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Eating Disorders in Type 1 Diabetes: Prevalence, Impact and Getting Help

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Written by: Rhonda Merwin

Did you know that young women with type 1 diabetes have almost a 2.5 times greater risk of developing an eating disorder than individuals without diabetes?1. Studies indicate that up to 30-40% of individuals with type 1 diabetes report disordered eating behavior with higher rates among female-identifying people.e.g.,2 In a longitudinal study of girls followed over 12 years, the cumulative probability of an eating disorder was 60% by age 253. While the reasons for this are not completely clear, the impact on longevity and quality of life is. Eating disorders are the 12th leading cause of disability of young women in United States and anorexia nervosa has the highest mortality rate of any psychiatric condition (barring opioids)4,5. In T1D, eating disorders are associated with taking less insulin than is needed, more hospitalizations, more episodes of diabetic ketoacidosis (DKA), early and severe diabetes-related medical complications and 5 times risk of premature death6,7. Data show that consequences for subthreshold eating disorders (disordered eating behavior that is a shorter duration or lower frequency than is specified for diagnosis) are not any less severe8

Increased awareness of the scope of the problem has led the American Diabetes Association to recommend routine screening for eating disorders9 and there has been an increase in funding for this research. This includes clinical trials examining what treatments work for whom. For example, a clinical trial funded by Juvenile Diabetes Research Foundation (JDRF) is currently underway. The trial has two clinical sites: Duke Health in Durham NC and Miriam Hospital in Providence RI. The goal of this research is to understand what treatments work for whom, so that evidence-based care can be offered to people in need. You can find more information about this trial and other clinical trials for T1D here [Clinical Trials for T1D, iACT Clinical Trial ListingJDRF Clinical TrialsADA Clinical Trials]. Additional resources for those with T1D who are struggling with mental health can be found here [JDRF Mental Health ResourcesADA Mental Health Resources].

Research shows that intervening on eating disorders early is associated with better prognosis 10. Some common signs and symptoms of an eating disorder include:

  • Significant distress about food, eating or weight 
  • Frequent weighing (more than once a week)
  • Severely limiting overall calories or carbohydrates
  • Avoiding insulin (giving less insulin than is needed, skipping doses)
  • Avoiding checking blood glucose 
  • Feeling out of control with eating
  • Eating in secret
  • Feeling fat
  • Repeated DKA episodes
  • Significant weight loss
  • Elevated HbA1c or significant swings in HbA1c (very high to very low)

While these are sometimes signs of eating disorders, they are not always, and may instead reflect distress about diabetes or other challenges in managing such a difficult chronic illness. 

If you or someone you know is struggling with disordered eating behavior, reach out. These problems are common. Things can get better. 

Outpatient treatment for any eating disorders should include the physician managing diabetes and overseeing weight, a diabetes-knowledgeable mental health professional and a nutritionist. For cases in which severe weight loss is involved, inpatient or residential treatment might be more appropriate. When considering this option, look for a program that has a specialty track for eating disorders in diabetes. For example, [HealthPartners & Park Nicollet,Eating Recovery Center]

If you are approaching someone you are concerned about, remember:

Eating disorders are often associated with secrecy, guilt or shame. Approach individuals with understanding, warmth, and compassion.   

Eating disorders are often ways of coping with other psychological distress. It is not just about looking good. People with eating disorders are suffering. Offer support. 

Even if someone with an eating disorder is not ready to receive treatment now, they might be later. Let them know you are there for them now if and when they want help.  

Rhonda M. Merwin, PhD is a Licensed Psychologist and Associate Professor at Duke University. She studies eating disorders and their development, treatment and prevention. Her current research is funded by NIH and JDRF, and she is the author of ACT for anorexia nervosa: A Guide for Clinicians.

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Rhonda Merwin PhD
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