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. The FDA allows foods containing oats to carry a gluten free label if they test below 20 ppm. The FDA does not require food manufacturers to test their ingredients or finished products for gluten to use a "gluten free" label, but it holds companies fully responsible for ensuring the food contains less than 20 parts per million (ppm) of gluten and has no prohibited grains. 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 oats, including Trader Joe’s products, Cheerios and more. You may be wondering how the USA compared to other countries. There are countries who have stricter provisions on oats and gluten free labels (UK, Canada), as well as countries that do not allow oats in products labeled gluten free (Australia/New Zealand). Most all other 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. Oats in Canada can be consumed if specified as “gluten-free oats” in the list of ingredients, which does not mean they require a purity protocol, but more scrutiny seems to be placed on oats. In the UK, oats are included legally as a gluten containing grain. Oats do not inherently contain gluten but due to ongoing research and the contamination risk from other grains containing gluten, oats are deemed to be gluten within law. Please scroll down to the bottom to view more reading on oats.
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. I also have to wonder why they are silent regarding the ADINA Act, which would require gluten labeling in medication. The CD Foundation is not alone in this conflict of interest, 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. We all deserve for the celiac safety act to include oats.
Response from the Celiac Disease Foundation
In response, they linked me to read more here. Where is provides this explanation: Gluten is naturally found in wheat, barley, and rye, which is the scientific basis for the bill’s definition of “gluten-containing grains.” Oats do not naturally contain gluten, so they are not part of that category. The complication with oats is cross-contact: oats are often grown, transported, or processed alongside wheat, barley, or rye, which can introduce gluten into oat products even though pure oats themselves are not a gluten-containing grain. A small minority of people with celiac disease — early research suggests roughly 1 in 30 — are especially sensitive to a protein in oats called avenin, separate from the immune response to gluten itself. For that group, avoiding oats entirely is the right choice, which is exactly why oat content labeling matters and is already addressed through existing gluten-free certification and labeling practices, not by redefining oats as a gluten-containing grain. Including oats as a gluten-containing grain would unnecessarily restrict the diet of the majority of people with celiac disease who can safely eat pure oats carrying a gluten-free label.
My thoughts: I do not feel like current FDA requirements for gluten free labeling around oats protect celiacs and I do not believe research supports this, as evidenced by both Canada and the UK’s stances around oats.
Further Reading
Gluten cross contact in oats: retrospective database analysis 2011 to 2023
Are Oats Gluten-Free? What It Means For GF Cheerios & Oreos
Role of oats in celiac disease
Summary of 2024 oat testing data from Gluten Free Watchdog
Questions and Answers on the Gluten-Free Food Labeling Final Rule
Gluten Labeling Guidance - UK’s Food and Drink Federation
Allergen-free, Gluten-free, and cross-contamination statements- Canada
Avenin Study- Beyond Celiac