Colin Leslie, a 14-year-old from Rye, is a teenager on a mission — to educate as many people as he can about the harmful effects of celiac disease, a rare autoimmune disorder that he was diagnosed with last year.
Affecting 1 in 133 people, celiac disease is more common than Type I diabetes, yet it sometimes takes more than a decade to diagnose. In fact, Colin says, when he first became sick, doctors did not consider celiac. “I went to many different specialists trying to figure out what was causing the headaches and migraines I had 24 hours a day, every day of the week, and the joint pains that later developed,” he says. “I had more tests than I can remember, including CT scans, spinal tap, MRI, EEG, and massive amounts of blood taken, but what complicated my diagnosis even more was that I did not experience the typical symptoms of the disease, which tend to be digestive problems.”
According to the Celiac Disease Center at Columbia University, the primary cause of celiac is attributed to gluten, a protein found in wheat, rye, and barley that triggers the patient’s immune system to attack a portion of the small intestine. While it can take an average of 11 years before a patient with celiac is correctly diagnosed, if left untreated, celiac disease can potentially lead to a variety of serious ailments including Type 1 diabetes, osteoporosis, infertility, rheumatoid arthritis, liver disease, lupus and even cancer.
The primary treatment for celiac disease is a gluten-free diet. Immediately after he was diagnosed, Colin says his mom scoured the Internet, searching for foods he would be able to incorporate into his daily routine. While Colin admits being disappointed when he first learned he had to radically change his eating habits, he’s managed to adjust and the results have been positive. He no longer suffers from excruciating joint pain, and while he still isn’t able to participate in sports, he says he feels he has made tremendous improvement since last year and is getting stronger every day.
Colin says he was surprised to find that celiac affects approximately 1 percent of the population, yet awareness of the disease among doctors and the public is surprisingly low. As a result, this high school freshman is spearheading the first annual Colin Leslie Walk for Celiac Disease at Rye High School on October 22, with proceeds benefiting the Celiac Disease Center at Columbia University Medical Center — a facility that is at the forefront of researching options in diagnosing and treating this debilitating illness. Colin says his goal for the event is to raise $50,000 for awareness and research.
With the help of Sue Goldstein, who heads the Westchester Celiac Sprue Support Group, Colin has been able to gain the support needed to turn his vision into reality. This enterprising young man has even found partners for the event — WPLJ radio and Gluten Free Living magazine plan to be on hand for the festivities, and vendors such as Foods by George and Life Field’s Buckwheat Products will be selling gluten-free food at the event.
Registration for the walk will begin at Rye High School, 1 Parsons Street, at 9am. Free parking is available at Rye Playland since cars will not be allowed to park at the high school; shuttle buses from Rye Playland will begin taking participants and onlookers over to the event beginning at 8:45am. There will be two routes offered to participants — 2- and 4-mile walks which offer scenic views of Milton Point.
Colin’s hope is that the walk becomes an annual tradition so that funds raised on behalf of the Celiac Disease Center, will bring doctors another step closer to early diagnosis and a cure. He says, “I want to make people aware of this disease so that no one has to go through the long journey to getting diagnosed that I went through.”
To register online for the Walk or to find out more about diagnosis and treatment, visit the Celiac Disease Center at www.celiacdiseasecenter.columbia.edu.
For more information on the Walk, email celiacwalk@optonline.net. Donations can be made to the Westchester Celiac Sprue Support Group and mailed to the following address: Westchester Celiac Sprue Support Group, 15 Hix Avenue, Rye, N.Y. 10580.
