Demand for gluten-free foods that exclude wheat, barley, and rye is emerging as one of the fastest growing dietary trends in America. Sales of gluten-free foods are booming and Amazon.com lists more than 450 gluten-free cookbooks. At least one well-known fast-food chain is now touting its gluten-free menu items.

But for millions of Americans who suffer from celiac disease or are otherwise sensitive to gluten, a gluten-free diet is more than just a fad – it’s a lifelong commitment that can mean the difference between sickness and health.

Lifelong adherence to a gluten-free diet can be difficult and challenging, and requires intense learning and commitment on the part of patients, their family members, and caregivers. With their expertise in nutrition, education, and the social and psychological aspects of food, dietary professionals are uniquely suited to help improve the quality of life of millions of gluten-sensitive individuals.

Celiac Disease

Celiac disease – also known as celiac sprue or coeliac disease – is the most highly researched and well-defined type of gluten sensitivity, affecting nearly 3 million Americans. Celiac disease (CD) is an autoimmune condition triggered by exposure to gluten and characterized by damage to the small intestine. Gluten intolerance, a milder form of gluten sensitivity, affects millions more. A gluten-free diet has been shown to benefit all individuals with some of degree gluten sensitivity.

Once thought to be a rare childhood gastrointestinal disorder, celiac disease is now recognized as a very common, multisystemic disease affecting people of all ages. Its prevalence within the United States has been reported as follows:

• 1 percent of the general population has celiac disease
• 5 percent of first-degree relatives have celiac disease
• Adult presentations outnumber pediatric presentations by a ratio of 4-to-1
• 50 percent of new diagnoses occur in individuals age 50 and older
• 75 percent of people with CD are women

With the development of serologic markers and heightened awareness of gluten sensitivity, we now know that most symptoms are “extra-intestinal.” Fewer than 10 percent of individuals display the “classic” form of disease characterized by gastrointestinal symptoms of chronic diarrhea, constipation, gas, and bloating. The vast majority – up to 90 percent – have “atypical” disease (presenting with extra-intestinal symptoms) or latent disease (testing positive but presenting with no outward symptoms). About 25 percent of celiac patients present with a severe rash known as dermatitis herpetiformis.

Despite heightened awareness and understanding of its clinical course, celiac disease remains under-diagnosed, owing to its chameleon-like nature and its persistent misconception as a rare childhood illness. Prior to the availability of serologic testing, the duration between onset of symptoms and an accurate diagnosis averaged nine years; today, the average duration is still a lengthy four years.

The Clinical Chameleon

The clinical presentation of celiac disease can vary widely from one patient to the next, depending on the length and severity of disease. In addition to multi-systemic clinical presentation, celiac disease can be accompanied by neurological disorders and secondary conditions arising from malabsorption. Moreover, individuals with celiac disease have been shown to have a genetic predisposition to developing other autoimmune conditions as well as certain cancers. See Table 1.


The Gluten-Free Diet

To date, the only effective treatment for celiac disease is to permanently and entirely eliminate the patient’s exposure to gluten. In all but a few cases, strict dietary control can achieve complete remission from as little as two weeks to two years.

Patients placed on a gluten-free diet must avoid foods containing wheat, barley, rye, and derivatives of these grains. Most pastas, cereals, breads, and beers should be avoided. Care should be taken to avoid “hidden” sources of gluten, including foods containing modified food starches, malt, or soy colorings (cold cuts, soups, soy sauce, malt vinegar). Oats, though naturally gluten-free, can easily be cross-contaminated during production or transport, and thus should be used with caution.

Allowable foods include those that are naturally gluten-free, such as fresh fruits, vegetables, beef, poultry, fish, nuts, and eggs. Processed foods labeled as “gluten-free” are defined by the Food and Drug Administration as those:

• containing no prohibited grains
• derived from a prohibited grain but processed to remove gluten, or
• containing less than 20 ppm gluten) are also acceptable.

Because exposure to even minute amounts of gluten can trigger a reaction, non-food products containing gluten that are used in or near the mouth should be used with caution. These include medications and dietary supplements that use gluten as a binding agent, beauty aids such as lipstick and lip balms, postage stamps, and communion wafers.

Nutritional Supplementation

Avoiding exposure to gluten is the cornerstone of any gluten sensitivity management program, but it is only the beginning. Patients’ nutritional status can vary greatly depending on the severity of disease. Dietary supplementation may be required to replace nutrients lost due to malabsorption, restore gastrointestinal integrity, and address autoimmune-mediated inflammation. Table 2 lists possible dietary supplement protocols.


Long-Term Management

Lifelong adherence to a gluten-free diet can be challenging and frustrating for patients, families, and caregivers. Not only is gluten ubiquitous in processed foods, but many of these foods are expensive, unappetizing, and can even be unhealthy. (Manufacturers frequently substitute butter and sugar to make up for flavor and texture lost by removal of gluten,, while fortified wheat, a substantial source of iron and B vitamins, is often replaced with unfortified ingredients.) Options for dining away from home may be limited, and there is no guarantee that “gluten-free” foods ordered at a restaurant or served at a social function have been properly prepared to avoid cross-contamination.

Given so many obstacles, it’s no surprise that many gluten-sensitive patients express anger and frustration at having limited options, and that rates of compliance are low. Dietary professionals can help their patients and their families navigate a path to good health by listening to their needs, educating them on food selection, reading labels, meal planning, and food preparation, and by monitoring their progress closely. To counter gluten-free foods that are high in fat and low in nutrients, and avoid weight gain, patients should also be encouraged to get regular exercise and eat unprocessed, naturally gluten-free foods.

Six Essential Elements

Recognizing that successful management requires a holistic, comprehensive approach, the National Institutes of Health Consensus Development Conference on celiac disease has identified six essential elements to successfully managing patients with celiac disease:

C: Consultation with a skilled dietitian
E: Education about celiac disease
L: Lifelong adherence to a gluten-free diet
I: Identification and treatment of nutritional deficiencies
A: Access to an advocacy group
C: Continuous long-term follow-up

Gluten sensitivity is a widespread condition affecting millions of individuals. As awareness of the benefits of a gluten-free diet increases, dietary professionals who are committed to a comprehensive therapeutic approach including education, lifestyle counseling, and clear communication will have the greatest success in helping to improve their patients’ quality of life.

– Debora Robinett, MA, RD, CD, is president of the Health Enhancement Corporation, as well as her own practice, in Tacoma, Washington. Deanna Minich, PhD, FACN, CNS, is an international lecturer on nutrition and the vice president of Research and Development Communications for Metagenics, Inc. in San Clemente, Calif.

References:

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3.    Llorente-Alonso MJ, Fernandez-Acenero MJ, Sebastian M. Gluten intolerance: sex- and age-related features. Can J Gastroenterol. 2006;20(11):719-722.
4.    Humbert P, Pellitier F, Dreno B, Puzenat E, Aubin F. Gluten intolerance and skin diseases. Eur J. Dermatol. 2006;16(1):4-11.
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7.    *Source: National Institutes of Health Consensus Development Conference Statement. June 28-30, 2004. Available at http://consensus.nih.gov/2004/2004CeliacDisease118html.htm. Retrieved 1/11/10.