RODALE NEWS, EMMAUS, PA—People suffering from celiac disease and other forms of gluten intolerance are fed up with the U.S. Food and Drug Administration (FDA). So last Wednesday, they took to the streets of Washington with the world's largest gluten-free cake demanding that the agency stop dragging its feet on defining what it means for a food to be truly gluten free.
The Gluten-Free Labeling Summit, where the big cake was headed, convened food-industry representatives and researchers from leading health institutions together with FDA representatives and members of Congress. At issue was the fact that, despite a mandate from Congress in 2003, the FDA has yet to come up with laws regulating the use of the label "gluten free" on foods. "We don't understand why this is taking so long, when the European Union and countries that are arguably less developed in terms of their food regulations already have effective gluten-free labeling laws," says Jules Shepard, owner of a gluten-free baking company and cofounder of the advocacy group 1in133.org (that's the suspected prevalence of celiac disease, a form of gluten intolerance, in the population), which organized the summit.
THE DETAILS: Like other claims on some food labels—"natural," "antibiotic-free," and "free-range"—"gluten-free" doesn't really mean anything, even though, according to law, the FDA was supposed to come up with a definition as far back as 2006, and with standards for gluten-free labeling by 2008. So consumers have no way of knowing whether a "gluten-free" product truly contains no gluten. Some gluten-free products may indeed be free of wheat gluten, but not of rye or barley gluten, says Pam King, director of operations and development at the Center for Celiac Research at the University of Maryland. "And honestly, there is no such thing as zero gluten because of cross-contamination," she adds. Her group, along with the others who sponsored the summit, is pushing for a limit of 20 parts per million of all types of gluten in products labeled gluten free. That's the limit used in international gluten-free labeling laws. and a level that most physicians agree is tolerable for people who can't tolerate gluten.
WHAT IT MEANS: The lack of concrete labeling laws could put an ever-increasing number of Americans at risk. A recent study suggests that as many as 18 million Americans suffer from gluten sensitivity, a condition in which people react negatively to wheat, rye, or barley gluten but never test positive for the more serious celiac disease. It's estimated that about 3 million total suffer from celiac, an autoimmune disorder that results in diarrhea, fatigue, nerve damage, rashes, or anemia (among other symptoms) after eating gluten from those same food sources. A separate condition, wheat allergy, is affecting a growing number of children. Although exact statistics on the prevalence of allergy to wheat aren't available, wheat is considered one of the eight allergenic foods, alongside dairy, eggs, tree nuts, fish, shellfish, soybeans, and peanuts, that account for 90 percent of food allergies in this country.