by Nathan Lerner
Did you know that an estimated three million Americans suffer from celiac disease? Those afflicted with the disorder cannot tolerate gluten, a common protein that 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.
Lamentably, despite the prevalence of celiac disease, the syndrome often goes undiagnosed. Alice Bast, 52, a Fort Washington resident who previously resided in both Chestnut Hill and Flourtown, is the founder and president of the Ambler-based National Foundation for Celiac Awareness (NFCA).
Like most other people, Alice ate breads, pastas and other foods with gluten for much of her life. 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, a full-term stillbirth, multiple miscarriages, weight loss, hair loss and a number of other symptoms over 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. She described the challenges in raising awareness about the disease: “There is no cure or drug treatment for celiac disease, so we haven’t had the support from the pharmaceutical industry that typically drives awareness of other conditions.”
In 2003, Bast started the NFCA 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 then-home in Flourtown, and began to educate food and drug manufacturers, government officials and citizens about celiac disease and gluten-free living.
Bast reflected, “Finally getting diagnosed with celiac disease changed my life completely. It gave me the chance to restore my health and reclaim my life by adopting a gluten-free diet. It also gave me a new passion and calling.
“Since I started NFCA, the undiagnosed rate has dropped from 97 percent to 83 percent. We now not only focus on diagnosis, but we also listen to our community and work to improve the quality of life so that people can live full and healthy lives after diagnosis. We provide a voice for our community, and we work directly with the health care and food industries so that voice is heard.”
To mark the milestone of their 10th anniversary, the NFCA hosted an event on Oct. 10 at Arts Ballroom, 1324 Locust St., at which it honored 10 individuals. Bast elaborated, “Our 10th anniversary comes at a time when everyone is talking about gluten-free food, but not everyone knows that it is tied to celiac disease. We hope that this event will help the public make that connection and want to learn more about celiac disease. With many people still undiagnosed, there is plenty of opportunity to get that message out there to people who have celiac disease but don’t know it.”
Dorothy Binswanger, Chestnut Hill resident, Alice’s long-time friend and one of the 10 people honored at the 10th anniversary event, told us in an earlier story about NFCA, “Alice is working with local and major food companies to make gluten-free products available to everybody. It’s not just rich people who have celiac. A huge market is opening up.”
STARR Events, Stephen Starr’s catering operation, catered NFCA’s 10th Anniversary Celebration. Bast noted, “A number of STARR chefs have participated in our public events over the years and have been trained in gluten-free safety through our GREAT Kitchens program. The 10th Anniversary Celebration featured an all-gluten-free menu.”
Bast acknowledged the challenges of mounting the 10th Anniversary Celebration. “Whenever you plan a big event like this, you still have to take care of the day-to-day tasks and other long-term projects that advance the organization’s mission. You can’t put everything on hold for a few months while you plan the event. With a staff of only 11, that’s a big undertaking.
“As a nonprofit, we also work with a limited event budget. Ninety-one percent of our funds go directly to our programs. We take great pride in that and are able to maintain that number by minimizing the costs of our events.
“The best part of the 10th Anniversary Celebration was bringing so many people together to celebrate all that we have accomplished. It’s our chance to stop and look at the way things were 10 years ago versus how things are now and know that NFCA played a direct role in driving that movement.”
For more information about NFCA, visit www.celiaccentral.org.
Nathan Lerner is the director of Davenport Communications. He welcomes feedback at email@example.com.