Diabulimia: Why Type 1s Are at Risk and How You Can Help

Our culture has a complicated relationship with food and body image. The National Eating Disorder Organization reports that that by age 6, girls start to express concerns about their weight. Young adults with diabetes are at a higher risk of developing an eating disorder.

drawing of a person with who sees them self as bigger in a mirror than they actually areAdolescent females with type 1 diabetes are 2.4 times more likely to develop an eating disorder compared to their peers without diabetes. Studies show up to 30% of women report omitting insulin to lose weight, a condition coined by the media and known as diabulimia. (Photo:123rf)

Eating disorders come in many forms including anorexia, bulimia, binge eating disorder, orthorexia along with disordered eating behaviors like laxative abuse and compulsive exercising to burn calories. Here’s what you should know if you live with type 1 diabetes or are the parent of a child who does.

What You Should Know about Diabetes and Bulimia

Diabetes can set the stage for developing an eating disorder because of the unique aspects of type 1 diabetes management such as the constant emphasis on food, carb counting, and body awareness. Adolescent females with type 1 diabetes are 2.4 times more likely to develop an eating disorder compared to their peers without diabetes. Studies show up to 30% of women report omitting insulin to lose weight, a condition coined by the media, known as diabulimia.

Individuals with diabetes are at higher risk of struggling with emotional issues including, anxiety, poor body image, depression, and body dissatisfaction. According to Susan Weiner, Registered Dietitian and 2015 AADE (American Association of Diabetes Educators) Diabetes Educator of the Year “The demands of type 1 diabetes, in addition to the expectations from the person managing the condition and advice from often well-meaning health care professionals, and family members can lead to psychological and emotional challenges and blood sugars they are expected to keep up with all day, every day” says Weiner who currently sits on the AADE board of directors.

No other condition forces you to think about every single bite of food, calculate grams of carbohydrates, portion sizes, then type 1 diabetes. “The guilt and shame associated with not achieving certain target blood glucose levels can be overwhelming for individuals with type 1 diabetes, explains Weiner author of The Complete Diabetes Organizer and Diabetes: 365 Tips for Living Well.

The deadly combination of an eating disorder with type 1 diabetes leads to an early onset of complication such as retinopathy, nephropathy and even death. Creating a healthy relationship with food and a positive body image from a young age has never been more critical. Awareness and screening of disordered eating patterns and negative body image need to start at the time of diagnosis.

The Link Between Diabetes and Eating Disorders

Both diabetes and eating disorders create a very conscious state of food that is “good” food vs. “bad” food. Individuals with diabetes need to pay close attention to their diet and are forced to become body aware because of the need to give injections or use external devices like insulin pumps or sensors on their bodies. 

Parents of children with diabetes can often be restrictive with food or avoid giving specific foods like “sweets” which can then lead to a greater desire for them. This may lead to, well-meaning parents becoming the food police. Additionally, the constant talk or “nagging” about food can result in the opposite effect.  Because of these unique aspects of type 1 diabetes management, youth with diabetes may lose the capacity to eat intuitively and therefore develop a negative relationship with food. All of which can lead to a vicious cycle of emotional eating and body dissatisfaction.

Could Your Child Be at Risk?

Diagnosing eating disorders in youth with diabetes can be difficult because diabetes is a complex condition. One of the first clues to having an eating disorder is losing weight.  But it’s important to note; not all individuals will embody the same symptoms.

People suffering from this dual disorder of type 1 diabetes and an eating disorder may exhibit any number of disordered or obsessive eating disorder behaviors (binge eating, orthorexia which is a fixation on healthy eating, purging, starvation, etc.), says Weiner. In some cases, hypoglycemic episodes can trigger individuals with diabetes to binge eat. Other common signs will be elevated blood sugars which could be an indication of insulin omission. 

Symptoms of Diabulimia

Other symptoms of an eating disorder include:

  • Poor metabolic control despite saying they are compliant
  • Less checking or unwillingness to bring meter or logs to doctors visits
  • Dry skin or hair loss
  • Talking about weight or the body more frequently
  • Exercising a lot
  • Fruity breath (sign of ketoacidosis)
  • Avoidance of scales
  • Loss of periods (amenorrhea)

What You Can Do

Diabulimia is a media-coined term that is not official-recognized as an eating disorder by the American Psychiatric Association in the group's Diagnostic and Statistical Manual of Mental Health Disorders, or DSM (currently in the fifth edition). 

This dangerous combination first appeared in a series of case studies in 1980. Since then, there is a heightened awareness among healthcare professionals and families. Clinical consensus guidelines have been published, but more research is still needed on this topic.

Diabulimia is a psychological disorder that should be treated as such. A multidisciplinary team approach is essential to the treatment of both the eating disorder and diabetes and can include an endocrinologist, psychologist, diabetes educator, registered dietitian, a social worker. 

Nonprofits such as We Are Diabetes, as well as Diabulimia Helpline, provide support to people with type 1 diabetes and their loved ones who struggle with eating disorders. They offer a 24-hour helpline, online support groups and even a Diabuddy mentoring program for those struggling.

Words Matter

Parents, physicians, and family members need to be aware that insulin omission is serious and far more common than reported.  How we speak about our bodies as well as the appearance of others also matters.  Family members should avoid using derogatory terms like “fat,” “obese” or even make food a villain.  Instead, the focus should be placed on the child’s health. Emphasize how strong their body looks; how well they played in the basketball game and the role nutrition—food as nourishment for our bodies.
We know, weight management is a challenge for many people with diabetes. Seeking the expertise of a registered dietitian (RD)/certified diabetes educator (CDE) early in the diagnosis is vital in discussing weight-related issues, best foods and strategies for managing weight loss and nutrition.

As a CDE as well as a person living with type 1 diabetes, I firmly believe T1D management needs to encompass the emotional and the physical side of health. Type 1 diabetes is never just about controlling blood sugars; it far more than that. It is a condition that affects all aspects of life: weight, mood, food, energy, stress and more for the rest of our lives.

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Updated on: August 14, 2019
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The Dangers of Diabulimia: What Every Type 1 Needs to Know