The gluten-free diet: How to provide effective education and resources

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A strict gluten-free diet (GFD) for life is the only treatment for celiac disease (CD). This article reviews (1) the impact of the GFD on the quality of life of individuals with CD and their families; (2) the causes of poorly controlled CD; (3) the access to and source and quality of information provided by health professionals and other groups; (4) management strategies, including nutritional assessment and education guidelines; (5) a variety of resources available to individuals and health professionals; (6) innovative educational initiatives and partnerships; and (7) specific recommendations to address the increasing numbers of people with CD and the growing need for gluten-free (GF) foods and further education about CD and the GFD. Successful management of CD requires a team approach, including the person with CD and his or her family, physician, dietitian, and celiac support group; an individualized approach; understanding of quality of life issues; use of evidence-based, current information and resources; and regular follow-up to monitor compliance, nutritional status, and additional information and support. The physician must clearly communicate, with a positive attitude, an overview of CD and strongly emphasize the importance of a GFD for life. It is essential that the physician initiate an immediate referral to a dietitian with expertise in CD for nutritional assessment, diet education, meal planning, and assistance with the adaptation to the challenging new gluten-free lifestyle. Good dietary compliance will reduce the risk of further complications and associated health care costs and improve quality of life in patients with CD.

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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 Unfortunately, patients frequently receive outdated, inaccurate, and/or conflicting information from many of these sources.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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