Help Clients Hurdle Gluten-Free Diet Dilemmas
By Sharon Palmer, RD
Today’s Dietitian
Vol. 7 No. 8 P. 28

Dietitians should be frontrunners leading gluten-free information seekers to the latest, most accurate sources. Stay on the information fast track.

If you’ve got an appointment on your calendar to educate a patient with celiac disease (CD) on a gluten-free (GF) diet, you may think it’s a slam dunk as you reach for your dog-eared manila file folder marked “gluten-free diet.” But if you haven’t been paying attention recently, CD has experienced a roller coaster ride of changes. Things really got rocking in 2003 with an article published in the Archives of Internal Medicine, in which it was revealed that nearly one of every 133 Americans suffers from CD, according to a large multicenter study from the University of Maryland Center for Celiac Research in Baltimore.1 “That’s 10 times higher than we previously thought. That’s news,” says Shelley Case, RD, author of Gluten-Free Diet: A Comprehensive Resource Guide (Case Nutrition Consulting, 2005).

CD, a genetically determined, immune-mediated disorder in which gluten damages the lining of the small intestine, is commonly misdiagnosed as irritable bowel syndrome (IBS), lactose intolerance, inflammatory bowel disease, recurrent abdominal pain of childhood, and stress.2 In fact, a national survey reveals that it takes a mean of 11 years for patients to receive a diagnosis of CD.3

CD may be diagnosed through a blood test to screen for the presence of specific antibodies followed by a biopsy of the intestine. A definitive diagnosis is confirmed once symptoms resolve after following a GF diet. Without treatment, CD can be life-threatening, presenting problems such as malabsorption, osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated CD has also been associated with an increased risk of certain types of cancer, especially intestinal lymphoma.4 What is the only possible treatment for the millions of people facing CD? A GF diet.

How Do Dietitians Measure Up to the Challenge?
With so many people walking the planet who avoid gluten like the plague, dietitians should find themselves inundated with appointments for GF counseling, but it’s not happening. “Often patients are not getting their nutrition information from the dietitian. They are going to the health food store, the Internet, or other health practitioners,” says Case, who has devoted her career to CD and GF education.

“It is much more common now that patients have nutritional information on the gluten-free diet before they see me,” reports Melinda Dennis, MS, RD, LDN, and nutrition coordinator for Beth Israel Deaconess Medical Center’s Celiac Center in Boston. When Dennis was diagnosed with CD in 1992, she returned to school to become a dietitian. She has counseled more than 275 patients with CD in the last four years. Dennis finds that patients are increasingly finding their nutritional information about the GF diet on the Internet.

According to a U.S. survey of more than 1,600 CD patients, 66% of patients were referred to a nutritionist, but 88% said they obtained most of their information about celiac disease from celiac groups.3 In a U.S. survey of 253 adults with CD, of those who saw a dietitian, only 21% rated the information helpful.3 In a recent Canadian survey, it was discovered that 83% of patients felt the information received from the Canadian Celiac Association (CCA) was excellent in contrast to 35%, 12%, and 29% from their gastroenterologist, family physician, and dietitian, respectively.5 In another Canadian survey, 44% of the patients rated dietitians as an abundant source of information, but only 55% had a high level of confidence in the quality of information they received.6 It’s no wonder so many CD patients are seeking answers to their questions outside the dietitian’s office.

“Dietitians don’t know enough,” says Cynthia Kupper, RD, CD, executive director of the Gluten Intolerance Group and chair of Dietitians in Gluten Intolerance Diseases (DIGID), a subunit of the Medical Nutrition Practice Group Dietetic Practice Group. “This is not an easy diet. Cursory information doesn’t work well. They need to know how to survive on it— where to shop and where to eat,” reports Kupper, who was diagnosed with CD 12 years ago.

“Many dietitians are not up to date with the information they provide to their clients. It’s essential that we sing from the same song sheet using the most current information,” says Case. “Go back home and look in your gluten-free diet folder. If it’s older than a year, throw it away.” Kupper echoes Case, saying, “The research is changing fast. If it happened two years ago, it doesn’t apply.”

“There’s a lot of interest to learn more. Dietitians are similar to the rest of the medical community. They need to brush up and learn the specifics,” says Dee Sandquist, American Dietetic Association (ADA) spokesperson and director of the Weight Management Center at Southwest Washington Medical Center in Vancouver, Wash.

Controversy Over GF Foods
It doesn’t make things any easier when conflicting information about the GF diet is present in various CD groups and Web sites. According to a survey of GF recommendations published in the Journal of the American Dietetic Association in 2000, unnecessary dietary restrictions are possibly being imposed on people with CD. Tricia Thompson, MS, RD, the author of the article, proposed that there is a need for consensus among U.S. celiac organizations of foods that should be included in the GF diet. Thompson found that some foods, such as millet sorghum, buckwheat, quinoa, amaranth, distilled alcohol, distilled white vinegar, and foods that contain distilled white vinegar, were acceptable to some and unacceptable to other GF groups.7 The National Institutes of Health consensus statement on CD indicates that the strict definition of a GF diet remains controversial due to the lack of an accurate method of detecting gluten in foods and the lack of scientific evidence for what constitutes a safe amount of gluten ingestion.8

Case reports that food companies and some health organizations have printed incorrect information on pamphlets or Web sites. Dennis reports that she finds outdated information floating about, with discrepancies on issues such as whether vinegar should be avoided on a GF diet. “But it’s been improving. The people that come in to see me are more aware of the basics than they were four years ago,” says Dennis.

The simple food, oats, finds itself embroiled in controversy in the GF world. Oats have traditionally appeared on the “no” side of the GF food list because of the high possibility that oats may be contaminated with wheat or barley during harvesting and processing. “Oats is a hot topic. Patients with CD can eat pure oats now,” says Case. Clinical evidence confirms that the consumption of pure, uncontaminated oats by adults (50 to 70 grams per day) and children (20 to 25 grams per day) with celiac disease is safe.9

The bottom line is that the alcohol-soluble protein fractions (prolamins) of gliadin in wheat, secalin in rye, and hordein in barley are toxic in CD, so all forms of wheat, rye, and barley and their derivatives must be avoided. But wheat-free doesn’t necessarily mean gluten-free. Wheat-free products may contain spelt, kamut, or barley, which are toxic.2

A New Approach to GF Living
Today’s challenges for GF living go far beyond counseling patients about which food products contain gluten. The GF diet is a lifelong plan for people with CD, and there’s no doubt about it, the GF diet is downright hard. In the Canadian Celiac Association Health Survey of 2,618 adults and 168 children with biopsy-confirmed CD, 44% of adults found the GF diet very or moderately difficult to follow.10 To make matters worse, experts are finding that many peripheral nutrition issues are starting to bubble to the surface for CD patients who face a long-term GF diet, including lactose intolerance, osteopenia, osteoporosis, iron deficiency anemia, folate deficiency, vitamin B12 deficiency, diarrhea, constipation, and even overweight.6

“I’m definitely seeing some patients who are coming in already overweight with CD, or struggling to control their weight on a gluten-free diet. Once they’re on the gluten-free diet, I’m seeing some excess weight gain and increased body fat. There is also a big concern with inadequate fiber,” says Dennis. “Patients with untreated celiac disease can also present with iron-deficient anemia, infertility, and fatigue.” She stresses the importance of ensuring adequate folate, iron, calcium, and vitamin D, as well, since the diet can be lacking in these nutrients and because of the known risks of anemia and bone thinning in this population.

“There’s a struggle for adequate B vitamins, fiber, and B complex vitamins. Dietitians need to be aware of this,” says Kupper. Typically, GF cereals, pastas, and breads are not enriched, thus they are low in thiamin, riboflavin, niacin, iron, and folate. Since fiber is more difficult to find in GF commercially prepared foods, those with CD need to make an effort to find alternate sources of fiber in their diets. There are some companies rising to the occasion by reformulating their products to include healthier ingredients and enriching them with vitamins and minerals. Dietitians need to educate their CD patients on how to search for enriched products that are lower in fat, sources of fiber, and iron-rich food sources.2

“There are still so few gluten-free products that are enriched,” says Dennis. “Some companies have made an effort. There are also products that are low in fat. There seems to be a trend headed in that direction.” GF products are now available through mainstream grocery stores, health food stores, the Internet, mail order, and support groups.

Sandquist advises dietitians to spend time finding out what sort of information the CD patient already knows and gear nutritional guidance based on the specific needs of the particular patient. “Professionals need to be able to adapt quickly to CD patients’ needs,” says Sandquist.

Management of CD requires a team approach, including the person with CD, the family, physicians, dietitians, celiac support group, and caregivers. The approach should also be individualized with a generous appreciation for qualify-of-life issues and the use of evidence-based current information and resources. Regular follow-up to monitor compliance and nutritional status and offer additional support is a must.10

Other nutritional issues that challenge CD patients include the coexistence of CD and type 1 diabetes, which has been reported at a rate of approximately 2% to 10%. CD patients with diabetes are especially in need of a dietitian who has experience in both diseases.2 People with CD also need to learn the specifics about avoiding cross-contamination of foods with gluten, whether it’s at home, food shopping, or dining out. They need to be offered practical advice, such as separating foods in containers at home to avoid accidental exposure by non-GF diners or how to order from a restaurant menu. Dietitians should also urge patients to seek local CD support groups. “It’s a vital step for patients to find local support groups,” says Dennis, who also suggests that dietitians should get plugged into these local support groups to stay well-versed in the changing language of the GF diet.

Teaching celiac patients how to read food labels is extremely critical when it comes to compliance. Manufacturers change their formulations all the time and those with CD need to be on the lookout for potential foods and ingredients that may hide gluten, from modified food starch to hydrolyzed vegetable protein. GF counseling should even extend to medications and supplements.

The Future of GF Labeling
As if it weren’t hard enough for CD patients to follow a GF diet, food labeling has been mired in confusion. The term gluten-free in the United States is unregulated. Since many food ingredients may contain gluten, they fall on the list to avoid. For instance, modified food starch can be made from corn, tapioca, potato, wheat, or other starches. If labels indicated the plant source for modified food starch, it could be easily identified as a GF or gluten-containing food product, making food choices easier for the CD patient.

The American Celiac Task Force, comprised of healthcare professionals, celiac organizations, and GF companies, has been working hard to improve food labeling laws. The Food Allergen Labeling and Consumer Protection Act was passed by the House of Representatives on July 20, 2004. The measure was signed into law by President George W. Bush on August 2, 2004 (Public Law 108-282). The new law will require the top eight allergens (peanuts, tree nuts, soy, fish, shellfish, milk, eggs, and wheat) to be listed on all product labels including foods, dietary supplements, and vitamins by January 1, 2006. Each allergen must be listed by its “common name”—for example, “durum” would be listed as “wheat.” Allergens in flavorings, colors, or incidental additives must be listed in accordance with these requirements as well. In addition, the new law mandates that the term gluten-free on food labels must be defined and permitted by August 2008.11

Most see the act as a positive step in the path to clearer food labels. “One of my major missions is to focus on gluten thresholds and food labeling laws. This law is a good law, we need to make a compromise to keep the bill alive,” says Kupper, who points out that indicating wheat on the label will not address all the gluten grains.

GF Help Is on the Way
“I want to make sure dietitians know what they need to know. We need to bring their knowledge up to where it should be,” pledges Kupper. There is much work going on at state dietetic meetings and workshops these days to help dietitians get a handle on CD. As awareness rises in the medical community, many positive plans are taking off to improve GF living. The National Institutes of Health convened a Consensus Development Conference on Celiac Disease June 28 to 30, 2004, to improve awareness, diagnosis, and management of celiac disease. During the conference, experts presented the latest findings on CD to an independent panel, which drafted a statement to address key issues, such as diagnosis, prevalence, manifestations, long-term consequences, who should be tested, management, and recommendations for future research.8

Dietitians are paving the road to GF success, too. American and Canadian dietitians specializing in CD jointly authored the CD section in the Manual of Clinical Dietetics, 6th edition, by the ADA and Dietitians of Canada. Sandquist reports that DIGID is working with the ADA to develop an evidence-based national GF diet. At the last three ADA annual conferences, CD and GF educational sessions and displays were featured. GF specialty companies and dietitians have joined to showcase GF products and resources in a specially designated area of the main exhibit hall. The Quick Start Diet Guide developed by the Celiac Disease Foundation (CDF) and Gluten Intolerance Group (GIG) is available to assist dietitians and their patients on the GF diet. The Celiac Disease Nutrition Guide (published by the ADA) by Thompson and Merri Lou Dobler, MS, RD, is another excellent resource for dietitians to use in counseling their patients. Even grocery stores are ramping up efforts by employing dietitians to offer GF diet education.

Case partnered with several CD groups, including the CDF and GIG, to create a CD Toolkit, which was introduced two years ago at the ADA Food & Nutrition Conference & Expo (FNCE) in San Antonio. “We felt that it would be very helpful to have all of this up-to-date and practical information in one folder,” Case says. “Dietitians are really hungry for practical information.” During the first year, 1,000 tool kits, which are updated each year, were distributed at the product marketplace at FNCE along with special education on CD. The following year, 1,500 tool kits were distributed. FNCE attendants can expect to see the CD tool kits again at this year’s conference.

The CCA’s professional advisory board, of which Case is a member, along with a team of dietitians, is also working on an exciting project—a downloadable resource for health professionals that will be regularly updated, making the GF manila file folder concept extinct. Case reports that it would be appropriate for patient education in the United States, as well as Canada, and will hopefully be rolled out by the end of the year.

Dietitians as Gf Leaders
“There are a significant number of people undiagnosed. Dietitians can take a leadership role and recommend screening for CD,” urges Case. Until recently, CD was considered a rare disorder. The Canadian Celiac Association Health Survey and two U.S. National Celiac Surveys revealed that many physicians were unaware of CD, resulting in significant delays in diagnosis and/or misdiagnosis.10 After Case presented a workshop on CD to a group of dietitians recently, the dietitians provided their physicians with an in-service on CD. The physicians then screened their IBS patients and found that 10% of them had CD. Sandquist adds, “Dietitians have a great opportunity to educate physicians and pharmacists.”

Dietitians hard at work in the GF world would like to see CD specialists emerging so patients are referred to dietitians with expertise in the field. A dietitian with such experience could offer tremendous support to patients by developing a multipronged plan of nutritional care that includes education of the complexities of the GF diet, sources of hidden gluten, balanced meal planning, shopping for foods, label reading, reviewing additional food intolerances, cross-contamination, dining out and traveling, benefits of exercise and relaxation, appropriate vitamin and mineral supplementation, food recall and compliance review, and credible resources and support groups.2 Dietary compliance has been shown to reduce the risk of further complications and associated healthcare costs and improve the quality of life in patients with CD.10

“There is good news. Dietitians and the industry are partnering to work with CD. This is a unique disease—diet is the only treatment,” says Case. “We’re not being effective. Dietitians should be the leaders.” Sandquist sums it all up: “This is a great opportunity for dietitians to let the profession shine.”

— Sharon Palmer, RD, is a freelance journalist living in southern California. She would like to thank Shelley Case, RD, for her guidance with this article.

References
1. Fasano A, Berti I, Gerarduzzi T, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Arch Intern Med. 2003;163(3):286-292.

2. Dennis M, Case S. Going gluten-free: A primer for clinicians. Practical Gastroenterol. 2004;28(4):86-102.

3. Green PH, Stavropoulos SN, Panagi SG, et al. Characteristics of adult celiac disease in the USA: Results of a national survey. Am J Gastro. 2001;96(1):126-131.

4. University of Maryland Center for Celiac Research, Celiac Disease Facts. Available at: http://www.celiaccenter.org/facts.asp

5. Canney A, Zarkadas M, Switzer C. The Canadian Celiac Health Survey—the Ottawa chapter pilot. BMC Gastroenterology. 2003;3(1):8.

6. Lamontagne P, West GE, Galibois I. Quebecers with celiac disease: Analysis of dietary problems. Can J Diet Prac Res. 2001;62(4):175-181.

7. Thompson T. Questionable Foods and the gluten-free diet survey of current recommendations. J Am Diet Assoc. 2000;100(4):463-465.

8. National Institutes of Health Consensus Development Conference Statement: Celiac Disease, August 9, 2004. Available at: http://consensus.nih.gov/cons/118/118celiacPDF.pdf

9. Canadian Celiac Association, Position Statement on Oats, May 28, 2005. Available at: http://www.celiac.ca/articles/paboats.html

10. Case S. The gluten-free diet: How to provide effective education and resources. Gastroenterology. 2005;128(4 Suppl 1):S128-S134.

11. Sec. 555.250 Statement of Policy for Labeling and Preventing Cross-contact of Common Food Allergens, www.fda.gov/ora/compliance_ref/cpg/cpgfod/cpg555-250.htm

A Gluten-Free Resource Guide
Celiac.com
www.celiac.com

Celiac Disease Center at Columbia University
www.cdcc.hs.columbia.edu

Celiac Disease Foundation
www.celiac.org

Celiac Sprue Association/United States of America, Inc.
www.csaceliacs.org

Children’s Digestive Health and Nutrition Foundation
www.celiachealth.org

Cooking Gluten-Free!
www.cookingglutenfree.com

Gluten-free Cooking Club and School
www.glutenfreecookingclub.com

Glutenfreeda.com
www.glutenfreeda.com

Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case, RD
www.glutenfreediet.ca

Gluten-Free Living Magazine
www.glutenfreeliving.com

Gluten Intolerance Group
www.gluten.net

Living Without Magazine
www.livingwithout.com

Medical Nutrition Practice Group DPG/Dietitians in Gluten Intolerance Diseases Subunit
www.eatright.org/Public/ContinuingEducation/index_dpg27.cfm

Savory Palate, Inc.
www.savorypalate.com

University of Chicago Hospitals Celiac Disease Program
www.uchospitals.edu/specialties/celiac/

University of Maryland Center for Celiac Research
www.celiaccenter.org

What? No Wheat? Enterprises
www.whatnowheat.com

Six Elements in Managing Celiac Disease:
C – Consultation with a skilled dietitian
E – Education about the 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 by a multidisciplinary team

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