Every child reaches a point where they realize adults don't have all the answers. For 11-year-old Jax Bari, this realization came too early. Jax suffers from Celiac Disease, a life-threatening and debilitating condition that affects 3.3 million Americans. Gluten, found in wheat, barley, rye, and most oats, triggers this disease.

Impact of Celiac Disease

When those with Celiac ingest gluten, even a small crumb, it can cause severe illness and interfere with basic life activities like eating, sleeping, thinking, learning, and working. It makes it difficult for them to eat out safely and participate in food-related social activities due to the high risk of accidental gluten ingestion through cross-contamination. Celiac also limits career choices and military service. In the long term, it increases the risk of various health problems such as anemia, cancer, heart disease, immunological scarring, intestinal damage, malnutrition, and other autoimmune diseases. Unlike other food allergies, there is no rescue medication. Jax will have to manage this for the rest of his life as it cannot be outgrown.

Advocating for Gluten Labeling

Since 2006, only wheat has been required to be labeled in the US. But Jax, through a Citizen Petition submitted by Celiac Journey founded by his family, is pushing the FDA to require gluten labeling on all packaged foods. This can be done using the FDA's existing authority. However, explaining the regulatory process to an 11-year-old is challenging as it is slow and lacks logic.At a meeting with FDA Deputy Commissioner Jim Jones, Jax passionately shared his lived experience and the scientific support from the World Health Organization and the Food and Agriculture Organization. He wore his favorite football player's jersey, symbolizing the 87 countries that consider gluten a priority allergen.

Challenges and Oppositions

At the HHS Food is Medicine Summit, FDA Commissioner Califf responded that there are people on both sides of requiring gluten labeling. Explaining how FDA institutional culture can work against such a proposal and how the comment periods, proposed rules, final rules, and bureaucracy can delay the process is difficult for Jax. He wonders who is really against helping Celiac sufferers.Jax is learning that food policies sometimes prioritize industry profits over public health. This food safety education is accelerating his maturation process. But it also motivates him to use his voice.

FDA's Role and Opportunity

Jax's Citizen Petition presents an opportunity for the FDA's Human Foods Program under Deputy Commissioner Jones to lead by example and break away from the Reagan-Udall Foundation's findings. The FDA needs to restore Jax's faith in adults and the food regulatory system. It should act quickly to help Celiac sufferers who shouldn't have to wait years for a rulemaking process. It's time for the agency to stand up and declare that it is committed to public health.About the author: Brian Ronholm is the Director of Food Policy for Consumer Reports. He has extensive experience in food safety and has served in key positions.(To sign up for a free subscription to Food Safety News, click here)