By Kim O'Donnel
Special to The Washington Post
Wednesday, August 8, 2007
When Jules E.D. Shepard learned in 1999 that she had celiac disease, the diagnosis didn't come with much guidance about the crucial challenge: how to avoid gluten in even the smallest amounts. And supermarket shelves and cookbook aisles were of little help.
"Mostly I ate rice, grilled seafood, fruits and veggies -- and Kellogg's Corn Pops cereal," says Shepard, 36, who lives in Catonsville, Md. "Nothing was labeled 'gluten free.' I had to read labels vigilantly."
In the eight years since, Shepard's quest to develop gluten-free strategies and products, particularly ones that satisfy her yen for baking, has paralleled the increase in known cases of the disease and in the market for products related to it. Celiac disease has been diagnosed in an estimated one in 100 Americans, and retail sales of gluten-free products reached $700 million last year.
With her gluten-free baking mix on store shelves, one self-published cookbook under her belt and the phone ringing off the wall for consulting work, Shepard finds herself at the center of a full-fledged movement.
It has been a long road, though, starting with her long-delayed diagnosis in 1999, when she learned that the reason she couldn't eat her morning bagel or pasta dinner without wanting to curl up and die was celiac disease, which was relatively unheard of at the time. Celiacs cannot properly digest gluten, the protein found in wheat, barley, spelt and rye that helps yeast breads rise, makes a bagel chewy and keeps a cookie from turning into a flat brick. In celiacs, gluten triggers an autoimmune response whose effects include gastrointestinal distress, chronic fatigue, anemia, osteoporosis, depression and even a heightened risk of intestinal cancer. Unlike gluten intolerance or allergies, celiac disease is a lifelong condition. The only treatment is diet.
If gluten is completely avoided, "you can lead a healthy, full life," says Alessio Fasano, founder of the Center for Celiac Research at the University of Maryland in Baltimore.
It didn't take long for Shepard to realize just how entrenched gluten is in the American diet -- from the high-end pasta palace to the office vending machine -- but the tricky part was spotting it in less obvious places: soy sauce, canned soups, ketchup and even some toothpaste.
By 2003, when a diagnostic blood test became publicly available, Shepard's path started to feel less lonely. With more awareness and diagnoses, a niche market has turned into a burgeoning industry. Besides turning up in grocery stores, gluten-free items have started appearing on restaurant menus: in pizzerias and bakeries in New York City and elsewhere, and in the Legal Sea Foods chain, among others.
According to a study last year by MarketResearch.com, U.S. retail sales of gluten-free products have been growing at an annual rate of 27 percent since 2001. By 2010, gluten-free products are predicted to be a $1.7 billion industry, says MarketResearch.com's Larry Finkel.
The market of users also is expected to keep growing. "For every celiac diagnosed there are an average of 50 others that have not been diagnosed yet," says Fasano, who had a key role in the study that paved the way for the blood test. By the next generation, he says, there could be one diagnosed celiac among every 50 people, or 6 million Americans seeking a gluten-free diet, as the diagnoses catch up with the celiac population.
For Shepard, who learned to bake from her mother and "Wilton cake decorator" grandmother in North Carolina, tracking down gluten-free products was one thing, but a baking life without wheat flour just didn't seem right. At the time of her diagnosis, she was about to marry a guy who had a thing for cherry pie, so the pressure was on to find ways to have her cake and digest it, too.
"I tried so many gluten-free recipes, and all of them were horrible," she says.
Take scones, which she started tinkering with in 2000. "Every [gluten-free] scone recipe I found contained a high proportion of white rice flour, which resulted in a dry, crumbly scone with a weird aftertaste," she says. "I was determined to get it right."
Shepard's breakthrough was in nailing down a mix of five grains and starches to approximate the properties of wheat flour. To the gritty white rice flour she added mild tapioca starch, then potato starch and cornstarch, and "I finally got the softer consistency I had envisioned," she said. To mimic wheat-like bulk, she ultimately added corn flour.
With those ingredients plus xanthan gum as a binder, Shepard could make not just scones but pizza crust, chocolate chip cookies, graham crackers and sugar cookies, all of them decent approximations of their wheat-flour equivalents.
Now available at Roots Market, a health-minded specialty grocer with stores in Clarksville and Olney ( http://www.rootsmkt.com), Shepard's flour mix joins the ranks of several other gluten-free lines by such companies as Bob's Red Mill Natural Foods, Ener-G Foods and Pamela's Products.
Even with the flour's moneymaking potential, perfecting it was a personal mission, not business, Shepard says. "With the flour mix, I was able to reclaim my baking life, the baking part of me."
By late 2003, Shepard was cooking 100 percent gluten-free, baking daily for her two kids (ages 5 1/2 and 2) and her pie-loving husband. Last fall she self-published "Nearly Normal Cooking for Gluten-Free Eating," a cookbook with more than 100 recipes. Her book joins others such as Carol Fenster's just-released "Gluten-Free Quick & Easy" (Avery, 2007), Annalise G. Roberts's "Gluten-Free Baking Classics" (Surrey Books, 2006) and Vanessa L. Maltin's "Beyond Rice Cakes" (iUniverse, 2006).
These days, she is spreading the gluten-free gospel. Since spring, Shepard has been teaching monthly gluten-free cooking classes at Roots Market and most recently has been the resident gluten-free baker at Roots' sister vegetarian restaurant, Great Sage, also in Clarksville. The response, she says, has been amazing: "I know what they [celiacs] are going through, and now finally there's someone -- me -- to help them enjoy eating again."
She even has a possible book deal on the horizon. But she won't be satisfied until she re-creates all of her beloved pre-celiac favorites: "I would love to come up with a recipe for a gluten-free saltine."
For more links and resources, see Kim O'Donnel's blog, A Mighty Appetite, at http://www.washingtonpost.com/food.