Diabulimia and Eating Disorders: Understanding ED-DMT1 in Type 1 Diabetes

ED-DMT1, or insulin restriction in individuals with Type 1 diabetes (T1D), is a serious and potentially life-threatening eating disorder. Often referred to as “diabulimia,” individuals underdose or manipulate insulin to lose weight. With up to 39% of adult females with T1D restricting insulin, both healthcare providers and caregivers play a critical role in recognizing these symptoms and seeking specialized support early.

Type 1 diabetes & eating disorders

Eating disorders in diabetes mellitus Type 1 (ED-DMT1), often referred to as “diabulimia,” is an eating disorder where someone with& Type 1 diabetes (T1D) withholds insulin to lose weight.

Insulin restriction has been observed across all female age groups, from 2% in preadolescent girls to 15% in adolescents and up to 39% in adults.¹ While insulin restriction is a hallmark of ED-DMT1, individuals may also use other methods to facilitate weight loss, such as food restriction or purging.

Withholding insulin can be deadly, and since many of those with eating disorders are also unable to recognize the medical risks of their condition, ED-DMT1 is particularly dangerous. This lethality underscores the importance of parents and providers in identifying ED-DMT1 early.

Is restricting insulin to lose weight an eating disorder?

Restricting insulin to lose weight is an eating disorder. Even though providers might recognize ED-DMT1 as an eating disorder, patients might not acknowledge their behavior as an eating disorder since it doesn’t conform to what’s traditionally considered disordered eating behavior, like restriction or compensation.

How do patients with ED-DMT1 restrict insulin?

Individuals with ED-DMT1 may manipulate insulin using multiple methods. The goal of these behaviors? To control weight without being detected.

Intermittent omission

Total omission of insulin is deadly, so many of those with ED-DMT1 will instead intermittently omit insulin.² They might do this by:²

• Withholding insulin injections
• Turning off or not wearing their insulin pump
• Wearing their insulin pump but not inserting the catheter

Underdosing subcutaneous insulin

Those who use subcutaneous insulin may:²

• Use the prescribed amount of long-acting insulin once or twice daily, but decrease the dose of short-acting insulin
• Use the correct amount of short-acting insulin and underdose or omit long-acting insulin
• Underdose insulin on certain days as a response to binge eating, lack of exercise or difficult emotions

Underdosing with an insulin pump

Those with an insulin pump may:²

• Omit the basal rate, lower the number of units per gram of carbohydrates to be ingested or under correct for hyperglycemia
• Use insulin as prescribed when eating normally, but do not use insulin while binge eating as a form of purging

Disabling & diluting insulin

Those with ED-DMT1 may disable insulin by replacing or diluting it with an inert liquid, such as water or saline, or by heating the insulin vial to render it ineffective.²

Delaying insulin administration

The optimal time for dosing is shortly before a meal. Patients with ED-DMT1 may delay insulin use to help control their weight.²

Impairing absorption of insulin

Patients may inject or insert their catheter in a scarred or atrophied site (“dead spot”) on the skin to hinder absorption. They might also administer insulin too shallowly or too deeply. Since insulin needs to be injected into subcutaneous tissue, administering it into the skin or muscle instead can cause it to lose effectiveness.²

Medical Complications of ED-DMT1

Restricting insulin doesn’t just affect blood sugar; it can trigger a cascade of serious medical complications, from diabetic ketoacidosis to cardiac stress and dehydration.

Diabetic ketoacidosis

The biggest risk for patients limiting insulin is diabetic ketoacidosis (DKA), a potentially deadly complication. DKA occurs when there isn’t enough insulin for the body to use glucose for energy, leading to rapid fat breakdown. As the liver converts fat into ketones, they accumulate in the bloodstream, causing the blood to become dangerously acidic.

Acidic blood disrupts enzyme function, oxygen transport and metabolism, and ultimately can cause:

• Electrolyte imbalances
• Cardiovascular issues
• Brain swelling (cerebral edema)
• Diabetic coma
• Death

Hyperglycemia (high blood sugar)

Without insulin, people with T1D will become hyperglycemic. Glucose – the primary energy source for the body – will accumulate in the blood and be eliminated through urine, taking calories with it, essentially serving as a compensatory behavior. Without glucose to use as energy, the body instead burns muscle and fat for fuel, causing weight loss.

Dehydration

When someone with type 1 diabetes has uncontrolled blood sugar, they will urinate more frequently. As the body works to remove excess glucose from the bloodstream, urine production increases, which can lead to dehydration.

Tachycardia (rapid heart rate)

Increased urine production reduces blood volume. To maintain blood pressure and circulation, the heart beats faster to compensate for the lower blood volume.

Hyperglycemia also triggers a stress response, causing a release of adrenaline and other stress hormones which increase heart rate.

Warning Signs of ED-DMT1

Knowing the physical warning signs of ED-DMT1—like elevated A1c levels, fatigue, and weight loss—can help caregivers and providers intervene early.

A1c of 9+

A high A1c (glycated hemoglobin or HbA1c) is common in patients who are underdosing or withholding insulin. Without insulin, it’s impossible to regulate blood sugar, and a higher A1c result indicates higher average blood sugar levels.

Unexplained weight loss

Rapid or unexplained weight loss is another common sign in patients with ED-DMT1. Without glucose to use as energy, the body instead burns muscle and fat for fuel, causing weight loss.

Fatigue

Glucose is the body's primary energy source. When lacking or insufficient, cells are deprived of energy. This energy shortage leads to fatigue throughout the body.

Frequent urination

When someone is hyperglycemic, the kidneys work harder to filter out the excess glucose through urine, causing increased urination.

Identifying Patients with ED-DMT1

The Diabetes Eating Problem Survey - Revised (DEPS-R) is a diabetes-specific screening tool for disordered eating. This tool is particularly valuable for patients with T1D, because non-specific screening tools often yield elevated prevalence rates.³

Contributors to ED-DMT1

People with T1D may be more likely to struggle with anxiety and a negative body image, increasing the risk for eating disorders.

Diabetes management fatigue

When someone is diagnosed with diabetes, managing the disease is very focused on numbers, such as tracking A1C, blood sugar and carbs, while also dosing insulin. Controlling diabetes is also time-consuming, requiring meal planning, dietary restrictions and reading labels for ingredients. Together, these factors can also increase the risk of developing an eating disorder.

Anxiety

Diabetes management can also be a source of anxiety, with about 21% of youth with T1D being diagnosed with an anxiety disorder in childhood. Anxiety can contribute to poorer quality of life, self-management and glycemic control.¹Patients may struggle to cope with feelings of anxiety and instead rely on binge eating, self-induced vomiting and insulin restriction to cope.⁴

The thin ideal & negative body image

While the research on body image in those with T1D isn’t conclusive, studies suggest that those with T1D are more likely to suffer from body image issues, which may contribute to the development of an eating disorder.⁵ Patients may resort to restricting insulin to help them lose weight and fit the thin ideal.

While both males and females both struggle with negative body image, girls and women have a higher likelihood than boys and men. In female adolescents with T1D, body dissatisfaction was found to be positively correlated with diabetes distress, anxiety symptoms and depressive symptoms.⁵

BMI (body mass index) is another factor contributing to negative body image. Body dissatisfaction, shape concerns and eating concerns are higher in those with T1D living in larger bodies than those who are not.⁵

Medical Treatment for ED-DMT1

Treatment for ED‑DMT1 starts with medical stabilization, close monitoring of insulin administration, and gradually transitioning the patient back to self-management.

Medical Stabilization

Because of the high mortality risk associated with co-occurring T1D and a severe eating disorder that includes insulin manipulation, medical stabilization may be necessary. Alongside typical medical monitoring for an eating disorder, ED-DMT1 monitoring also includes:

• Consistent blood glucose monitoring
• Insulin administration

As well as monitoring:

• Hyperglycemia and hypoglycemia
• Fluid-acid based abnormalities

Insulin Administration

Patients with ED-DMT and a history of food restriction may refuse a meal or snack after insulin has been administered. In this case, providers should administer insulin after meals or snacks to avoid hypoglycemia.²

Diabetes Management

Providers should assume all responsibility for diabetes management at first, and then gradually allow the patient to resume their diabetes care by demonstrating the ability and willingness to manage their condition effectively and consistently.²

Getting Help for ED-DMT1

If you or your child are experiencing ED-DMT1, it is vital to seek medical care as early as possible. Without medical stabilization and monitoring, the medical complications can become severe and even life-threatening. Medical stabilization is the first step toward healing.

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References

1. Kinik, M. F., Gonullu, F. V., Vatansever, Z., & Karakaya, I. (2017). Diabulimia, a Type I diabetes mellitus-specific eating disorder. Türk Pediatri Arşivi, 52(1), 46–49. https://doi.org/10.5152/turkpediatriars.2017.2366
2. Mehler, P. S., & Andersen, A. E. (2022). Eating Disorders: A comprehensive guide to medical care and complications (Fourth Edition). Johns Hopkins University Press.
3. Young, V., Eiser, C., Johnson, B., Brierley, S., Epton, T., Elliott, J., & Heller, S. (2012). Eating problems in adolescents with Type 1 diabetes: a systematic review with meta‐analysis. Diabetic Medicine, 30(2), 189–198. https://doi.org/10.1111/j.1464-5491.2012.03771.x
4. Rechenberg, K., Whittemore, R., & Grey, M. (2016). Anxiety in youth with Type 1 diabetes. Journal of Pediatric Nursing, 32, 64–71. https://doi.org/10.1016/j.pedn.2016.08.007
5. Troncone, A., Cascella, C., Chianese, A., Zanfardino, A., Borriello, A., & Iafusco, D. (2021). Body Image Problems in Individuals with Type 1 Diabetes: A Review of the Literature. Adolescent Research Review, 7(3), 459–498. https://doi.org/10.1007/s40894-021-00169-y