In early 2005, Shauna James Ahern was very ill. She required 18 hours of sleep a day, her stomach ached all the time, and she could barely move without severe pain. After many medical tests she was eventually diagnosed with celiac disease, an autoimmune disorder in which eating gluten can severely damage the lining of the small intestine.

Ahern eliminated wheat and gluten from her diet and now feels great. She runs a popular blog called Gluten-Free Girl where she talks about her gluten-free lifestyle and offers recipes and support.

“Food is the path to healing in celiac,” Ahern wrote in her blog. “There is no pill we can take, no surgery we can endure, and in fact, no cure other than living on an entirely gluten-free diet.”

May is now recognized as Celiac Awareness Month and the movement kicked off in Washington D.C.

The gluten-free food market is booming with sales expected to reach $2.6 billion next year, but all eyes are on the U.S. Food and Drug Administration’s lag to define gluten-free products and create a national labeling standard.

In 2007 the Food Allergen Labeling and Consumer Protection Act (FALCPA) tasked the FDA to finalize standards for gluten-free labeling. Four years later, the FDA has not fulfilled this mandate, which is a huge problem for the estimated 3 million Americans who have celiac disease and another 18 million American who are gluten sensitive.

“Right now, there are no standards for gluten free,” said Jules Shepard, co-organizer of the first Gluten Free Food Labeling Summit. “Consumers have no idea what gluten free really means. We are asking the FDA to pick a standard—not everyone may be happy with it—but at least we will have a standard.”

The labeling issue gained national attention in April 2011 when a North Carolina man was sentenced to 11 years in prison after he was found guilty of labeling regular breads as gluten-free under the name Great Specialty Products. Dozens of people became sick after eating the baked goods.

Shepard is a celiac patient and expert, who owns Jules Gluten Free, has authored three books on the subject and speaks nationally about gluten-free living. At the summit held on May 4, 2011, organizers built the world’s largest gluten-free and dairy-free cake standing more than 11 feet tall. The event gathered gluten-free community leaders, celiac disease researchers, food corporations and members of the FDA to discuss the issues.

“Part of establishing national standards is education,” Shepard said. “More consumers are entering this market every day. When they see the label, they should believe it's gluten free.”

To get involved with the movement and sign a petition for safer gluten-free labels, visit http://www.1in133.org.

Suzanne Boothby is a Brooklyn-based wellness writer, certified health coach and co-founder of New York Family Wellness. Visit www.suzanneboothby.com to learn more.

Gluten Free Girl

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Jules Gluten Free