February 10th, 2013, was the tenth anniversary of the publication of the prevalence study led by Alessio Fasano, MD, revealing the high incidence of celiac disease in the United States. Until the multicenter study was published by the University of Maryland, indicating that celiac disease affects one in 133 Americans, the condition was thought to be quite rare, affecting one in 10,000.
Congress Passes Key Labeling Legislation in 2004
A great deal has changed in 10 years. In that decade, the U.S. Congress passed the Food Allergen Labeling and Consumer Protection Act of 2004, which vastly improved food labeling. Wheat, the primary source of gluten in manufactured products, can no longer be a hidden ingredient and has to be labeled in plain language.
The National Institutes of Health Launch Awareness Campaign in 2006
The National Institutes of Health convened a Consensus Development Conference on Celiac Disease in 2004, using the new prevalence data, offering guidelines to the medical community and identifying directions for research. The NIH officially launched a Celiac Disease Awareness Campaign in 2006, providing materials and resources for health care professionals and the public.
Studies Multiply, Awareness Rises
Countless other studies from around the world improved our collective knowledge of celiac disease. University medical centers in the United Sates invested in clinical care and research. Awareness of celiac disease increased and diagnostic rates inched up from shockingly low levels below five percent. Non-celiac gluten sensitivity gained attention and new acceptance, and researchers have begun searching for a biomarker that could be used to create a blood test for diagnosis.
Gluten-Free Fad Drives Retail Market
As gluten became the new dietary villain in a popular trend in the general population, the quantity of gluten-free packaged foods and beverages soared to fuel a $4.2 billion market. As quantity increased, variety, quality and accessibility rose to make it much easier and tastier to follow a gluten-free diet, including for those for whom it is a medical necessity not a lifestyle choice.
Department of Justice Becomes an Ally in 2012
Most recently, the Department of Justice signaled that celiac disease may be considered a disability under the Americans With Disabilities Act and eligible for accommodation. The settlement between the DOJ and Lesley University may have far-reaching implications.
Still Waiting: FDA’s Gluten-Free Labeling Rule
It’s been a decade of progress in policy, the food industry, and science and medicine. What’s missing? Something absolutely essential to this picture of advancement in celiac disease and gluten sensitivity: a federal standard for labeling gluten-free foods. Four and a half years past the deadline set by the Food Allergen Labeling and Consumer Protection Act, which tasked the the Department of Health and Human Services with publishing a gluten-free labeling rule, Americans with celiac disease still cannot determine whether a product labeled “gluten-free” is safe to eat; that is, whether it contains non-wheat sources of gluten and whether it is free of cross-contact with gluten. The Food and Drug Administration’s proposed rule has not been finalized yet.
White House Petition in 2012
Over 36,000 people have signed a petition asking the government to finalize the gluten-free labeling rule. The Obama administration promises to respond to the petition, which met the threshold and deadline for the White House petition process early last November in the midst of the twin meteorological and political storms of Hurricane Sandy and a presidential election.
A Time to Act
The February 2013 anniversary of the celiac disease prevalence study is a meaningful opportunity for the federal government to finalize the gluten-free labeling rule, a goal for which countless individuals, food manufacturers, nonprofit organizations, medical professionals and scientists, including Dr. Alessio Fasano, have worked tirelessly since the landmark study ten years ago.
