Diabulimia: A Life-Threatening Approach to Thinness

By Kathryn E. Ackerman, MD, MPH and Tarin E. Jackson

People living with type 1 diabetes mellitus (DM) are taught to be conscious of the foods they eat. They decide their dose of insulin shots based on how many carbs they eat. This focus on food can become obsessive. People who have type 1 DM and are fixated on their body image are at risk for eating disorders similar to anorexia nervosa and bulimia. “Diabulimia” [dye-a-byoo-LEE-mee-uh], an unofficial, non-medical term that combines “diabetes” and “bulimia,” describes the condition that results from omitting or reducing insulin doses to lose weight.

Insulin is a hormone that the body needs to metabolize food, specifically sugar (glucose). People with type 1 DM do not make insulin. As a result, their cells cannot use glucose and will “starve” unless insulin is injected. When the body cannot use glucose for energy, it begins to break down fat. This causes acid byproducts called ketones [KEE-tones]. Glucose is lost in the urine and fat is burned, leading to rapid weight loss. However, if the ketones and blood sugar levels continue to increase, the person’s life will be in danger from extreme dehydration and acidosis, known as diabetic ketoacidosis [KEE-toh-ass-i-DOH-sis] (DKA).

Diabulimics often try a dangerous balancing act. They purposely skip some insulin doses to lose weight, while trying to avoid DKA. They may lie about their blood sugar levels, skip A1c checks, and use other means to hide their high blood sugars. Diabulimics often feel weak, cannot concentrate, and become thirsty. But even if diabulimics don’t develop DKA or the symptoms of poor blood sugar control, over time they will be at high risk for diabetic complications. These complications include kidney damage, blindness, and heart disease, and the person could even die a premature death.

Patients with type I DM are often diagnosed as children or adolescents. The diagnosis might be made after they have lost a lot of weight and been sick for a while. Once the patient has better insulin control, he/she might gain weight while adjusting to a new diet and insulin regimen.

No matter when diabetes starts, learning how to manage it is a lifelong process that continues throughout adulthood. It is especially hard to be diagnosed with diabetes as a teenager, when one wants to be accepted by their peers and are trying to “fit in.” Girls, in particular, often have body image issues at this age. People living with type 1 DM often feel burdened by their chronic illness and perceive themselves as being “different”. However, unlike most teens, those with type 1 DM have a dangerous weight loss tool: insulin. Many patients who omit/restrict their insulin are even at a healthy weight, but they see themselves as overweight. Others may be overweight and feel that the only way to lose pounds is by not taking or restricting their insulin. This is an extremely dangerous way to lose weight and can be harmful to one’s health and well-being.

Prevalence and Consequences of Diabulimia

In a study by Ann Goebel-Fabbri, PhD, 30% of women with type 1 DM reported restricting their insulin to lose weight at some point in their lives. These patients had higher rates of kidney disease and foot problems than patients who didn’t restrict their insulin, and they were 3.2 times more likely to die over the 11-year study period.

Girls with Type 1 DM are twice as likely to develop an eating disorder compared with their non-diabetic peers. Getting young people with DM to meet others with the disease through organizations and camps can be helpful to gain disease acceptance and coping strategies. But parents and counselors need to be aware of teens sharing bad information and glorifying the perceived “benefits” of diabulimia with one another, an unfortunate trend in some group settings.

Symptoms of Diabulimia:
Below is a list of some of the warning signs of diabulimia:

  • Elevated A1c levels
  • Blood sugar records that do not match A1c results
  • Unexplained DKA episodes
  • High blood sugar levels
  • Excessive thirst or frequent urination
  • Yeast/bladder infections
  • Unexplained weight loss or weight gain
  • Depression, low self-esteem, low energy, fatigue, anxiety, or irritability
  • Discomfort with eating or taking insulin in front of others
  • Preoccupation with body image, weight, or food intake
  • Cancelling of medical appointments

Exercise as a Better Strategy for Weight Management:

According to Dr. Goebel-Fabbri, “Insulin restriction = calorie purge, which is a symptom of an eating disorder.” There are several ways to maintain a healthy weight and/or lose weight when living with type 1 DM. The key tools in maintaining a healthy weight or losing weight as a patient with diabetes is diet, exercise, and most importantly, control of blood sugar.

Exercise has many benefits for the body and helps improve one’s sense of well-being. Maintaining or achieving control of blood sugar while exercising can be tough. Each patient with diabetes should speak with his/her endocrinologist [en-doh-kri-NAH-low-jist] about exercise and find out which activities are safe to do. The patient should be aware that complications such as eye, nerve, foot, heart, artery, and joint problems, and not monitoring blood sugar will have a bearing on what exercise is safe. It might be helpful for people with type 1 diabetes to see a nutritionist and/or exercise physiologist [fiz-ee-OL-oh-jist]. The more varied the exercise program is, and the more challenging exercise goals are, the more difficult it can be to manage sugar levels during exercise.

The impact of exercise on blood sugar levels depends on several things: fitness level, food intake prior to activity, the intensity and duration of exercise, recent blood sugar(s), and how long, how much, and what type of insulin was taken before exercise. Finally, sustained regular exercise often reduces overall insulin requirements, allowing motivated people with type 1 DM and a good exercise regimen to decrease insulin in a healthy way.

Treatment Plans for Diabulimia

Often patients require inpatient treatment if they have signs of DKA. Inpatient and outpatient treatments are most effective with a team approach. The team should be comprised of an endocrinologist, psychiatrist/psychologist, exercise physiologist, and registered dietician. A program promoting healthy eating habits, an improved body image, and exercise can then be tailored to the specific needs of each patient with type 1 DM. The goal is to shift the focus away from weight and toward a healthy body with controlled blood sugars. As with any individual living with diabetes and any person without diabetes who has suffered from an eating disorder, a “diabulimic” requires continued education, resources, and emotional support to help with his/her disease. Friends, family, and medical providers need to be aware of the struggles of diabulimia and recognize the signs and symptoms. Diabetes, eating disorder, and addiction support groups can be of use, as well.

Resources:
www.diabetes-exercise.com
www.joslin.org
www.centerforhopeofthesierras.com
www.nationaleatingdisorders.org
www.sugapak.com

Dr. Kathryn E. Ackerman is a Harvard Medical School Instructor of Medicine, a clinician at Children’s Hospital Sports Medicine and researcher at Massachusetts General Hospital in the Neuroendocrine Unit. Trained in internal medicine, sports medicine, and endocrinology, she’s a team physician for US Rowing and serves on the Board of Directors of the Diabetes Exercise and Sports Association (DESA).

Ms. Tarin E. Jackson is a Pharmaceutical Sales Representative and Founder of www.sugapak.com. She has had type 1 diabetes for 18 years and is a member of the Diabetes Exercise and Sports Association (DESA).