Introduction Background<strong>Celiac</strong> disease is a disorder primarily affecting the gastrointestinal tract that ischaracterized by chronic inflammation of the mucosa, which leads to atrophy of intestinal villi,malabsorption, and protean clinical manifestations that may begin either in childhood or adultlife. Symptoms can include abdominal cramping, bloating, and distention, and untreated celiacdisease may lead to vitamin and mineral deficiencies, osteoporosis, and other problems. Thedisease is also strongly associated with the skin disorder, dermatitis herpetiformis. <strong>Celiac</strong>disease’s major genetic risk factors (HLA-DQ2 and HLA-DQ8) and environmental triggers(specific peptides present in wheat, rye, and barley) have been identified, and most patientsexperience complete remission after exclusion of these grains from the diet. Thus, there has beenconsiderable scientific progress in understanding this complex disease and in preventing orcuring its manifestations by dietary interventions.At the present time, celiac disease is widely considered to be a rare disease in the UnitedStates. However, recent studies, primarily in Europe but also in the United States, suggest that itsprevalence is much higher than previous estimates, raising the concern that the disease is widelyunder-recognized. Recent progress in identification of autoantigens in celiac disease have led tothe development of new serological diagnostic tests, but the appropriate use of testing strategieshas not been well defined. Some patients with celiac disease may be at risk for non-Hodgkin’slymphoma, a rare cancer affecting the gastrointestinal tract. It is not yet clear, however, what theimpact of this observation should be on diagnostic and treatment strategies.Conference ProcessTo address these issues, the <strong>National</strong> Institute of Diabetes and Digestive and Kidney<strong>Disease</strong>s (NIDDK) and the Office of Medical Applications of Research (OMAR) of the <strong>National</strong>Institutes of Health (<strong>NIH</strong>) are sponsoring a consensus development conference to explore andassess the current scientific knowledge regarding celiac disease. The conference will be heldJune 28−30, 2004, at <strong>NIH</strong> in Bethesda, Maryland. Specifically, the conference will address thefollowing key questions:• How is celiac disease diagnosed?• How prevalent is celiac disease?• What are the manifestations and long-term consequences of celiac disease?• Who should be tested for celiac disease?1
• What is the management of celiac disease?• What are the recommendations for future research on celiac disease and relatedconditions?During the first 1 1/2 days of the conference, experts will present the latest celiac diseaseresearch findings to an independent panel. After weighing all of the scientific evidence, the panelwill prepare a consensus statement answering the questions above. On the final day of theconference, the panel chairperson will read the draft statement to the conference audience, andinvite comments and questions. A press conference that afternoon will allow the panel to respondto questions from the media.General InformationConference sessions will be held in the Natcher Conference Center, <strong>NIH</strong>, Bethesda,Maryland.The conference may be viewed live via Webcast at http://videocast.nih.gov/. Webcastsessions will also be available after the conference.The dining center in the Natcher Conference Center is located on the main level, onefloor above the auditorium. It is open from 6:30 a.m. to 2:30 p.m., serving hot breakfast andlunch, sandwiches and salads, and snack items. An additional cafeteria is available from7:00 a.m. to 3:30 p.m., in Building 38A, level B1, across the street from the main entrance to theNatcher Conference Center.The telephone number for the message center at the Natcher Conference Center is301-594-7302.Conference SponsorsThe primary sponsors of the conference are NIDDK and OMAR of the <strong>NIH</strong>, acomponent of the U.S. Department of Health and Human Services. The conference iscosponsored by the U.S. Food and Drug Administration, the U.S. Department of Agriculture, the<strong>National</strong> Institute of Child Health and Human <strong>Development</strong>, the <strong>National</strong> Cancer Institute, andthe <strong>National</strong> Institute of Allergy and Infectious <strong>Disease</strong>s.The <strong>National</strong> Library of Medicine (NLM) and the Agency for Healthcare Research andQuality (AHRQ) provided additional support to conference development.Financial DisclosureEach speaker presenting at this conference has been asked to disclose any financialinterests or other relationships pertaining to this subject area. Please refer to the material in yourparticipant packet for details.Panel members signed a confirmation that they have no financial or other conflicts ofinterest pertaining to the topic under consideration.2
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- Page 13 and 14: Lisa H. RichardsonConsumer Represen
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- Page 47 and 48: ReferencesFamily History of Celiac
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een widely reported. The question r
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The Many Faces of Celiac Disease: C
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References1. Green PH, Jabri B. Coe
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Association of Celiac Disease and G
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Does the Gluten-Free Diet Protect F
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Skin Manifestations of Celiac Disea
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allow a better understanding of the
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4. Henriksson KG, Hallert C, Walan
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characterized, clinically-identifie
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10. Hoffenberg EJ, Emery LM, Barrig
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ataxia, epilepsy with posterior cer
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Consequences of Testing for Celiac
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Osteoporosis/FracturesThere were 11
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Dietary Guidelines for Celiac Disea
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21. Thompson T. Thiamin, riboflavin
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In order to effectively counsel ind
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9. Hallert C, Granno C, Hulten S, M
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adhered to the GFD after more than
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Patient education, close supervisio
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26. Mustalahti K, Lohiniemi S, Laip