by Joel Hoffman, The Chestnut Hill Local
When Alice Bast scans the nutrition label on a loaf of bread, she skims past the calories, carbs and fats, searching for a single ingredient. She knows the benefits of a balanced diet, but most nutrients are of secondary concern to her. No matter how wholesome or delicious the food is, Alice can't have it if it's made with gluten. Even a few bites could leave her bedridden.
For most of her life, Alice ate breads, pastas and other foods with gluten. The microscopic molecule was telling her body to self-destruct, but she didn't feel the consequences until she was 29. Clueless to what was consuming her, Alice suffered through migraines, wrenching abdominal pain and three miscarriages for the next seven years.
Alice knows better now. She knows better than the 22 doctors who misdiagnosed her that she has celiac sprue, the only auto-immune disease with a known trigger: gluten.
A common protein, gluten is found in countless over-the-counter and prescription medications, wheat, barley and rye products and even lipstick. When celiac disease is present, the body's immune system attacks gluten molecules and destroys the lining of the small intestine, which makes it difficult for nutrients to seep through the small intestine and into the rest of the body.
Celiac disease is more prevalent than it seems. The statistics are unsettling. One of every 133 people in this country has celiac disease, but that figure is based on confirmed cases. Many more people don't know they have it because misdiagnosis was common until Alice began to share her story. The National Foundation for Celiac Awareness estimates that 97 percent of people with celiac are undiagnosed or misdiagnosed; on average, they wait nine years to learn the truth.
Alice knows that there is no cure, but she can keep the disease at bay if she carefully plans her diet. She knows that it is her mission to inform the public about a disease that afflicts over two million Americans — and countless others who have been told they are suffering from Crohn's disease or anemia or some vague list of psychosomatic symptoms. Fortunately, she's had plenty of help along the way.
In 2003, she started the National Foundation for Celiac Awareness with a $100,000 grant from the National Institutes of Health and funds from private donors. She organized a medical advisory board and an army of volunteers, set up her base of operation in Ambler, not far from her home in Flourtown, and began to educate food and drug manufacturers, government officials and citizens about celiac disease and gluten-free living.
"Alice is working with local and major food companies to make gluten-free products available to everybody," says Dorothy Binswanger, NFCA president, Chestnut Hill resident and Alice's long-time friend.
"It's not just rich people who have celiac," she says. "A huge market is opening up."
Research by Spins Inc., a market research firm specializing in natural products, shows that the gluten-free market grows 15 percent each year. Gluten-free foods are beginning to flourish. To name a few, gluten-free breads, condiments, candy and soups line the specialty shelves at Trader Joe's and Whole Foods.
As celiac awareness rises, says Alice, so will the number of diagnoses. The NFCA estimates 500,000 new diagnoses in the next five years.
Grocery stores large and small are stocking their shelves accordingly. John Ingersoll, co-owner of the Chestnut Hill Cheese Shop, says that the response to his new inventory has convinced him to offer a greater variety of gluten-free goods. He expects other food manufacturers and vendors to follow suit. That is exactly what they are doing.
In December, Anheuser-Busch became the first major company to brew a gluten-free beer. Working closely with Alice Bast, Anheuser-Busch proved the market's commitment to making gluten-free alternatives to staple American foods and drinks. The introduction of Redbridge beer echoed the success of the NFCA's educational campaign, which Alice continues to fine-tune through private meetings and public events like the Gluten-Free Cooking Spree.
In partnership with the NFCA, Drexel University hosted the first Gluten-Free Cooking Spree in April of 2006. Doctors and student chefs paired up to prepare the best gluten-free dish.
"The food was fabulous for those with celiac disease and their supporters and friends," says Dr. Marla Gold, dean of the Drexel University School of Public Health and a member of the NFCA Scientific Advisory Board (and another Chestnut Hill resident).
"The event achieves many things in its design," she says. "It teaches clinicians about what people with celiac disease may encounter when trying to make a meal or when they eat out in restaurants."
Eating at restaurants is a problem because of cross-contamination, says Lucie Daigle, an NFCA volunteer, registered nurse and Flourtown resident. "You can't make gluten-free pizza on a board that has wheat flour on it."
The Gluten-Free Cooking Spree allows her and other NFCA representatives to teach chefs about the necessity of preparing gluten-free foods in a separate prep area and keeping their grills and deep fryers clean.
Innovation is another benefit of the Gluten-Free Cooking Spree. Many of the chefs Alice has worked with assumed that by eschewing wheat flour they were doomed to bland food.
"The chefs were surprised to learn that the dishes can be delicious with a little ingenuity," Alice says. "You don't have to sacrifice taste for a gluten-free diet. Garbanzo bean, rice and tapioca flours are healthy, good-tasting alternatives."
The inaugural event was so successful that the NFCA board organized more of them for this year. Cook-offs in New York City and Washington, D.C. sold out quickly and bolstered celiac awareness. Lucie Daigle and Dorothy Binswanger hope to match that success with their Gluten-Free Cooking Spree at the Penn's Landing Hyatt.
From 7 to 10 p.m. on Saturday, June 23, 10 teams will compete to make the best gluten-free food. Each team will feature a doctor, a local reporter and one of Philadelphia's best chefs. A three-person panel, comprised of a food critic, a celiac specialist and a child with the disease, will taste each dish and declare a winner.
Heidi Collins, a news anchor for CNN who has celiac disease, will host the event, which is open to the public. General admission is $50. Students and children under 12 can buy tickets for $35. Attendants can sample gluten-free appetizers and desserts, as well as beer and wine with valid ID. VIP admission is $100 and includes an autographed copy of Vanessa Maltin's book Beyond Rice Cakes. VIP guests will also get to meet the doctors and chefs taking part in the event.
Dr. Edward Jones, an internal medicine specialist at Chestnut Hill Hospital, decided to participate after his daughter was diagnosed with celiac disease. "I think this event will raise awareness about a disease that is very common around the world," he says. Dr. Jones hopes that the event will help us catch up to Europe with research and diagnosis.
Dr. Marla Gold agrees. "It's a common disease and can be diagnosed if a clinician and/or patient consider it at the start. It's also completely treatable with a gluten-free diet. The diet can breathe a full life back into folks with the disease."
For more information about the Gluten-Free Cooking Spree and celiac disease, visit the National Foundation for Celiac Awareness Web site at www.beyondceliac.org or call 215-233-9248.
by Joel Hoffman, The Chestnut Hill Local
Printed with permission of The Chestnut Hill Local