What if there was a disease that afflicted over two million Americans but 97% of the sufferers went undiagnosed? What if this disease had many debilitating effects and could even cause death? What if the cure for this insidious disease was as simple as controlling diet? Celiac disease constitutes a national health emergency, but we don’t hear much about it.
Michelle Melin-Rogovin has made it her life mission to spread the word about celiac disease. She commutes from Forest Park to Hyde Park, where she is the Executive Director of the University of Chicago Celiac Disease Program. So, what is celiac disease? It’s a hereditary disorder that interferes with the small intestine’s ability to absorb nutrients. In other words, celiac sufferers experience a form of malnutrition that can cause a host of medical problems: osteoporosis, infertility, neurological deficits and in rare cases, cancer. And what sets off this domino effect of declining health is a protein found in wheat, rye and barley called gluten.
Wheat, rye and barley might sound like the recipe for beer, and thanks to advances in food preparation gluten-free beer is available. As Melin-Rogovin explained, “Celiac patients no longer have to give up the food they love.” They simply have to eliminate glutens from their diet in order to stop the damage to their small intestine.
“The U of C program is the only one of its kind in the country,” Melin-Rogovin said proudly. In her role as director, Melin-Rogovin is the chief fund-raiser and public educator. She raises money for research and generates promotional materials to raise the awareness of celiac disease. Her most recent fund-raiser was at Flav’our Cooking School, on August 23, where chef and celiac-sufferer Anna Sobaski edmonstrated gluten free cooking.
Flavour’s Christine Malone donated the facilities for the three-hour class. “We will offer more gluten-free cooking classes, if there’s a demand,” Malone said. “In fact, if we get requests, we’d be open to having classes for other food allergies.”
One of the patrons who attended the fund-raiser was Kim Koeller. who has co-authored a book called “Let’s Eat Out: Your Passport to Living Gluten and Allergy Free.” Koeller is a classic celiac case. Doctors thought she was suffering from Crohn’s Disease or Ulcerative Colitis. “I had no energy and I thought, ‘this is just the way it’s supposed to be,'” she said. Koeller’s condition grew worse and her complexion turned gray.
Although she had food allergies as a child, Koeller didn’t see the connection between diet and her debilitating condition. She attributed it the stress of undergoing four orthopedic surgeries and having a high-pressure job.
“A week after I was diagnosed, I started feeling better,” Koeller said. Koeller was especially thrilled when she received a Celiac Care Package from the U of C program. As she looked through the tasty gluten free products, Koeller exclaimed, “Oh my God, I can eat these things.” Cutting out glutens restored her energy level to what it had been decades earlier. “My movement, flexibility, skin tone and color improved,” Koeller recalled. “In fact, I participated in a triathlon last year.”
Koeller’s “Let’s Eat Out” co-author is a former restaurateur, Robert LaFrance. The book gives celiac patients and other food allergy sufferers strategies for eating out safely. As for safe home cooking, Chef Sobaski prepared several gluten-free creations. She topped her Breads by Anna gluten-free bread with lentil pate. She also made Asian Rice Noodle Salad and pizza. This last dish was eagerly anticipated by a young boy who stayed riveted by the cooking class for the entire three hours.
The Flavour event raised over $1,000 for the Celiac Disease Program. Melin-Rogovin has raised over a million dollars in donations for public education and research during her four-year tenure. Prior to taking the job at the university, Melin-Rogovin had worked in health care for fifteen years without ever hearing a word about celiac disease. She happened to be in-between jobs when she saw a young girl with celiac disease profiled on the evening news.
Melin-Rogovin immediately went to the website for the University of Chicago, and “the only thing that came up was a job description for the executive director position.” Convinced that “this was fate,” she applied for the job and was settling into her office two weeks later. She worked under the direction of the program’s founder. Dr. Stefano Guandalini.
The program’s focus is on the vast underserved population of celiac sufferers. Little did Melin-Rogovin know how demanding the job would be. Putting in 60 hours per week, she spends “100% of my time fund-raising and the other 100% educating.” This includes a great deal of traveling to spread the word about this below-the-radar disease.
Fortunately, she is sustained in her crusade by volumes of feel good stories. “I observed the biopsy procedure of a little boy who was all skin and bones.” Melin-Rogovin recalled. “Six months later, I didn’t recognize him. He had gained 20 pounds. To have that kind of impact on a person’s life is a real honor.”
Later, she was honored by a woman who believed she was going to die of celiac disease. “Can you imagine what would have happened to me if you hadn’t come to Indianapolis?” The woman joined a support group in her hometown. “Support groups reach out to those who are sick but don’t know why.” she said. “We get significant donations form these groups. It’s a symbiotic relationship.”
Melin-Rogovin continues to crisscross the country “educating people who are at risk.” This includes ilsulin-dependent diabetics, who are prone to develop celiac disease. Symptoms of the illness include anemia, fatigue, pain in the joints and failure to thrive. Blood tests can rule out celiac disease but only an endoscopic biopsy can make the definitive diagnosis. Once the diagnosis is made, the patient embarks on a lifetime of eating gluten-free food.
Their first meal may come courtesy of one of the program’s Care Packages. And it continues with gluten-free restaurant meals and gluten-free cooking at home. Melin-Rogovin hopes that the educational materials she distributes, along with cooking demonstrations like the one at Flav’our, will raise awareness. If you think you may be a celiac sufferer or know someone who is, the University of Chicago Celiac Disease Program can be contacted at (773) 702-7593. Or you can go to that website Melin-Rogovin visited, www.celiacdisease.net.
