A mere decade ago, celiac disease -- an autoimmune disorder that makes it impossible for an individual to consume gluten, which is found in wheat -- was only just beginning to be understood.
In fact, it wasn't even recognized as a disease at all.
The good news is that today, celiac disease is widely recognized by the federal government and consumers alike for what it is: a chronic condition that affects millions of Americans. For them, eating a gluten-free diet is a matter of medical necessity.
But there's more to do. As a legislator and medical researcher, we both believe it's time for the federal government to finally set clear standards for the regulation of gluten-free labeling. This would cut down on the growing, unregulated market for gluten-free products and be an important step forward in giving the millions of Americans with celiac disease the tools they need to manage their health.
The reason gluten-free labeling is so important is that just as a diabetic must take insulin to survive, a person with celiac disease must follow a gluten-free diet in order to remain healthy. These people must be able to trust food labels and know that when a food is labeled "gluten-free," it really is gluten-free.
Raising awareness of gluten-related disorders like celiac has been an uphill battle. Originally thought to be an extremely rare condition found mainly in Caucasian children, celiac wasn't even recognized by the National Institutes of Health as a disease. But that began to change in 2003, when the Center for Celiac Research released an article in the Annals of Internal Medicine showing celiac disease affected one in 133 Americans.
Slowly, a coalition of medical experts, legislators and consumer advocates began to recognize the need to protect consumers with food allergies -- including celiac disease -- by improving food labeling. In 2004, Congress passed legislation requiring the labeling of the eight most common food allergens, including wheat, the most common source of gluten found in food. Passed with bipartisan support, the Food Allergen Labeling and Consumer Protection Act was a critical step forward in helping individuals with food allergies and celiac disease manage their day-to-day health.
Now, nearly a decade since this landmark law was passed, the standards for what constitutes a gluten-free product have entered the final stage of review. In the interim, patients are still subject to an unsafe and unregulated market for gluten-free products that is growing at an exponential rate. Until there are proper food labeling regulations for gluten-free products, people with celiac disease are at the mercy of unregulated food manufacturers to set the exposure level to gluten. This is like allowing a stranger to determine the insulin dose that a person with diabetes receives without knowing anything about their individual needs.
Just as new drugs are helping to treat cancer, 10 years of research into celiac disease is helping to improve the lives of millions of Americans who suffer from this chronic disease. Now it's time to make sure our country's regulations reflect the science and make sure we do everything we can to give the millions of Americans with celiac disease the tools they need to lead a healthy life.
Congresswoman Nita Lowey represents New York's 17th District. She is the original author of the Food Allergen Labeling and Consumer Protection Act.
Dr. Alessio Fasano is the Director of the Center for Celiac Research at MassGeneral Hospital for Children.
For more by Rep. Nita Lowey, click here.
For more by Alessio Fasano, M.D., click here.
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