A Legislative Milestone: The Celiac Safety Act and the Future of Food Labeling in America

For the nearly three million Americans living with celiac disease—a serious, life-altering autoimmune condition—the simple act of grocery shopping is often a high-stakes, stressful endeavor. While current federal law mandates that wheat be identified as a major allergen, the other primary sources of gluten—barley and rye—remain in a regulatory gray area.

That landscape shifted significantly on May 28, 2026, when Representatives Emanuel Cleaver (D-MO) and Betty McCollum (D-MN) introduced the Celiac Safety Act (H.R. 9048) in the U.S. House of Representatives. This landmark bill represents the culmination of two decades of advocacy by the Celiac Disease Foundation (CDF) and seeks to align the United States with global health standards, potentially transforming the lives of millions of patients who currently navigate a fragmented and often dangerous food supply chain.

The Core Provisions: Closing the Gluten Gap

At its heart, the Celiac Safety Act is a transparency measure. Under existing U.S. Food and Drug Administration (FDA) regulations, manufacturers are required to disclose the presence of "major food allergens" on product labels. Currently, this list includes wheat but excludes other grains that are equally toxic to those with celiac disease, namely barley and rye.

If passed, H.R. 9048 would mandate that all gluten-containing grains be reclassified and labeled as major allergens. This would require manufacturers to clearly declare the presence of barley, rye, and their derivatives in plain, unambiguous language on ingredient lists. For the celiac community, this is not merely a matter of convenience; it is a critical safety intervention. When a consumer with celiac disease inadvertently consumes even trace amounts of gluten, it triggers an immune response that attacks the lining of the small intestine, leading to malabsorption, chronic pain, and long-term systemic health complications.

A Chronology of Advocacy: From NIH to Capitol Hill

The legislative momentum behind the Celiac Safety Act did not emerge in a vacuum. Its origins trace back to the landmark 2004 NIH Consensus Development Conference on Celiac Disease. That event was the first of its kind to establish a formal framework for diagnosing and managing the condition in the United States, effectively shifting the medical community’s perception of celiac disease from a rare, childhood malady to a widespread, chronic condition that necessitates rigorous dietary vigilance.

For the subsequent twenty years, the Celiac Disease Foundation has served as the primary catalyst for change. Their advocacy has been a multi-pronged effort, involving:

• 2004–2015: Developing the clinical and patient-centered framework necessary to gain recognition from federal health agencies.
• 2016–2024: Building a coalition of gastroenterologists, research scientists, and patient advocates to demonstrate the economic and health-related burden of current labeling practices.
• 2025: Engaging directly with the office of Representative Emanuel Cleaver to draft the specific legislative language for the Celiac Safety Act, ensuring that the bill was grounded in both clinical necessity and regulatory feasibility.
• May 2026: The formal introduction of H.R. 9048, supported by Representative Betty McCollum, who serves as co-chair of the House Celiac Disease Caucus.

Global Context: Why the U.S. is Lagging Behind

The United States currently occupies a lonely position on the global stage regarding gluten labeling. While the U.S. prides itself on a robust food safety regulatory environment, it has failed to mirror the standards set by its international peers.

Australia, New Zealand, Canada, the United Kingdom, and all 27 member states of the European Union have long recognized the necessity of labeling all gluten-containing grains. In these jurisdictions, manufacturers are held to higher standards of transparency, acknowledging that for individuals with celiac disease, barley and rye are just as dangerous as wheat. By failing to adopt these standards, the U.S. has effectively left its citizens with celiac disease at a higher risk of accidental exposure compared to their counterparts abroad. The passage of the Celiac Safety Act would finally close this "regulatory gap," bringing the United States in line with established international best practices.

Synergistic Efforts: The International Front

The push for the Celiac Safety Act is not an isolated effort. It is part of a broader, dual-track strategy pursued by the Celiac Disease Foundation. Earlier in May 2026, the Foundation played a pivotal role in the Codex Committee on Food Labelling, the international body responsible for setting global food standards.

In that forum, the Foundation helped advance landmark international guidelines that, for the first time, establish a science-based "reference dose" for gluten in precautionary allergen labeling. Because domestic regulations are often heavily influenced by these international benchmarks, the Foundation’s work at the Codex level provides the scientific justification needed to bolster the case for the Celiac Safety Act in Congress. By working on both the domestic legislative front and the international regulatory stage, the Foundation is creating a "pincer movement" designed to ensure that celiac patients have the protections they need, regardless of where their food is produced.

Official Responses and Expert Endorsements

The introduction of the bill has been met with broad support from the medical and patient-advocacy communities. Marilyn G. Geller, CEO of the Celiac Disease Foundation, underscored the urgency of the moment in a formal statement:

"Gluten-containing grains trigger a serious autoimmune response in celiac disease patients, yet current labeling laws fail to recognize that risk with the same clarity afforded to other ingredients listed as major allergens. Recategorizing gluten-containing grains as a major food allergen would strengthen transparency, reduce preventable medical harm, and help millions of Americans make safe food choices with confidence."

The legislation has also garnered official endorsements from the American Gastroenterological Association (AGA) and the Society for the Study of Celiac Disease (SSCD). These professional bodies have long advocated for better patient safety and are viewing the bill as a vital step in reducing the healthcare burden associated with the complications of celiac disease.

Implications for Public Health and the Economy

The implications of the Celiac Safety Act extend far beyond the supermarket shelf. By standardizing labeling, the bill aims to:

1. Reduce Medical Complications: Clearer labeling will directly result in fewer cases of "glutening," thereby reducing the incidence of acute symptoms and the long-term risk of associated conditions such as osteoporosis, iron-deficiency anemia, and even certain types of intestinal cancers.
2. Ease the Mental Health Burden: The "hyper-vigilance" required by celiac patients—constantly scanning complex ingredient lists—is a significant contributor to anxiety and social isolation. Mandatory labeling will act as a "cognitive relief" mechanism, allowing patients to participate more fully in social and economic life.
3. Standardize Regulatory Compliance: Food manufacturers currently face a fragmented landscape. Harmonizing U.S. law with international standards will simplify compliance for food companies that operate in multiple global markets, potentially lowering the costs of product labeling and supply chain management over the long term.

The Path Forward: How the Public Can Help

The Celiac Safety Act is not yet law. Its progress through the House and Senate will depend entirely on the level of public engagement and the political will of the legislative body.

Advocacy groups are currently encouraging citizens to contact their representatives to urge them to co-sponsor H.R. 9048. Because the bill represents a bipartisan effort between Representative Cleaver and Representative McCollum, there is a strong foundation for movement, but the process is notoriously difficult in a polarized Congress.

The message to lawmakers is clear: this is a common-sense safety issue that protects a vulnerable population without imposing an undue burden on the food industry. As the Celiac Disease Foundation notes, the process of reaching out to a representative takes less than a minute, but the cumulative effect of thousands of constituents demanding action is what turns a bill into a law.

Conclusion

The introduction of the Celiac Safety Act represents more than just a minor tweak to labeling regulations. It signifies a long-overdue societal acknowledgment of the gravity of celiac disease. By mandating that barley and rye be treated with the same regulatory seriousness as wheat, the United States has the opportunity to protect its citizens, streamline its food safety policies, and finally join the global community in providing a safe, transparent, and inclusive marketplace.

For the three million Americans living with the daily challenges of celiac disease, the passage of this bill would be a transformative victory—a testament to what happens when scientific expertise, sustained advocacy, and legislative leadership converge. As the bill moves through committee, the eyes of the patient community remain firmly fixed on Capitol Hill, waiting for a change that is not only necessary but long overdue.