COMMENTARY

The 'Most Dangerous Eating Disorder': Diabulimia in T1D

Jessica Sparks Lilley, MD

Disclosures

December 17, 2019

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When I diagnosed 10-year-old Katie with type 1 diabetes (T1D), I told her that her excess weight and diet were unrelated to her diagnosis. But a few months later, her school teacher singled her out for having diabetes in front of the entire class while declaring that the childhood obesity epidemic is out of control. Sitting in that classroom as her classmates stared, she must have wondered whether her childish chubbiness was really to blame.

People living with diabetes are exposed to nearly constant scrutiny about their weight and diet. Even teachers and others in positions of authority, who should know better, criticize students about their weight or eating habits. Parents and patients of all ages grow weary of constantly being asked, "Should you be eating that?"

Yes, diabetes does require meticulous monitoring and accounting for every bite of food in order to ensure good glycemic control. But that very scrutiny may also be the start of a perfect storm that can lead to a dangerous relationship with food.

'I Just Want to Be Normal'

Even as diabetes technology improves, the sensors and pumps that are worn on the body are often difficult to completely conceal, especially when they alarm loudly and unpredictably.

One of my patients initially loved her continuous glucose monitor and the break it afforded her from sticking her finger four or more times daily. But when she was admitted to the hospital in diabetic ketoacidosis, she confessed that she had not been wearing it. She had tired of her classmates' constant questions about the device. "I just want to be normal," she whispered.

Every teen who can remember weight regain after diagnosis...will connect the dots: Insulin equals weight gain.

Another patient, a college student, rejected the insulin pump that had helped her achieve excellent glycemic control after she got into a serious relationship—the pump was unwelcome during romantic interludes.

Many adolescents are willing to accept the risks associated with skipping insulin to avoid the comments and stares of their friends.

And it's not just the visible devices that can make a teen feel different. These kids also face unique difficulties with weight control, and no teen wants to be perceived as carrying excessive weight. But the triple challenges of diabetes—the need to eat when not hungry to correct low blood sugars, an increased risk for hypothyroidism, and insulin resistance—can all cause unwanted weight gain.

The Most Dangerous Eating Disorder

With these considerations in mind, warning bells about disordered eating and body dysmorphia should be ringing for every clinician encountering teens with T1D. People with T1D are 2.5 times more likely to develop an eating disorder compared with the general population, with almost 30% of adolescents with T1D meeting diagnostic criteria for an eating disorder. And more than one third of young women with diabetes admit to at least occasional insulin omission.

What makes eating disorders in the setting of T1D particularly terrifying is that omitting insulin even while continuing a relatively normal diet can nonetheless lead to fairly rapid weight loss. Every teen who can remember weight regain after diagnosis and beginning treatment or weight loss during periods of hyperglycemia will connect the dots: Insulin equals weight gain.

Teens with T1D and obesity are even more likely to engage in insulin omission to prevent weight gain or perhaps promote weight loss. One study showed that more than half of adolescent girls with T1D and a body mass index in the obese range engaged in disordered eating behavior.

The issue often is associated with girls, but boys also develop eating disorders, especially those whose weight is monitored closely because of sports, such as wrestlers. Sixteen percent of boys with T1D have disordered eating behavior, compared with 1 in 400 boys without diabetes.

Anorexia nervosa is seven times more fatal in people with T1D than in the general population. Even worse, people with T1D and eating disorders have a mortality rate that is 17 times that seen in others with T1D. Though not recognized by the DSM-V, this condition is colloquially known as "diabulimia" and has been called the "most dangerous eating disorder."

Know the Signs

Unwelcome scrutiny from well-meaning but less knowledgeable friends and family is not helpful and may contribute to eating disorders. On the other hand, physicians and parents need to be aware of and watch for the true warning signs of disordered eating.

Early detection is crucial. Warning signs include rapid weight loss, increasing hyperglycemia, and hospitalizations for diabetic ketoacidosis. Missed insulin doses or manually lowered basal rates and suspensions can be detected on pump downloads. Inspecting the entered daily carbohydrate intake can expose both restrictive and binge eating.

More subtle signs of an eating disorder may include low albumin, increasing hypoglycemia from missed meals combined with a too-high basal insulin dose, and growth arrest. Classic signs of anorexia nervosa and bulimia cannot be forgotten, including amenorrhea, callouses on fingers, and tooth enamel erosion.

Chronic starvation potentiates the known risks associated with sustained hyperglycemia. Diabetic neuropathy is made worse by vitamin deficiencies. Gastroparesis is seen with anorexia nervosa and bulimia but is exacerbated by poor glycemic control. Bone loss, a known consequence of disordered eating, is compounded by poor nutrition, hypothalamic amenorrhea, and autonomic neuropathy caused by T1D.

Restricting insulin causes rapid loss of water weight, which may reinforce the behavior, but dehydration is particularly taxing to the kidneys, especially when combined with the hyperglycemia that accompanies insulin deficiency.

Astute clinicians and concerned parents must bear in mind the significant risk for disordered eating and insulin omission in teens living with T1D. Recognition requires walking a fine line between tuning in to worrisome signs while simultaneously not body shaming or calling out an overweight teenager. Body-positive language, creating a healthy culture around food, and diligent supervision are especially important for this high-risk group.

The treatment of eating disorders is a difficult, frustrating, often stutter-step journey in any adolescent. Treating these disorders in the context of T1D is more demanding by an order of magnitude. Starting treatment as soon as possible secures the best outcome, which makes timely recognition critical.

For more information, please see the Diabulimia Helpline.

Jessica Sparks Lilley, MD, is the division chief of pediatric endocrinology at the Mississippi Center for Advanced Medicine in Madison, Mississippi. She became interested in pediatric endocrinology at a young age after seeing family members live with various endocrine disorders, including type 1 diabetes, Addison disease, and growth hormone deficiency.

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