When you manipulate type 1 diabetes to keep the pounds off, you may be living with a condition known as diabulimia.

Living with type 1 diabetes comes with plenty of challenges. If left unmanaged, it can even be life threatening.

Unlike type 2 diabetes, type 1 cannot be influenced by diet and lifestyle. However, weight management might be recommended by a doctor for other reasons like co-existing obesity.

Type 1 diabetes can cause weight loss in some people. Diabulimia occurs when someone intentionally manipulates insulin to lose weight.

While you may have heard of diabulimia, you won’t find it in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5).

In the medical community, diabulimia is known as eating disorder-diabetes mellitus type 1 (ED-DMT1). In the DSM-5, it would be a type of eating disorder — which type would depend on other symptoms.

Manipulation of insulin is considered a form of purging behavior. When it occurs alongside binge eating, it might be classified as bulimia nervosa. It might be diagnosed as anorexia nervosa if it’s accompanied by severe dietary restrictions and intense exercising.

If the manipulation of your insulin is done alone to manage your weight, it would be classified as “other specified feeding and eating disorder” (OSFED).

When you live with type 1 diabetes, diabulimia occurs when you deliberately restrict your insulin intake to lose weight.

Because your body doesn’t properly produce insulin in type 1 diabetes, it relies on you to supply it from outside sources.

By restricting your insulin intake, your cells start putting out the signal they’re starving. This causes the body to pull energy resources from fat and muscle tissue to make up the deficit, resulting in weight loss.

Diabulimia can affect anyone but is most commonly reported in women. According to the American Diabetes Association, approximately one third of women living with type 1 diabetes report deliberate insulin restriction.

This condition is primarily seen in young people between the ages of 15 and 30.

Diabulimia behaviors often partner with other disordered eating patterns, such as bingeing, purging, or food restriction.

There’s no singular cause of diabulimia.

Like other eating disorders, it can be a complex mix of contributing factors, such as:

  • genetics
  • family history
  • personality predispositions (such as perfectionism)
  • cultural pressure
  • stress
  • trauma

Research in 2020 indicates some common factors can contribute to diabulimia, including:

  • weight management
  • coping with a diabetes diagnosis
  • past trauma
  • unsupportive relationships

A 2015 study suggests that living with type 1 diabetes and an eating disorder may be associated with other co-existing mental health conditions, like depression or anxiety. However, this study involved self-reporting and was small, with only 98 participants.

While each person’s condition will feel and look unique to them, there are signs and symptoms specific to diabulimia and others that may overlap with other mental health conditions and eating disorders.

Signs and symptoms that are unique to diabulimia may include:

  • restrictive insulin use
  • a lack of concern toward insulin regularity
  • excessive fears of low blood sugar
  • false beliefs that insulin causes obesity
  • secrecy surrounding diabetes management
  • discomfort when testing sugar levels in front of others, or avoiding injections around others
  • hemoglobin A1C testing levels of 9.0 or higher (indicates high levels of blood sugar)
  • hemoglobin A1C testing levels that are inconsistent
  • diabetic ketoacidosis (DKA)

What might someone with diabulimia say?

  • “I’ve put on so much weight since starting insulin therapy!”
  • “Don’t worry, I take my insulin when I know I need it.”
  • “I already ate lunch. I’ll meet you after you’re done.”
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Other emotional and behavioral signs and symptoms include:

  • social withdrawal, especially when eating
  • frequent dieting or dietary restrictions
  • restrictive thinking or rules about food, body image, or weight
  • fixation on body image or foods
  • excessive exercising

Other physical signs and symptoms might include:

  • changes in hair and skin texture
  • irregular reproductive cycle
  • vision changes
  • urinary tract infections
  • nausea or vomiting
  • unexplained weight loss
  • persistent thirst
  • low blood sodium or potassium levels
  • fatigue
  • sleep difficulties

Diabulimia can be difficult to diagnose. When you’re deliberately restricting your insulin, or completely omitting it, you may be fully aware of what you’re doing and not want to seek help.

Eating disorders can also bring about feelings of guilt or shame. This can make it feel even harder to seek treatment, even when you do want support.

Even if you believe you or someone you know may have diabulimia, only a healthcare or mental health professional can accurately diagnose an eating disorder.

A medical professional can review your symptoms, signs, and lab results to see if you meet the criteria of an eating disorder or ED-DTM1.

By most diagnostic standards, eating habits become “disordered” when they cause severe levels of distress and disrupt your regular daily functioning.

Diabulimia can have both long- and short-term effects on your physical and mental health.

Possible short-term effects of diabulimia may include:

  • impaired wound healing
  • severe dehydration
  • yeast infections
  • bacterial infections
  • muscle atrophy
  • electrolyte imbalances
  • diabetic ketoacidosis

Long-term health effects can include:

  • blindness or permanent eye damage
  • nerve damage in the extremities
  • delayed gastric emptying
  • nervous system malfunctioning (i.e., a sudden drop in heart rate or blood pressure)
  • chronic intestinal issues (diarrhea or constipation)
  • heart, liver, or kidney damage

Over time, the effects of diabulimia on the body may even lead to severe life threatening conditions, such as:

  • stroke
  • coma

A 2013 research review reports that eating disorders in people with diabetes, particularly those related to insulin omission, are associated with an increased rate of death due to complications.

A word about diabetic ketoacidosis (DKA)

DKA is more common for people living with type 1 diabetes, compared to type 2 diabetes.

It occurs when a lack of insulin causes your body to breakdown fat for fuel. The liver — which is responsible for this fat breakdown — creates a byproduct called ketones.

Too many ketones in your system all at once can cause your blood to become acidic, leading to coma or even death.

DKA can happen at any stage of diabulimia, and can be considered both a short- and long-term effect.

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Depending on your needs and how diabulimia has affected you, support may come from a diverse treatment team.

A healthcare professional can support you in managing proper insulin dosing. If you’re experiencing effects of having long-term high blood sugar, you may also see an endocrinologist, dietitian, and eye specialist.

As a type of eating disorder, support from a mental health professional with experience treating eating disorders can also make a big difference.

Psychotherapy interventions can help address the underlying causes. You can also learn to identify unwanted behaviors while developing new coping tools.

If your physical or mental health have put you in a state of extreme distress, you may benefit from a recovery stay in a medical setting until your condition is considered stable.

Diabulimia isn’t always about a desire to be extremely thin. Sometimes weight gain from diabetes treatment can feel disheartening, almost like taking a step backward.

If you experience an eating disorder while living with type 1 diabetes, you’re not alone. There are many people who have shared experiences and can offer support.

If you or someone you know is living with diabulimia and would like to learn more, you can call the Diabulimia Helpline at 425-985-3635 or find help through the Diabulimia Support Group.

You can also find help and support by calling or texting the NEDA helpline at 800-931-2237. They also have an online chat option.

If you’re experiencing a medical emergency, help is available by dialing an emergency number like 911.