Founder and Executive Director
National Foundation for Celiac Awareness

By the time Alice Bast discovered she had celiac, she had suffered through the trauma of delivering a stillbirth, multiple miscarriages and a baby born at only 3 pounds. These years were also marked by debilitating physical symptoms and almost unbearable mental and emotional strain.

She had been told by 22 physicians that she “looked fine” -- with some actually suggesting she consult a psychiatrist. One fateful day, a helpful friend suggested she might have a food allergy.

Influenced by her friend’s suggestion, Bast consulted her 23rd physician, who finally diagnosed her as having a “rare” autoimmune disease called celiac sprue. Upon further research, she learned that undiagnosed and untreated celiac can lead to a host of other autoimmune diseases and can cause problems with fertility, repeated spontaneous abortions, amenorrhea and “intrauterine growth retardation.”

Bast also discovered that there is no known cure for celiac, and that research toward a cure was grossly under-funded by federal agencies and pharmaceutical companies. Without a medical and drug therapy treatment, the only way for Bast to manage her condition was to adhere to a strict and rather complicated gluten-free diet.

Her desire to spare other families from needless heartache and suffering compelled her to establish the National Foundation for Celiac Awareness in 2003. Under Bast’s direction, the fledgling foundation quickly spread its wings, participating in the first-ever National Institutes of Health (NIH)’s Consensus Development Conference on celiac.

Soon, Bast was invited to join an ad hoc committee formed by the NIH to increase awareness of celiac among the medical community.  Alice provided comments on an NIH celiac fact sheet and played a large role in the development of additional materials to better inform physicians, dieticians and the general healthcare community about celiac.

Bast was also principal investigator on an NIH-awarded grant to educate the public and the healthcare community about celiac through multi-media strategies. Under her direction, the NFCA will soon begin funding research to better understand celiac and one day find a cure -a central goal to the NFCA’s mission.  

Testifying twice in front of the U. S. Food and Drug Administration, Bast has fought for national standards in labeling foods as gluten-free to keep food safe for consumption by the celiac community. This new labeling is expected to be in place by January 2008.

On a daily basis, Bast shares her passion and her expertise with medical researchers, healthcare companies and federal agencies in an effort to achieve the NFCA’s goals of increased public awareness and, ultimately, a cure for celiac disease.

2006 will mark a new chapter for the NFCA with the launch of a national public awareness campaign, positioning the NFCA as one of the nation’s best resources for information for diagnosed and undiagnosed celiacs, their loved ones and their healthcare providers.