Consumer Experiences with Gluten Labeling
Share your experience with gluten labeling in a short anonymous survey
What is this?
On January 22, 2026, the FDA issued a Request for Information on gluten labeling and the prevention of gluten cross-contact in packaged foods. The agency described this as a first step toward improving transparency in ingredient disclosures for health conditions such as celiac disease.You can read the full FDA news release here.This project collects anonymous consumer experiences related to gluten labeling, gluten-containing grains, oats, and food purchasing decisions to help us write and submit a public comment to the FDA. The survey is designed to make it easy to share experiences in a simple, structured way that aligns with the types of questions the FDA has asked.This project is not intended to produce scientific or representative data. Instead, it documents how real people experience and navigate these issues in everyday life.The deadline to submit a public comment is March 23, 2026. Anyone may submit their own comment in addition to completing this survey.
Who we are
We are Stephen Simalchik and Ariel Stess, a married couple living in Illinois’ 9th Congressional District. Ariel was diagnosed with celiac disease in 2015, and navigating gluten labeling, cross-contact, and ingredient transparency is part of our everyday life.Stephen works for national healthcare nonprofits. Ariel is a professional writer and professor at Northwestern University.This project is personal and independent. It is not affiliated with or endorsed by any organization, advocacy group, employer, or the FDA. It is a good-faith effort to gather and summarize consumer experiences in a way that reflects the kinds of information the FDA has said are useful.For questions or concerns:
[email protected]
What will happen with the data
Responses will be collected anonymously and reviewed for common themes and examples. We will summarize what we learn and share it as part of a public FDA comment, highlighting real-world experiences and how labeling affects everyday decisions and behaviors.An anonymized version of the responses, along with our final FDA comment, will be shared on this page for transparency.No names, email addresses, or identifying information are collected. This project does not claim to produce scientific or representative data.
Participate
This survey is intended for individuals who have celiac disease, gluten intolerance, or gluten sensitivity, and for those who shop or cook for someone who does.The survey takes approximately 2-3 minutes to complete and is anonymous.