It's estimated that one in 100 people in the United States are living with celiac disease, but there are only a handful of celiac centers throughout the country. In response to a growing need for educational materials, clinicians at Beth Israel Deaconess Medical Center's Celiac Center have launched CeliacNow (celiacnow.org), a nutritional management website designed to maximize the health and wellbeing of people living with celiac disease and other gluten-related disorders.
"We know that there are people all across the country who have very little access to the medical care available at a celiac center, so a lot of people are doing this on their own; they're managing their nutrition and, frankly, trying to figure out their medical care, too," says Daniel Leffler, MD, Director of Research at BIDMC's Celiac Center, the only multidisciplinary center in New England specializing in the care of patients with celiac disease and gluten-related disorders.
"Our hope is to provide a comprehensive resource for celiac disease and non-celiac gluten sensitivity, and we're starting with the nutritional component," says Melinda Dennis, MS, RD, LDN, the Celiac Center's Nutrition Coordinator.
Dennis, a nationally recognized expert in celiac nutrition, developed the CeliacNow website with Real Life with Celiac Disease co-author, Leffler, and Ciaran Kelly, MD, a gastroenterologist and the Medical Director of the Celiac Center. The site will be continually updated with new nutrition information and will grow over the coming year as extensive medical information on celiac disease is added.
Celiac disease is a genetic, autoimmune disease that affects digestion, causing inflammation that can damage the small intestine and interfere with nutrient absorption. Symptoms vary widely and range from gastrointestinal discomfort to skin rash to irritability and fatigue. Untreated celiac disease can lead to infertility, osteoporosis, iron deficiency, anemia and other more serious complications. Treatment involves the complete elimination of gluten, a protein found in wheat, rye and barley. It sounds simple, but in practice it's much more complicated.
"We want people to come to the site to learn what they need to know about living with celiac disease or gluten sensitivity and what foods to avoid and what foods to choose," said Dennis. She says the site can also help people educate themselves about the potential nutritional pitfalls inherent in the gluten-free diet unless it's done correctly.
"Nobody gets enough fiber in his diet, but it can be a real problem on the gluten-free diet" says Dennis. "And if you're choosing the refined or processed route of going gluten free, which is so convenient and makes a lot of sense when you're just starting out, it's easy to end up with vitamin and mineral deficiencies - B vitamins, calcium, vitamin D, iron and magnesium - and that can lead to other health problems."