Celiac Disease - NIH Consensus Development Program - National ...

In order to effectively counsel individuals with CD, physicians and dietitians mustunderstand the emotional and psychological impact of the disease and diet, as well as thecomplex quality-of-life issues patients and their families face on a daily basis, and offer practicaladvice and specific strategies to help them successfully follow the GFD. (5,14)Poorly Controlled/Nonresponsive Celiac DiseaseIt is critical to conduct a systematic review of nonresponsive CD, as several factors maybe responsible for poor control, such as intentional and/or unintentional gluten ingestion andco-existing gastrointestinal conditions (e.g., lactose intolerance, bacterial overgrowth,microscopic colitis, collagenous colitis, enteropathy-associated T-cell lymphoma and refractorysprue). (1,3,7,20) The most common cause of nonresponsive CD is gluten ingestion, either intentionalor unintentional. (1,4,7,13) Therefore, it is essential that the patient have ongoing followup andeducation with a dietitian experienced in CD. Better dietary compliance can reduce the risk offurther complications and associated health care costs.Sources and Quality of InformationPatients seek information on CD and the GFD from a variety of sources including healthprofessionals, celiac support groups, health food stores, alternative health practitioners, theInternet, libraries, dietetic associations, food companies, and the media. Unfortunately, patientsfrequently receive outdated, inaccurate, and/or conflicting information from some of thesesources, resulting in patients unnecessarily restricting certain foods and thus limiting the varietyand nutritional quality of their diet. Several studies have reported on the perceived quality ofinformation that patients receive from different sources. (5,8,12,14,19) The majority of adults surveyedreported a high level of confidence in the information provided by celiac support groups;however, gastroenterologists, dietitians, and family physicians received significantly lowerratings.Access to InformationAs MNT is the only treatment for CD, it is essential that newly diagnosed patients bereferred to a dietitian. Case (2004 unpublished) conducted an online and/or telephone survey of96 dietitians in the United States and Canada to ascertain referral procedures and practices.Although CD is considered to be a high priority by the majority of the dietitians, with patientsbeing seen within 1–2 weeks of referral in both the United States and Canada, many patients arenot always referred to a dietitian for MNT. Another major concern in the United States is thelimited or lack of reimbursement for MNT by insurance companies. Most patients must pay forthe service, which can range from $60–$295/hour with an average rate of $92/hour. Somepatients are unwilling or unable to afford the counseling and are seeking alternative sources ofinformation and education.ResourcesThere are numerous resources available to patients and health professionals from a widevariety of sources such as celiac support groups (Celiac Disease Foundation, Gluten Intolerance99