The gluten-free diet: How to provide effective education and resources
Section snippets
Sources and quality of information
Patients seek information on CD and the GFD from a variety of sources, including health professionals; celiac support groups; food companies; health food and grocery stores; alternative health practitioners; the Internet; libraries; medical, dietetic, and nursing associations; government departments; media; family; and friends. Unfortunately, patients frequently receive outdated, inaccurate, and/or conflicting information from many of these sources. This results in confused and frustrated
Access to information
Because nutrition therapy is the only treatment for celiac disease, it is essential that newly diagnosed patients be referred to a dietitian with expertise in CD. Case (2004 unpublished) conducted an on-line and/or telephone survey of 102 dietitians in the United States (45) and Canada (47) to ascertain referral procedures and practices. CD is considered a high priority by the majority of the dietitians, with patients being seen within 1–2 weeks of referral in both the United States and Canada.
Successful management and effective education
Successful management of CD requires (1) a team approach, including the person with CD, family, physicians, dietitian, celiac support group, and caregivers; (2) an individualized approach; (3) an understanding of quality of life issues; (4) use of evidence-based, current information and resources; and (5) regular follow-up to monitor compliance and nutritional status, as well as additional information and support.15, 16
Once a diagnosis is made, the physician must clearly communicate, with a
Poorly controlled/nonresponsive celiac disease
It is critical to conduct a systematic review of nonresponsive CD because several factors may be responsible for poor control such as intentional and/or unintentional gluten ingestion and coexisting gastrointestinal conditions (eg, lactose intolerance, bacterial overgrowth, microscopic colitis, pancreatic insufficiency, collagenous colitis, enteropathy-associated T-cell lymphoma, and refractory sprue).15, 18, 21, 22 The most common cause of nonresponsive CD is gluten ingestion, either
Resources
There are many resources on CD and the GFD available to patients/families and health professionals from a wide variety of sources (Table 5). It is important that they choose resources that are current and evidence-based. This is a major challenge because research and information on CD and the GFD is ongoing and continually expanding.
Positive initiatives
Innovative initiatives and partnerships among health professionals, CD patient groups, GF specialty companies, and health food and grocery stores have been established to raise awareness about the increasing number of people with CD, the growing need for GF foods, and the further education and training regarding CD and the GFD. The following are examples of specific initiatives.
Recommendations
- 1
Additional training on CD and its dietary treatment at the undergraduate, internship/residency, and practicing levels for physicians, dietitians, nurses, and other allied health professionals is essential.
- 2
Dietetic and Medical Associations need to establish specific Medical Nutrition Therapy protocols and offer continuing professional education (CPE) programs at national and regional conferences, as well as practical on-line and print resources.
- 3
It is essential that dietitians providing Medical
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