Sara was diagnosed with type 1 diabetes at 11 years of age. She successfully managed the condition until age 15 years when, body conscious and worried that she was overweight, she discovered a secret after accidently skipping her insulin: She lost weight.
So began her struggle with "diabulimia," a downward spiral of binge eating; withholding insulin; and becoming increasingly ill, including being hospitalized several times. Normally an honest person, Sara learned how to beat the system to maintain the appearance of taking care of her diabetes by lying to her family and her endocrinologist about deliberately restricting her prescribed insulin.
By the time she came to our eating disorder treatment center, her A1c level was 14%. After several months of intensive treatment, during which she learned how to eat intuitively, unravel the eating disorder, and properly take care of her diabetes, her A1c is 7.2%, close to the goal of less than 7%.
A New Name for Linked Disorders
Independently, eating disorders and diabetes are challenging enough to manage, but the combination of these disorders can be devastating. Several years ago, it became apparent that a significant number of people with eating disorders also had type 1 diabetes, and they were using insulin restriction as a tool for weight loss. This disorder has since been dubbed "diabulimia,"—a nickname for eating disorder-diabetes mellitus type 1 (ED-DMT1), which is not yet included in the Diagnostic and Statistical Manual of Mental Disorders as a diagnosis.
Restricting insulin leads to very high blood glucose levels, potentially resulting in ketoacidosis as an acute complication and much earlier onset of blindness, renal disease, cardiovascular disease, and neuropathy as chronic complications. But people who restrict insulin cannot think clearly and thus may be less likely to worry about the damage they are doing to their bodies, and in turn less likely to seek help.
Eventually it catches up with them, however. When they finally seek help, people with diabulimia often are suffering, both physically and mentally. As with Sara, many have been hospitalized repeatedly for diabetic ketoacidosis, have very poor metabolic control, and have started to experience the long-term degenerative complications of diabetes.
Signs of Diabulimia
Unfortunately, many clinicians who treat people with diabetes may not realize that some of these patients may have an eating disorder. At least 30%-40% of young women with type 1 diabetes already have or will develop an eating disorder. Although diabulimia is less common in men, when it does occur, it is just as destructive.
The following warning signs point to the possibility that a patient has diabulimia and needs special help:
- Poor metabolic controlwith hyperglycemia or elevated A1c levels despite reported compliance;
- Maintaining or losing weight despite eating more food;
- Recurrent hospitalizations related to diabetic ketoacidosis;
- Lapses in blood glucose testing, or failure to bring glucometers or records to appointments;
- Fear of hypoglycemia and the feeling of low energy or feeling "down";
- Long stretches between appointments, to avoid being lectured about poor blood glucose control;
- Scale avoidance;
- Dry skin and loss of hair;
- Classic symptoms of diabetes—excessive urination, extreme thirst, constant hunger; and
- Classic symptoms of eating disorders—excessive exercise, fatigue, weakness, lethargy, being overly critical of appearance, amenorrhea.
Approaching a patient whom you suspect may be purposefully restricting insulin can be a delicate situation. As with all eating disorders, the person is likely to become defensive. If a clinician suspects that a patient is restricting insulin to lose or maintain weight, it is best to come from the position of sincere concern for the person's health and well-being, without accusation or judgment.
Multidisciplinary Approach to Treatment
Once someone has been diagnosed with diabulimia, successful treatment takes time and a multidisciplinary team of specialists. If the person is willing to get help early enough, he or she may be able to turn things around by working with an endocrinologist, a certified diabetes educator, and an eating disorder specialist as an outpatient. If outpatient treatment is not successful, residential treatment may be necessary.
Regardless, treatment requires education combined with medical and mental health interventions. Treating the diabetes without treating the eating disorder, or vice versa, is like putting a Band-Aid on a bullet wound. Targeted intensive therapy focused on both the diabetes and the eating disorder is critical to long-term success.
Medical treatment is aimed at bringing blood sugar down to normal levels gradually to avoid serious complications, and moving the patient toward more balanced eating patterns that include three meals and two snacks a day. Nutrition education is essential to help patients understand how food fuels their bodies and how insulin is vital. In our clinic, we teach clients how to become intuitive eaters, which involves reconnecting with hunger and satiety cues to guide food choices.
Simultaneous treatment of diabetes and an eating disorder is complex; thus, people with diabulimia need to receive professional help for both conditions, including working with a certified diabetes educator. With this kind of support, Sara learned to eat intuitively, effectively manage her diabetes, and trust her body. She has vowed to never skip her insulin again. She recently went on a cruise, ate freely, took her insulin as prescribed, and felt confident enough to spend much of the time wearing a bathing suit.
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