<<Disclaimer: Verify this information before applying it to your situation.>> Report from Digestive Disease Week, 1996<8> ------------------------------------------- by Ann Whelan editor/publisher of Gluten-Free Living Digestive Disease Week (DDW) is the world's largest assembly of gastroenterologists and related specialists. [In 1996] DDW was held in May in San Francisco. Over 12,000 physicians and researchers from all over the globe gathered to learn more about their specialty, network with colleagues, and review the very latest equipment and products. The annual event is sponsored by the American Gastroenterological Association, The American Society for Gastrointestinal Endoscopy, The American Association for the Study of Liver Diseases, and the Society for Surgery of the Alimentary Tract. In the main exhibit hall, company representatives explained what their latest equipment, medications, and ancillary products do and the ways in which they might improve clinical practice and research. The exhibits ranged in size from huge displays of high-tech equipment to much smaller specialized food displays like those of our very own Dietary Specialties and EnerG Food. One section of the exhibit hall was devoted to nonprofit organizations and included groups such as the Crohn's & Colitis Foundation of America and the American Digestive Health Foundation. The Celiac Disease Foundation (CDF) and the Gluten Intolerance Group of North America (GIG) represented Celiac Disease (CD), as they have for several years. I had been invited by Elaine Monarch, founder and Executive Director of CDF, to join her in speaking to physicians. Questions are answered ---------------------- Elaine Monarch, CDF board member Elizabeth Purko, and I answered questions, provided literature, and talked nonstop. We offered to send more information. We repeated the same things we people with CD always do: Look for us. We're out there and we need you. These are our symptoms. These are our problems. Ever politely and tenaciously, we did what we could to put CD on their personal gastrointestinal map. We encouraged them to attend the clinical symposium on Celiac Disease that was included in the week's curriculum. Initially conceived by Elaine Monarch, coordinated by CDF Medical Advisor Martin Kagnoff, M.D., and sponsored by the American Gastroenterological Association, the afternoon symposium featured three celiac experts: Dr. Kagnoff, Paul Ciclitira, M.D., and Michael Marsh, D.Sc., M.D. In the past years at DDW, Monarch said, the physicians had not been as receptive to information about Celiac Disease as she would have liked. Most involved in planning this year's symposium were extremely pleased by the response. The posted sign said the room held 340 people. All seats were filled and listeners lined the aisles and crowded into the back. Dr. Kagnoff, a prominent researcher who is Professor of Medicine at the University of California, San Diego, served as moderator and set the stage by detailing what is known and not known about the process that activates CD in susceptible individuals. He was followed by Dr. Paul Ciclitira. Dr. Ciclitira is a London gastroenterologist. Early in his talk he noted how the incidence of CD keeps changing because of accurate serological screening tests. "I've been advised that in this country it's recently been revised from 1 in 6,000 to 1 in 3,000," he said. "Therefore you're talking about 150,000 people with CD. And it's my opinion that there are an awful lot of patients out there who are not diagnosed. In Europe, the figures again keep changing, but in general they're in the order of 1 in 1,000." More striking still, Dr. Ciclitira added: "It's known in Galway and in some areas of Ireland that it's 1 in 300 of the population, and in fact it's the most common reason for admission to a medical bed in Galway Hospital." Testing family members ---------------------- Dr. Ciclitira said that more and more commonly he sees patients presenting in the later age groups. Like Dr. Marsh, who followed, he was adamant not only about the necessity for physicians to be aware of the possibility of CD with certain presentations, but also about the necessity for testing and treating the family members of celiac patients. "In my experience, first-degree relatives of patients with Celiac Disease have approximately a 15 percent chance of having the same condition," Dr. Ciclitira said. "If the members of a family with CD have unexplained symptoms that have gone on for many years, and they can be either psychiatric or gastrointestinal, that figure in my experience rises to 50 percent. Therefore it becomes even mandatory to actually consider the diagnosis if you've got a family history with CD, and often these people present with mild psychiatric abnormalities." Dr. Ciclitira also noted other diseases in which Celiac Disease can be a simultaneous problem: * Insulin Dependent Diabetes Mellitus: "The papers here show eight percent have concurrent CD and in my opinion, it warrants serological screening." * Thyroid Disease: "Six to eight percent of patients with Graves Disease have CD." * Down Syndrome: "The latest publication is that between 20 and 30 percent of children with Down Syndrome have gluten sensitive enteropathy." And, of course, he warned the doctors present of the danger of lymphoma from untreated Celiac Disease: "In my experience, in untreated CD, approximately 10 to 20 percent of patients potentially go on to a T-cell lymphoma. This is important because these patients often present to your surgical colleagues at four in the morning with an unexplained perforation of the small intestine." CD treatment is discussed ------------------------- Dr. Michael Marsh, author of _Coeliac Disease_ (Blackwell Publishers, 1992), then discussed CD treatment. He divided his talk into four patient categories: conventional, latent-compensated, slow responders, and refractory. First, the British physician encouraged the doctors to be positive about the diet after they diagnose CD and to "emphasize the things that can be eaten rather than the things that can't." He said he's come across patients who are afraid of eating anything or who lose weight because they don't understand the diet. Dr. Marsh also recommended making sure nutrients are restored, particularly iron, folate, calcium, and vitamin D. He underlined the importance of the latter nutrients by saying, "There's no doubt that an adult, particularly with latent CD, may be very predisposed to bone disease." Moving on to what he called "latent-compensated disease," meaning those patients "who are gluten sensitized but who may not have clinical developments (symptoms), depending on the degree of mucosal injury," Dr. Marsh encouraged the physicians to be aware of the family incidence of CD and of the fact that some family members may have significant intestinal damage but be completely asymptomatic. Astoundingly, he said that the overall prevalence of disease in family members is about 11 percent but "consistently 50 percent of those relatives (the 11% who are sensitized to gluten) with a flat mucosa are asymptomatic. This proves that to have a flat mucosa you don't need to have symptoms at all and, in fact, if those people had not been biopsied, they would have considered themselves not to have gluten sensitivity." This latent-compensated state is important to recognize because of the "great predisposition to malignancy in untreated gluten sensitivity." Dr. Marsh reported an increased incidence of cancer of the esophagus, brain, and bladder in males and of breast cancer in females. "In many people who have presented with malignancy," he said, "the proximal mucosa has been normal so we can't rely on the proximal mucosa. This is where other factors may be important, such as endomysial screening and looking elsewhere in the intestine." Dr. Marsh urged the physicians to "work up" patients presenting with malignancy for Celiac Disease in order to assemble a body of epidemiological evidence. "How many people with lymphomas who present to oncology do in fact have a gluten sensitive form of disease?" he asked rhetorically. "Here we need a jejunal biopsy and we need to look for gamma delta cells and endomysial cells and do a gluten challenge either by jejunal or rectal challenge." Dr. Marsh called his next patient category, the slow responder, very important because he believes that most will, in fact, eventually respond if they are "carefully looked at." He urged the physicians to check the slow responder's diet, antigliadin antibodies, and nutrient levels and to look for ancillary disease such as pancreatic problems or intestinal overgrowth. He also recommended a visit to an experienced dietitian. It was with his fourth category where Dr. Marsh's advice was discouraging. This very small group of refractory patients usually presents above age 50 with persistent, unremittant diarrhea. "I think refractory disease is no longer gluten dependent," he said. "It seems to be a process that is now totally independent of gluten sensitivity...It's very difficult to know how to treat these kinds of patients." Time ran out, so the question-and-answer session following the three talks was very limited. As celiac patients, we can only take heart from the interest this gathering seemed to indicate and hope it continues, especially here in the United States. [Ann Whelan is the publisher of the bimonthly newsletter _Gluten-Free Living_. Subscriptions are $29 for one year, $49 for two years. Outside the USA add $5. Write to Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY 10706. I have found this newsletter to be well-written, informative, and worth the price of the subscription. I highly recommend it.--editor]