How to Find a Celiac Disease Dietitian / Nutritionist

For Patients Who Are Gluten-Free, Nutritionist Counseling Is Essential

Medical consultation
BURGER/PHANIE / Getty Images

People with celiac disease face complicated nutritional challenges, even if they are following the gluten-free diet. First, they must recover (as much as possible) from the nutrient malabsorption that occurred while they were still eating gluten, which might have caused anemia, low bone mineral density and osteoporosis, vitamin deficiencies, and other problems. As if that weren’t enough, unlike gluten-containing products in the supermarket, few commercial gluten-free products are enriched or fortified with extra vitamins, making it difficult for people with celiac disease to get enough vitamins in their diet.

Gluten-free products are often low in B vitamins, calcium, vitamin D, iron, zinc, magnesium, and fiber. In fact, research has shown that people with celiac disease are at risk for several ​side effects of the gluten-free diet, including an increased incidence of obesity.

Why a Dietitian Is Important for Your Health

Because of all these nutritional risks, the American Celiac Disease Alliance, the Digestive Disease National Coalition, the Gluten Intolerance Group of North America, and many individual doctors recommend that a registered dietitian should be part of the health care team that monitors the patient’s nutritional status and compliance with the diet.

Furthermore, studies show that for some people with celiac disease, a major reason why they can’t stay gluten-free is that they don’t understand the diet. Wouldn’t it be a relief to get some help from a professional?

What’s the Difference between a Nutritionist and a Dietitian, and Which Should I See?

In the U.S., people with any disease, including celiac disease, who need nutritional counseling should consult a Registered Dietitian (also called an RD).

RDs have completed academic and experience requirements established by the American Dietetic Association’s Commission on Dietetic Registration, including a minimum of a bachelor's degree from an accredited college or university and an accredited pre-professional experience program. RDs must also pass a rigorous professional exam and participate in ongoing accredited continuing education programs to maintain their credentials.

Some RDs hold advanced degrees and additional certifications in specialized areas of practice. Of relevance to people with celiac disease, the National Foundation for Celiac Awareness certifies registered dietitians as part of its Gluten-Free Resources, Education, and Training (GREAT) program. GREAT for Dietitians is a Continuing Professional Education (CPE) Accredited provider with the Commission on Dietetic Registration. (There are also GREAT certification programs for chefs, cafeteria workers, and other hospitality industry professionals.)

Unlike the credential RD, there is no national standard and credential associated with the titles of “dietitian” (without the word “registered”) or “nutritionist” and no guarantee that the person using those titles has had any formal education in food and nutrition. Sometimes a Registered Dietitian is also given the title of “Nutritionist” (for example, in public health, clinical specialties, and educational institutions). Sometimes, however, these titles are used by people no formal training.

Unless a nutritionist has the initials “RD” after his or her name, you must carefully verify the person's qualifications.

According to the Bureau of Labor Statistics of the U.S. Department of Labor, 48 states have laws governing dietetics, 35 states require that practitioners be licensed and 12 require that they also be certified by the state, independent of certification by any professional organizations. Be sure that your nutrition professional has met the requirements for the state (or country) where he or she practices.

Where Do I Find a Registered Dietitian?

In the U.S., you can visit the American Dietetic Association’s Find a Nutrition Professional site to find a dietitian near you. Of course, you can also ask your doctor, or members of your celiac disease support group, if they can recommend a nutrition professional.

In Australia, visit myDR.com.au; in Canada, Dietitians of Canada; in Hong Kong, Hong Kong Dietitians Associated Limited; in Ireland, the Irish Nutrition and Dietetic Institute; in New Zealand, the New Zealand Dietetic Association; in the UK, Nutri-People or the British Nutrition Foundation.

Note: See Page 1 for the sections on Why Should People with Celiac Disease See a Dietitian?, What’s the Difference between a Nutritionist and a Dietitian?, and Where Do I Find a Registered Dietitian?

Will My Insurance Pay for Medical Nutrition Therapy for Celiac Disease?

According to a joint statement from the American Celiac Task Force (now the American Celiac Disease Alliance), the Digestive Disease National Coalition, and the Gluten Intolerance Group of North America, “Medical nutrition therapy is the only accepted treatment for celiac disease… Because of the nutritional risks associated with celiac disease, a registered dietitian must be part of the health care team that monitors the patient’s nutritional status and compliance on a regular basis.” Given these guidelines, insurance companies should pay for celiac disease patients’ consultations with RDs.

Still, there's a good chance you'll need to convince your insurance company that you require care from a dietitian. The only exceptions are patients with celiac disease and diabetes. Because Medicare has ruled that patients with diabetes require medical nutritional counseling, other insurance companies will approve nutritional counseling for diabetics.

If you are faced with the challenge of convincing your insurance company to give its approval, you need to prove that medical nutritional therapy from a registered dietitian is (1) medically necessary in your case and (2) the standard of care for patients with celiac disease. The following suggestions might help:

  • Try to have as much of the “conversation” in writing as possible. If you speak with an insurance company phone representative, write down the name of the person you spoke to and the date, and take notes on what was said.
  • At a minimum, send the insurance company a prescription for nutritional therapy from your doctor, or a referral. Even better, ask your doctor -- and the nutritionist, if you've already had your consultation -- to write letters to the insurance company on your behalf explaining why the consultation is medically necessary and that this treatment is the currently accepted standard of care. If you have any other conditions that could be considered nutritional problems, such as anemia or vitamin deficiencies, mention that in your correspondence with the insurance company and remind your doctor and the nutritionist to mention it in their letters, too. If they send letters, get copies and enclose them with your correspondence to your insurance carrier, too.
  • To prove that counseling from a nutrition professional is the standard of care for patients with celiac disease, it helps to send copies of significant articles from the medical literature that emphasize this point. At a minimum, include quotes from important papers. A few appear below, at the end of this article.
  • Whenever you enclose any documents with your correspondence (copies of letters, medical test results, articles, etc.), be sure to state in your letter what it is you've enclosed.
  • Every time you send anything by mail to your insurance company, call them a week later to verify that the documents have been entered into their "system."
  • If your insurance company denies pre-approval, or denies your claim, find out what you need to do to formally appeal the ruling. When you make your appeal, send copies of all your correspondence with them to that point as well as any supporting documentation, even if you sent it before.
  • If your insurance is provided by your employer, ask your employee benefits manager to get involved. The benefits manager carries more weight with the insurance company than you do as an individual.

Articles to enclose (or quote) in correspondence with your insurance company:

  • Leffler DA et al. A prospective comparative study of five measures of gluten-free diet adherence in adults with coeliac disease. Alimentary Pharmacology & Therapeutics 2007;26:1227–1235
  • “Although current serologic tests have very high sensitivities and specificities for the diagnosis of coeliac disease, they cannot replace trained nutritionist evaluation in the assessment of gluten free diet adherence.”
  • Niewinski MM. Advances in celiac disease and gluten-free diet. Journal of the American Dietetic Association 2008 Apr;108(4):661-72
  • “This review focuses in detail on the gluten-free diet and the importance of intense expert dietary counseling for all patients with celiac disease… The gluten-free diet is complex and patients need comprehensive nutrition education from a skilled dietitian.”
  • Green PHR and Cellier C. Celiac disease. New England Journal of Medicine 2007;357:1731-43.
  • “The health care team should include a skilled dietitian who monitors the patient’s nutritional status and dietary adherence on a regular basis….An experienced dietitian is required to assess the degree of adherence [to the gluten-free diet] and possible reasons for nonadherence...”
  • Pietzak MM. Follow-up of patients with celiac disease: achieving compliance with treatment. Gastroenterology 2005;128:S135-41
  • “…compliance with the gluten-free diet, especially in the United States, is extremely challenging….Ideally, a team approach to the follow-up of the newly diagnosed patient should include… medical nutritional counseling by a registered dietician…”
  • Mariani P et al. The Gluten-Free Diet: A Nutritional Risk Factor for Adolescents with Celiac Disease? Journal of Pediatric Gastroenterology & Nutrition 1998; 27: 519-523
  • “Although in the past years there has been great improvement in diagnostic tools for CD, we believe the moment has come to devote more attention to problems regarding a correct follow-up of CD, not only the compliance with diet, but also the nutritional balance of the diet itself.”
  • Hallert C et al. Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years. Alimentary Pharmacology & Therapeutics 2002; 16: 1333–1339.
  • "We found signs indicative of a poor vitamin status in 56% of treated adult coeliac patients, including six on folate supplementation. This adds evidence to suggestion that patients adhering to a strict gluten-free diet for years are prone to the development of various vitamin deficiency states, notably folate deficiency."

Some of the material on the preceding pages (Why Should People with Celiac Disease See a Dietitian?, What’s the Difference between a Nutritionist and a Dietitian?, Where Do I Find a Registered Dietitian?, and Will My Insurance Pay?) was drawn from the following sources.

Sources:

American Celiac Task Force, Digestive Disease National Coalition and Gluten Intolerance Group of North America. Dietary guidelines and implementation for celiac disease. Gastroenterology 2005;128: S121-S127

US Dept of Labor Bureau of Labor Statistics

The American Dietetic Association

Southern Illinois University Didactic Program in Dietetics

Leffler DA et al. A prospective comparative study of five measures of gluten-free diet adherence in adults with coeliac disease. Alimentary Pharmacology & Therapeutics 2007;26:1227–1235

Niewinski MM. Advances in celiac disease and gluten-free diet. Journal of the American Dietetic Association 2008 Apr;108(4):661-72

Green PHR and Cellier C. Celiac disease. New England Journal of Medicine 2007;357:1731-43.

Pietzak MM. Follow-up of patients with celiac disease: achieving compliance with treatment. Gastroenterology 2005;128:S135-41

Mariani P et al. The Gluten-Free Diet: A Nutritional Risk Factor for Adolescents with Celiac Disease? Journal of Pediatric Gastroenterology & Nutrition 1998; 27: 519-523

Hallert C et al. Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years. Alimentary Pharmacology & Therapeutics 2002; 16: 1333–1339.

Continue Reading