to celiac disease, they have played a significant role in advancing research, raising awareness, supporting diagnosis, and advocating for policies like the Celiac Safety Act that move us toward safer food labeling. These contributions matter, and many people, including myself, are grateful for them.
At the same time, no organization is above thoughtful discussion or accountability. As one of the most influential voices in the celiac community, the Foundation's advocacy positions and corporate partnerships deserve to be transparent and open to respectful examination. Asking questions about whether funding sources or sponsorships could create real or perceived conflicts of interest is not about discrediting the organization, it's about ensuring that advocacy efforts continue to reflect the best interests of the broader celiac community.
I am whole heartedly supporting the Celiac Safety Act but I have concerns about one significant omission: oats. In the Celiac Disease Foundation's advocacy regarding FDA gluten labeling, the organization stated that it recommended keeping the current regulatory treatment of oats. Read more here. The Foundation acknowledges that people with celiac disease should choose oats that are labeled gluten free (here). But are non-certified gluten free oats in the USA safe for celiacs?
The problem is that many people in the celiac community are aware that a gluten free label on oats has not always guaranteed safety. Over the years, concerns have been raised about the processing of oats, testing methods, supply chain contamination, and products that have tested above the 20 ppm threshold despite carrying gluten free claims. Gluten Free Watchdog has posted about this many times around Trader Joe’s products, Cheerios and more. There are countries who have stricter provisions on oats and gluten free labels (Canada), as well as countries that do not allow oats in products labeled gluten free (Australia/New Zealand). Many of these countries include oats with the gluten free labeling requirements. In fact, in Canada, Cheerios voluntarily removed the gluten free label from the Cheerios, yet it remains labeled gluten free in America.
This raises an important question: if oats continue to be one of the most controversial and problematic ingredients for people with celiac disease, why wasn't this issue addressed more directly during discussions about improving gluten labeling? This is a question I submitted on the Celiac Disease Association website and received no response.
What concerns me further is that the Celiac Disease Foundation receives support from major food manufacturers, including companies with significant interests in the oat industry (General Mills: Cheerios). To be clear, accepting corporate donations does not automatically mean an organization is acting improperly but we are seeing an ongoing trend of organizations created to advocate for and protect celiacs accepting funding from manufacturers where research and general celiac experience is not supported. The CD Foundation is not alone in this, Gluten Dude recently shared about Celiac.com promoting gluten reduced beer, which has consistently been shown to not be reliably safe for celiacs. Many nonprofits rely on industry funding to support their work, however the mission and values of the celiac community should be a priority when considering accepting sponsorship and funding. The question remains: What is in the best interest of the celiac community?
When an organization's public policy positions appear to align with the interests of major donors, transparency becomes especially important.
As celiacs, advocates, and consumers, we should be able to ask:
How are potential conflicts of interest managed?
What role, if any, do corporate sponsors play in policy discussions?
Why was oat regulation not a larger focus of advocacy efforts?
What changes, if any, does the Foundation support to improve oat safety for people with celiac disease?
I am not questioning the value of the Foundation's work or the positive impact it has had for many people. I am asking for clarity, transparency, and accountability on an issue that affects the daily health of millions of people with celiac disease. I would also like to see oats added to the Celiac Safety bill.
The celiac community deserves a clear explanation of how these decisions are made and how patient safety remains the top priority.