By Amy Jones, MS, RD, LD

Maddie is 16 years old and is worried about her weight. She’d like to lose at least 10 pounds. It seems like all her friends are on diets. She also has bloating and diarrhea after she eats. Her mom takes her to the doctor who diagnoses Maddie with celiac disease. She is told to go on the gluten-free diet. Suddenly Maddie is even more concerned about what she is eating. She finds she is spending almost all her time thinking about food and weight. Is this a healthy way to live?

In the U.S., an estimated 20 million women and 10 million men develop an eating disorder (i.e. anorexia, bulimia) at some point in their life. And even more people struggle with extreme dissatisfaction with their bodies, and exhibit disordered eating behaviors and attitudes. We know that eating disorders have many causes and triggers, including genetics, media pressures to be thin, frequent dieting, and low self-esteem. Research also shows that having a chronic medical condition (like celiac disease) may also increase your risk of an eating disorder.¹

There has been a lot of research on the relationship between Type 1 diabetes and eating disorders (for example, people with Type 1 diabetes intentionally not using insulin properly as a method to help control weight). But much less has been written about the direct relationship between celiac disease and eating disorders. In 2007, Dr. Daniel Leffler and his colleagues at The Celiac Center at BIDMC reviewed 10 case reports of patients who were diagnosed with celiac disease and had a history of or a current eating disorder.² For many of these patients, it was difficult to remain compliant on the gluten-free diet for fear of weight gain. A 2008 study published by Dr. Karwautz and colleagues found that teens diagnosed with celiac disease were at an increased risk for eating disorders, possibly because of the increased focus on food that the gluten-free diet requires, which then led to extreme preoccupation with food.³ The gluten-free diet can also lead to unwanted weight gain, and this too, can be a risk factor in the development of disordered eating behaviors.

While it is normal to feel some anxiety about food and eating, especially on the gluten-free diet, it is important to be aware that the risk of eating disorders may be higher in those with celiac disease.

According to Dr. Leffler (personal communication, February 26, 2013): “Celiac disease can exacerbate, precipitate or otherwise complicate eating disorders. Healthcare providers specializing in eating disorders should keep celiac disease in mind, especially if their patients have a history or family history of autoimmune diseases.”

So, what are the signs and symptoms of eating disorders that you may notice in yourself or in a loved one? From the National Eating Disorders Association:

Warning signs of anorexia nervosa:

• Dramatic weight loss
• Preoccupation with weight, food, calories, fat grams, and dieting
• Frequent comments about feeling fat or overweight
• Denial of hunger
• Loss of menstrual periods
• Excessive, rigid exercise regimen, despite weather, fatigue, illness or injury
• Withdrawal from usual friends and activities

Warning signs of bulimia nervosa:

• Evidence of binge eating, including disappearance of large amounts of food in short periods of time or finding wrappers and containers indicating the consumption of large amounts of food.
• Evidence of purging behaviors, including signs/smells of vomiting, presence of wrappers/packages of diuretics or laxatives. In persons with celiac disease, this may include intentionally consuming gluten-containing foods to induce diarrhea or vomiting.
• Unusual swelling of the cheeks or jaw area
• Discoloration or staining of teeth
• Creation of lifestyle schedules or rituals to make time for binge/purge sessions
• Excessive, rigid exercise regimen, despite weather, fatigue, illness or injury

Warning signs of eating disorders not otherwise specified (EDNOS)

• Any of the above warning signs for anorexia nervosa, but the individual’s current weight is in the normal range or above. Menstruation is still occurring despite meeting all other criteria for anorexia nervosa.
• Any of the above warning signs for bulimia nervosa, but purging or other compensatory behaviors are occurring at a frequency less than the criteria for bulimia nervosa. Chewing and spitting out large amounts of food but not swallowing.

Eating disorders require professional help; they do not get better on their own. If you suspect a loved one has an eating disorder or is exhibiting behaviors that concern you, set a time to talk about your concerns with them. Share specific instances when you were concerned about their eating behaviors, indicating that these behaviors could indicate a problem that needs attention. Ask them to consider talking with their doctor, dietitian or counselor about their concerns. Try to avoid saying things like “You just need to eat,” or “You are not acting responsibly.” Use “I” statements, like “I am concerned because you are refusing to eat dinner.” Continue to be supportive, even if your loved one doesn’t want to admit there is a problem. Remind them that you care and will be there for them now and in the future.

February 24th-March 2^nd is National Eating Disorders Awareness Week. For more information, visit the NEDA website at www.nedawareness.org. To access the NEDA Information and Helpline (available 9am-5pm EST, M-F, call 1-800- 931-2237.

About Amy Jones, MS, RD, LD

Amy Jones, MS, RD, LD, has been a dietitian for more than 11 years. She facilitates the Logan County Celiac Support Group in Bellefontaine (which she founded in May 2010) and also consults one-on-one with those with celiac disease and gluten intolerance.

In 2011, Amy was honored to be named one of “10 Dedicated Dietitians Who are Making a Difference” by Today’s Dietitian magazine. She has completed additional training in celiac at the University of Chicago Celiac Disease Center. She also completed the GREAT dietitian training program from the National Foundation for Celiac Awareness.

References:

1. Neumark-Sztainer D, Story M, Falkner NH, Beuhring T, Resnick MD. Disordered eating among adolescents with chronic illness and disability: the role of family and other social factors. Arch Pediatr Adolesc Med. 1998 Sep;152(9):871-8.
2. Leffler DA, Dennis M, Edwards George JB, Kelly CP. The interaction between eating disorders and celiac disease: an exploration of 10 cases. Eur J Gastroenterol Hepatol. 2007 Mar;19(3):251-5.
3. Karwautz A, Wagner G, Berger G, Sinnreich U, Grylli V, Huber WD. Eating pathology in adolescents with celiac disease. Psychosomatics. 2008 Sep-Oct;49(5):399-406.