The latest issue of Today’s Dietitian Magazine featured an article on “Gluten-Free Living and Emotional Health: What Every Dietitian Must Know.” In it, they reference celiac.org and quote Marilyn G. Geller, Celiac Disease Foundation CEO, and Janelle Smith, Celiac Disease Foundation’s Registered Dietitian. The article discusses how a deeper understanding of the impact of celiac disease and the gluten-free diet on mental health and quality of life can help Registered Dietitians improve counseling and dietary compliance in patients. The article sheds light on the psychological and emotional consequences of living with celiac disease.
It is this recent revelation that celiac disease affects more than diet that motivated Celiac Disease Foundation to form a partnership with Children’s National Health System (Children’s National) to expand mental health education around celiac disease, and to empower healthcare professionals to provide counseling. Read more about this exciting partnership here.
December 2015 Issue
A deeper understanding of the impact of celiac disease and the gluten-free diet on mental health and quality of life can help RDs improve counseling and dietary compliance.
A strictly gluten-free diet is the only treatment for celiac disease. Without it, patients suffer symptoms such as gastrointestinal (GI) distress, weight loss, fatigue, and delayed growth, and put themselves at risk of other autoimmune disorders and intestinal cancers. And yet, a significant percentage of people with celiac disease report less than strict adherence to their prescribed diet. In a disease where noncompliance often leads to severe and immediate discomfort, with real and significant long-term consequences, understanding the factors that lead to dietary lapses is essential to improving treatment.
It’s difficult to measure how well people with celiac disease stick to the gluten-free diet, but a 2009 review by Hall and colleagues found studies indicating that anywhere from 42% to 91% of celiac disease patients report strict adherence.1 In a 2012 study by Anne Lee, EdD, RDN, LD, and colleagues, 98% of celiac patients surveyed initially said they comply with necessary dietary restrictions, but when asked more specific questions the vast majority admitted to times when they knowingly ate gluten.2 “Up to 81% of men and 88% of women said they would tend to cheat in social settings like weddings, birthdays, family gatherings, or when they were out with friends,” says Lee, who serves as professionals manager for the gluten-free food company Dr. Schar USA, Inc.
Factors in Noncompliance
Patients who are knowledgeable about celiac disease and have a good understanding of the diet are seemingly more able and willing to comply with dietary restrictions than those with less knowledge, but lack of knowledge isn’t the only factor in noncompliance.3,4 In studies, patients cite the restrictive, difficult-to-follow nature of the diet, discomfort in social settings, poor taste of food, lack of available gluten-free food choices in stores and restaurants, asymptomatic disease, and cost as reasons for nonadherence, but the main theme appears to be the impact the diet has on overall quality of life.2,5
Numerous studies have found that celiac disease patients report a reduced quality of life.2,4,6 “Our study on living with celiac disease found that the strict nature of the gluten-free diet has a serious impact on an individual’s quality of life, especially in the social domain,” Lee says. “There’s such a huge social aspect to eating.” Forty-five percent of the celiac respondents reported that their physical health affected interaction with family, friends, or social groups. Problems were particularly acute for people diagnosed in adulthood, especially during the first two to five years after diagnosis.2 While following the diet appears to get easier over time, dining out and travel remain problematic.2 In Lee’s study, 25% of the females and 28% of the males chose not to dine out at all in the first two to five years after diagnosis.2 A separate study of children with celiac disease and their families found that 17% of families avoided traveling, and 46% avoided eating out in restaurants.5
“Food and eating are such a big part of our day-to-day lives, and so integral to socializing,” says Mi-Young Ryee, PhD, a pediatric psychologist at Children’s National Health System in Washington, D.C. “The gluten-free diet can be really challenging to follow.”
According to Chynna Foucek, a senior at Rice University and the founder of the College Student With Celiac blog, “There’s a feeling that you don’t want to talk about your disease in social situations. Friends want to go grab a bite to eat, or order a pizza, or go to a party. There’s a fear of missing out on social experiences.”
Children also are impacted. “It can be very difficult for children to be singled out as different,” Ryee says. “The pediatric population I see has to contend with birthday parties, school events, and daily lunches in the cafeteria.”
Marilyn G. Geller, MSPH, CEO of the Celiac Disease Foundation, saw firsthand how difficult life can be for young people with celiac disease. “My son was bullied,” Geller says. “There was name calling, even by teammates and friends. People actually threw toast on our lawn. Children and adolescents may not have the coping skills to deal with this kind of thing.”
The National Foundation for Celiac Awareness describes initiating and adhering to a gluten-free diet as “a life change that requires major emotional and physical adjustments … [which] can take a toll on mental health” and “cause frustration, stress, and anger.”7 In addition to lower quality-of-life scores than their peers, people with celiac disease have higher rates of anxiety and depression.1,4,8 “It’s normal for patients to go through the stages of grief after diagnosis,” says Janelle Smith, MS, RD, who serves as “Ask the Dietitian” for the Celiac Disease Foundation and is a celiac sufferer herself. “The diagnosis is a loss of your previous lifestyle. Many people are in denial, or express anger, or they bargain with themselves, saying, ‘Oh, I’ll just have a little bit.’ Experiencing depression from this sense of loss is very reasonable.”
Compounding the emotional effects of the diagnosis and diet is the fact that psychological changes actually are symptoms of celiac disease, most likely due to its biochemical effects.6 “Prior to diagnosis, people with celiac disease may present with symptoms such as changes in mood, sleep, and appetite, and difficulties with concentration, and there may be concerns for depression and anxiety,” Ryee says. “In fact, some patients are treated by mental health professionals for extended periods before celiac disease is properly identified and treated.”
Smith experienced this phenomenon firsthand. “Depression was my primary symptom,” Smith says. “After my diagnosis, I started a gluten-free diet, and my depression resolved.”
These psychological symptoms also may affect quality of life and dietary adherence.6 A 2013 study by Sainsbury and colleagues concluded that the reduced quality of life in celiac disease is more strongly associated with depression than GI symptoms. The researchers recommended that celiac disease management should include the provision of psychological coping skills.9
“When we counsel celiac patients, we have to remember this is not just a dietary change,” Lee says. “We’re asking people to absolutely change the way they live. There’s no wiggle room in this diet. The good news is we can provide them with ways to make it easier.”
Educate Beyond Diet
A strong understanding of celiac disease and how to follow a gluten-free diet is essential for patients to improve their health, but counseling that goes beyond these basics can further increase compliance and improve well-being and overall quality of life.7 Smith recommends providing diet education that includes information on real vs perceived restrictions. “There’s a lot of misinformation out there,” Smith says. “I see patients unnecessarily eliminating grains like corn or rice because something they read on the Internet incorrectly said these foods contain gluten. Outdated information is a problem as well. Ingredients like maltodextrin and distilled vinegar were once thought to contain gluten but actually don’t. These unnecessary restrictions add to an already burdensome diet.” Geller adds coffee to the list of foods mistakenly thought to cause a cross-reaction in celiac patients. Smith says, “By keeping to an evidence-based approach, dietitians can bring down the level of fear in our patients.”
Be Positive and Empowering
Lee stresses the importance of being positive. “We need to teach patients to take charge of their diet and lifestyle,” Lee says. “You’re giving the client a prescription for health. This diet is going to change their life. We need to approach our counseling in a positive way. Instead of ‘don’t do this,’ say ‘you can do this.’ Now they have the opportunity to be healthy. For many people this is a different way of looking at a diet. This is a positive, healthful lifestyle that happens to be gluten-free.” The key to this positive thinking, Lee says, is empowerment. “Helping the client to feel in control is essential,” she says. “In addition to teaching them what foods they can’t eat, show them where to look in the supermarket for foods they can eat; tell parents about accommodations that are available by law at schools; show teens mobile apps that direct them to the nearest restaurant with a gluten-free menu, so that when friends want to grab a bite to eat the teen with celiac disease can take charge and lead the way.”
Foucek benefitted greatly from this type of approach in her nutrition counseling. “My RD provided perspective,” Foucek says. “She helped me see that you can find ways to be socially engaged without eating gluten. She also taught me how to be overprepared: If you know you’re going to a party or a game, do your research. Are there gluten-free options there? And don’t be afraid to tell your host what you need. She also helped me understand that I’m doing this to protect my body and save myself from other diseases and death. Understanding the long-term health benefits gave me more motivation.”
Modeling and role-playing can help foster this feeling of empowerment. Smith recommends modeling communication and assertiveness for patients. “Role play how they will order gluten-free at a restaurant or speak to family members about their dietary needs,” Smith says. “This brings about self-efficacy, a personal belief that they can do what needs to be done, and that leads to increased acceptance of the lifestyle, enhanced confidence, and improved compliance.”
Foucek found role-playing helpful for her personally, and also recommends involving the entire family. “My RD educated the whole family, even my seven-year-old sister,” she says. “Everyone in your life is affected by these lifestyle changes, and they all need to be educated and on board.”
Teenagers may present specific challenges. “When dealing with kids and teens, it’s developmentally typical for them to have times when they’re tempted to stray from the gluten-free diet,” Ryee says. “RDs can help teens make healthful choices by making sure they have really good knowledge and understand the impact of eating gluten, and by helping them build in supports at school, [during] activities, and in social situations. They’re all going to have their moments. Help them manage and cope with it instead of making the environment really punitive. But do watch out for particularly extreme behavior that warrants outside help.”
Link to Support
Support groups, forums, blogs, and social media outlets like Facebook and Twitter can be useful in helping people with celiac disease gain confidence and learn coping strategies.7 “Books and online resources can offer really helpful tips and tricks,” Foucek says, “plus support and inspiration from others going through the same thing.”
Research supports this idea. “Support increases quality-of-life scores,” Lee says, “but our research showed that face-to-face support groups work the best.”
According to Foucek, “when you meet other people, you form a bond with them. This is a very supportive community. People are eager to share their stories and what works for them.”
Lee recommends referring clients to celiac support groups and websites, and offering advice for accessing groups when they’re traveling. “Additionally,” says Lee, “we as dietitians have an opportunity to provide that face-to-face support and guidance to change quality of life and ultimately dietary adherence.”
Take a Team Approach
“Celiac disease isn’t just a dietary change, it’s a lifelong chronic illness that benefits from mental health care,” Smith says. “The RD should be part of an interdisciplinary team, communicating and participating with the primary care provider and gastroenterologist but also with mental health providers to manage health outcomes. Since we aren’t trained in mental health, we need to know when to refer to someone who is. Having a team approach makes this referral easier and helps to remove the stigma many people still attach to seeking mental health care.”
The team approach also helps when it comes to managing ongoing symptoms. “Many people with celiac disease have undiagnosed coexisting conditions like fructose or lactose intolerance, or small intestinal bacterial overgrowth,” Smith says. “They may be mistakenly attributing those symptoms to hidden gluten, leading them to eliminate extra foods, and increasing their burden, their fear, and their anxiety.” An RD is in the perfect position to spot a problem and work with the rest of the medical team to determine what action is necessary.
To facilitate this team approach and improve understanding of the medical and psychological factors of celiac disease, the Celiac Disease Foundation and the Children’s National Health System are developing a program to cross-train health care providers. “Children with anxiety and depression are seeing psychologists who are unaware that these may be symptoms of celiac disease. They’re too often diagnosed with ADD/ADHD, depression, and other psychosocial disorders long before their celiac diagnosis,” Geller says. “We’re creating print and digital materials as well as live programs to teach mental health professionals to recognize signs and symptoms of celiac disease, and to help primary care providers and others, including RDs, to recognize the psychosocial component of this disease and make referrals.” The program is set to debut at the Celiac Disease National Conference & Gluten-Free Expo April 30 to May 1, 2016.
Awareness of the psychological component of celiac disease, the emotional and psychosocial impact of diagnosis, and barriers to adherence to a strict gluten-free diet can help nutrition professionals improve their work with these patients. Coupled with appropriate referrals, empathetic counseling that empowers clients and gives them the tools they need to navigate their lives without gluten can greatly enhance not only dietary compliance but also the client’s quality of life.
— Judith C. Thalheimer, RD, LDN, is a freelance nutrition writer, a community educator, and the principal of JTRD Nutrition Education Services.
1. Hall NJ, Rubin G, Charnock A. Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. Aliment Pharmacol Ther. 2009;30(4):315-330.
- Lee AR, Ng DL, Diamond B, Ciaccio EJ, Green PH. Living with coeliac disease: survey results from the U.S.A. J Hum Nutr Diet. 2012;25(3):233-238.
- Sdepanian VL, de Morais MB, Fagundes-Neto U. Celiac disease: evaluation of compliance to gluten-free diet and knowledge of disease in patients registered at the Brazilian Celiac Association (BCA). Arq Gastroenterol. 2001;38(4):232-239.
- Barratt SM, Leeds JS, Sanders DS. Quality of life in coeliac disease is determined by perceived degree of difficulty adhering to a gluten-free diet, not the level of dietary adherence ultimately achieved. J Gastrointestin Liver Dis. 2011;20(3):241-245.
- Roma E, Roubani A, Kolia E, Panayiotou J, Zellos A, Syriopoulou VP. Dietary compliance and life style of children with coeliac disease. J Hum Nutr Diet. 2010;23(2):176-182.
- Zingone F, Swift GL, Card TR, Sanders DS, Ludvigsson JF, Bai JC. Psychological morbidity of celiac disease: a review of the literature. United European Gastroenterol J. 2015;3(2):136-145.
- Gentile C. Celiac disease and mental health. National Foundation for Celiac Awareness website. Updated October 8, 2015.
- Black JL, Orfila C. Impact of coeliac disease on dietary habits and quality of life. J Hum Nutr Diet. 2011;24(6):582-587.
- Sainsbury K, Mullan B, Sharpe L. Reduced quality of life in coeliac disease is more strongly associated with depression than gastrointestinal symptoms. J Psychosom Res. 2013;75(2):135-141.