|Celiac disease, an autoimmune disorder in which the lining of the small intestine is attacked because of the inability to digest gluten, has received little attention in the United States. As a result of the need for a coordinated approach to patient care, Dr. Peter Green established the Celiac Disease Center at Columbia University four years ago. Now, more people are learning about the disease and seeking a diagnosis. In addition to seeing patients at the center and engaging in research, Dr. Green, professor of clinical medicine, has written a book, “Celiac Disease: A Hidden Epidemic” (Harper Collins, February 2006), with co-author Rory Jones, who herself has the disease. The book explains the symptoms, diagnosis and treatment of the disease. Dr. Green, one of two physicians in the United States with an intense clinical and academic interest and expertise in celiac disease, will host the XII International Celiac Disease Symposium 2006, the largest gathering of celiac experts in the world. The symposium is expected to attract healthcare industry leaders, clinicians, scientists, nutritionists, diagnostic and pharmaceutical executives, policy makers, patients and journalists and will touch on every aspect of adult and pediatric celiac disease. The conference will be held Nov. 9-11 at the Hilton Hotel in New York. For more information, visit http://www.celiacdiseasecenter.columbia.edu/symposium/index.htm.
Dr. Green recently took a break from his busy schedule to talk with InVivo.
How did you become interested in celiac disease?
I first learned about celiac disease in medical school in Australia in the 1960s, and then more about it during my gastroenterology training at Harvard and Beth Israel Hospital in Boston, I learned that it is a common disease that mainly afflicts adults. As a result, I think that I was more aware of the condition and therefore diagnosed many patients with it. To date, I’ve cared for more than 1,000 patients with the disease.
When I came to the United States in 1976, however, I learned that medical students here are taught that celiac disease isn’t a common autoimmune disorder. That’s why the disease, which is actually estimated to afflict one in 100 people in the United States, is so under-diagnosed. Even though that number represents 1 percent of the U.S. population, it still takes most people an average of about 11 years to get an accurate diagnosis from their physicians.
Another problem is that there is very little interest in the disease by pharmaceutical companies because the most effective treatment is a gluten-free diet. If there seems to be little chance of making money on a drug, the industry will invest little in research to better understand the disease. The pharmaceutical industry also plays a great role in postgraduate medical education in this country. It’s a vicious cycle: no drug, little research, little education, few diagnosed, little in the way of social support for those already diagnosed.
Why do you devote so much of your book to the diagnosis of celiac disease?
It’s urgent for sufferers to receive their diagnosis as soon as possible. The symptoms of celiac disease which range from bloating and joint pain to uncomfortable skin lesions and stomach cramping can be very severe, and complications quite serious. As I say in my book, although the small intestine is the main target of injury in celiac disease, the damage doesn’t stop there. People with celiac may suffer from neurological problems such as numbness and tingling in the extremities, migraines, osteoporosis, and, sadly, certain types of cancer. A gluten-free diet won’t cure cancer, but for people with celiac disease, it can protect against its development.
It’s important to note, though, that maintaining a gluten-free diet requires a lot of discipline in the United States, where there is no uniform labeling of gluten content in foods. In Europe, Australia and some South American countries, there is clearer labeling, gluten-free foods are more available, and more knowledge about celiac disease exists in the restaurant industry. A federal law that took effect here in January calling for the clear labeling of major allergens, including wheat, still did not require the identification of gluten, nor the other grains that contain gluten, such as barley and rye.
What is the Center’s research focus.
We’ve developed research programs with colleagues at Columbia and other institutions into the genetics, pathophysiology, diagnosis and management of celiac disease and its complications. We’re creating epidemiological studies to try to learn where celiac sufferers are and we’re trying to identify the immunological mechanisms of the disease with the eventual aim of developing drug therapies.
There’s a lot going on at the Center. Describe some of your recent activities.
Since we have a liberal policy about testing relatives of patients with celiac disease, we are identifying many individuals with celiac disease before they become symptomatic. We think this is the best way to prevent the development of complications of the disease. Testing for the disease involves a simple blood test. This is followed by an intestinal biopsy performed at endoscopy, if positive. We’ve organized family screening days that have brought in hundreds of people; we plan to schedule more. We also recently started testing patients for other conditions that may complicate celiac disease, including lactose intolerance, bacterial overgrowth, fructose intolerance and abnormal intestinal transit time all of these problems can accompany celiac disease, or exist alone.
This November, we’re excited to host the XII International Celiac Disease Symposium, that will bring together experts from around the world to present the latest data on epidemiology, pathogenesis, clinical manifestations and potential non-dietary therapies for celiac disease. These therapies include vaccines as well as drug therapies. Part of the meeting will be a series of lectures for patients, nutritionists and physicians assistants.
How is the Celiac Disease Center making a difference?
Celiac disease is a national epidemic getting very little attention in the press, largely because it masquerades as other diseases and is not top-of-mind for either doctors or patients. It is a genetic autoimmune condition, which, if left untreated, can lead to serious health consequences such as Type 1 diabetes, thyroid disease, lupus, liver disease, infertility and cancer. The center’s mission is to redefine the future of celiac disease and treatment through continuing advances in research, patient care, and physician and public education. The center, which diagnoses more than 2,000 patients annually from around the world, has become renowned for its services and programs and is one of the first medical school-supported centers in the United States dedicated to the treatment and study of the disease.
For more information, visit www.celiacdiseasecenter.org.