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The most recent statistical estimates of the prevalence of celiac disease would mean that 300 people in Great Neck, based on a rounded off number of a population of 40,000, have the disease. That number is not too startling. What is most disconcerting is that 97 percent of those who have celiac disease are not diagnosed. That would translate to 291 people in Great Neck who are suffering from the disease and are either asymptomatic or misdiagnosed. The irony is that diagnosis may be as simple as "just one blood test" away and it is a treatable disease. Based on the national average, it takes 11 years for a person with celiac disease to be diagnosed from the time they become symptomatic. It is tantalizing to know that one person in 133 reading this article has the disease and probably does not know it.

Laura Leon

Laura Leon who considers herself "very lucky" to have finally been diagnosed with celiac disease is determined to do everything she can to bring more public awareness to this insidious disease and to raise money for research.

To this end, on Monday, May 23, Ms. Leon, a concert pianist, has gathered an impressive array of talented people to join her in performing at a gala concert at the Tilles Center to raise money for the Celiac Disease Center at Columbia University. The concert features the Grammy award winning saxophonist Richie Cannata; actor, writer and former member of STOMP! Peter Marino; the renowned contemporary dance artist Alan Danielson; actress and Tony nominated director Eleanor Reissa and the dazzling Schade Academy of Irish Dancing. Ms. Leon says, "I think it will be a wonderful evening of music and dance and a celebration of the fact that once diagnosed, celiac disease is treatable, just through modifying one's diet."

Celiac disease, although certainly not rare, is strangely unknown to the general population. It is an autoimmune disease that causes damage to the small intestine because of an individual's intolerance to gluten, a protein found in wheat, rye and barley. When a person with this condition eats foods containing gluten, his or her immune system responds by destroying the tiny villi in the lining of the small intestine, causing malnourishment, regardless of how much food is eaten. Making diagnosis more elusive, the symptoms of the disease may vary widely in individuals and may mimic the symptoms of other diseases of the digestive system, such as Irritable Bowel Syndrome, Crohn's disease, or ulcerative colitis, resulting in delays in diagnosis and more damage to the villi. Because nutriments are not absorbed into the body, untreated celiac disease actually causes osteoporosis, anemia, thyroid disease, rheumatoid arthritis, unexplained skin rashes or infertility. The latest research shows that celiac disease may also be responsible for type 1 diabetes and neurological complications including seizures. Undiagnosed celiac disease can result in an increased risk of certain types of cancers and other autoimmune diseases. In children, celiac disease can result in failure to thrive, short stature or developmental delays.

People who do not have symptoms have undamaged portions of the small intestines that allow absorption; however, they are still at risk for the complications of the disease.

Ms. Leon feels a sense of urgency about getting the word out about celiac disease because she knows, all too well, that since it runs in families, one diagnosis can lead to others. When Ms. Leon learned that she had the disease, she had her three children tested and her daughter Susan, "the one I least expected" tested positive although at the time she showed no symptoms. It turned out that Ms. Leon's mother and sister have celiac disease as well and so, one diagnosis led to three other people beginning a path to better health.

Columbia's Celiac Center is according to Ms. Leon, "an incredible resource to anyone with this disease." The staff recognizes that the transition to a gluten free diet may be difficult at first and that is why they offer support groups and expert advice from dietitians. She is also full of praise for the director of the center, Dr. Peter Green, who she says is not only a world-wide authority on celiac disease, but is also a compassionate physician who treats his patients as people.

Up until a few years ago, gluten-free products were not readily available in major markets, food labeling was not as clear and thorough as it is today, and maintaining a gluten-free diet was much more challenging. A person learning to change to a gluten free diet can benefit from the experiences of others because gluten products are widely used as fillers and thickeners in processed foods. Things have improved and continue to get better. Grocery stores such as Whole Foods and Fairway stock many gluten-free products. Ms. Leon says, "Once you get the hang of it, you don't feel deprived, because there are so many delicious alternatives."

The concert invitation, a whimsical motif drawn by Ms. Leon's sister Karen Leon, a cartoonist and illustrator, is entitled "Spring Forward for Celiac." It is fitting that the design and the theme signify hopefulness.

Ms. Leon, a woman whose delicate beauty belies her strength, lost her husband, Marc, almost a year ago after his gallant fight with a debilitating illness. I arrived at her home for our interview a few minutes early and stood at her door before knocking, listening to her play the piano aware of how much she and her family have been through this past year. One could hear the paradoxical lightness and power of her touch at the keyboard and know that Laura Leon will use all of her talents to reach out to help others grapple with and defeat this disease.

For additional information about the benefit, please call 516-244-7334.

For more information about the Celiac Disease Center at Columbia University you may visit www.celiacdiseasecenter.columbia.edu or phone 212-342-4529.


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