Over 1.5 million Americans have type 1 diabetes, according to the American Diabetes Association (ADA). That includes 187,000 people under the age of 18. The ADA also estimates that 30-40% of adolescents with type 1 diabetes will develop an eating disorder at some point in their lives. Young women with the disease are about twice as likely to develop an eating disorder as their peers who do not have diabetes.
In the day-to-day management of type 1 diabetes, insulin is required to keep the body’s blood sugar at healthy levels. Paying close attention to diet, in particular carbohydrates, and checking blood sugar throughout the day are also essential steps to managing the disease. As a result, weight fluctuations are common in individuals with diabetes.
It makes perfect sense that people who live with type 1 diabetes often become hyper-focused on numbers. There are insulin dosages, blood sugar counts, carbohydrates, and weight to monitor constantly. Particularly for young people, this pressure can be difficult to handle, and it sometimes results in intentionally restricting insulin dosage — or even eliminating it completely — to control weight. This dangerous condition is known as diabulimia.
What Is Diabulimia?
Diabulimia can best be defined as an eating disorder in which people with type 1 diabetes restrict their insulin intake to lose or manage weight. Insulin is an essential hormone that enables cells to absorb glucose and convert it into energy. In type 1 diabetes, the body doesn’t produce enough — or in some cases, any — insulin. Without it, glucose remains in the bloodstream and spikes blood sugar levels, causing a host of health issues ranging from mild stomach aches to permanent vision and nerve problems.
Individuals with type 1 diabetes take insulin regularly to help the body absorb glucose. When the body doesn’t have sufficient insulin, it begins to break down muscle and fat stores and glucose is expelled from the body through urine, resulting in weight loss. People with diabulimia intentionally restrict their insulin intake to achieve this.
The History of Diabulimia
Don’t be surprised if you’ve never heard of diabulimia. Interestingly, despite sometimes being referred to as ED-DMT1, or Dual Diagnosis of Eating Disorder and Diabetes Mellitus Type 1, diabulimia is not a medically recognized term. It’s not formally recognized by the American Psychiatric Association as an eating disorder, though it is widely known in the medical community to be a serious condition. The term is thought to have originally been coined by the media.
The first known occurrences of diabulimia weren’t reported until the 1980s, directly contributing to why there is still little known about the condition or any co-occurring disorders today. Diabulimia’s vague presentation of symptoms also factors in. Because the body’s glucose levels fluctuate dramatically, an individual with diabulimia may have totally normal or only slightly abnormal readings at any given appointment. This leads to frustration in the medical community, but also a lack of understanding and significant research as well.
Risk Factors for Developing Diabulimia
Because relatively little is known about diabulimia, there is also limited data on who’s most at risk for developing it, aside from those with type 1 diabetes. We do know that diabulimia is believed to be severely under-diagnosed, so it is likely far more prevalent than we realize. There is no clear evidence on when diabulimia typically develops, as the diagnosis can come any time at all after an initial diabetes diagnosis.
Studies conducted over the past two decades show that people aged 13-60 are affected by diabulimia, but like with all other eating disorders, females are far more likely — 2.4 times more, to be exact — to develop it than males. About 17% of males with type 1 diabetes exhibit diabulimia behaviors, while nearly 40% of females do.
Adolescents who experience diabetes burnout are also far more likely to develop diabulimia. Diabetes burnout is the frustration with, and subsequent negligence of managing type 1 diabetes. In general, young people who have negative attitudes towards their medical conditions are more likely to exhibit disordered eating behaviors.
Diabulimia Warning Signs
Many of diabulimia’s symptoms are extremely similar to that of low insulin levels, so it can be difficult to accurately diagnose. However, there are several common symptoms. If you see someone you know exhibiting more than one of these behaviors, it may be an indication that it’s diabulimia.
- Frequent or prolonged negligence of diabetes management
- Extreme changes in diet
- Secretive eating habits, such as skipping family meals and choosing to eat alone
- Abnormal or irrational fear of low blood sugar levels
- Avoidance of discussion about diabetes management
- Extreme or sudden concern with body image
- Making excuses to avoid going to diabetes-related appointments
- Sudden, increased sleepiness
- Testing and/or injecting insulin levels in secrecy
- Social withdrawal, such as skipping extracurricular activities or choosing not to spend time with friends
- Obsession or preoccupation with food and/or weight
- Sudden increase in the frequency or intensity of exercise
- Depression or anxiety
Physical Warning Signs
- Increased thirst
- Frequent urination
- Unexplained or sudden weight loss
- Frequent nausea and/or vomiting episodes
- A1C levels that are inconsistent with meter readings
- Consistently registering A1C levels of 9.0 or higher
- Frequent diabetic ketoacidosis (DKA) episodes
- Constant or pronounced fatigue or lethargy
- Abnormally dry skin, nails, or hair
- Blurry vision or frequent complaints about not being able to see
- Irregular or absence of menstruation cycle
- Increased frequency of yeast and/or bladder infections
The Dangers of Diabulimia
One of the scariest things about diabulimia is that it’s the combination of two very serious and potentially life-threatening conditions. On their own, diabetes and eating disorders of all types are associated with numerous health issues and complications. When type 1 diabetes is being poorly managed or neglected altogether, the affected individual is at increased risk for all of its potential problems, including cardiovascular issues, impaired vision, gum disease, and nerve damage in the extremities, to name just a handful.
Individuals with diabulimia are also more prone to DKA, which is the result of the body burning fat too quickly. DKA “episodes” often involve a lengthy hospital stay following severe dehydration, bacterial infections, muscle atrophy, and peripheral neuropathy.
Diabulimia exacerbates all of the known problems associated with type 1 diabetes and individuals typically experience them much earlier in life than they would have otherwise — if at all. For example, someone with diabulimia in their thirties may suffer from osteoporosis, kidney failure, and chronic heart problems.
A person with diabulimia is also likely to experience serious nutritional deficiencies and directly-related consequences. Severe chemical and electrolyte imbalances are common, which often lead to organs beginning to shut down and ultimately failing completely. The numbers on this are staggering: Diabetes has a 2.5% annual mortality rate and anorexia nervosa has a 6.5% mortality rate. Diabulimia has a mortality rate of 34.8% annually.
Getting an accurate diabulimia diagnosis is tricky for several reasons. Individuals with diabulimia may become skilled at hiding their disorder, blaming their symptoms on having low blood sugar levels or forgetting to take their insulin. Even when several symptoms are present, many doctors conclude that the diabetes is being poorly managed rather than the fact that there may be an underlying eating disorder. This goes back to the fact that little research has been done on diabulimia, and there is limited understanding of it even by medical professionals. If you or someone you know has diabulimia, you will need to advocate strongly for more extensive testing to be done to receive an accurate diagnosis.
In cases when diabulimia is diagnosed, there are still some difficulties. Diabulimia does not have an official medical diagnostic code, so it is often assigned based on the disordered eating behaviors present. For example, insulin omission is technically classified as a behavior associated with purging, so if the individual is severely limiting the intake of both food and insulin, the disease may be diagnosed as anorexia nervosa. If the person is binge eating and then restricting insulin intake, it may be diagnosed as bulimia nervosa.
Because of this, a multidisciplinary team comprised of both medical and mental health professionals is crucial to getting a proper diabulimia diagnosis.
Diabulimia and Co-Occurring Health Conditions
The numbers show us that individuals with type 1 diabetes, in particular adolescent females, are more likely than their peers to have mental health conditions. Bulimia is just one of many eating disorders someone with type 1 diabetes may have, but there are other conditions as well, including anorexia nervosa and binge eating disorder. Anxiety, depression, bipolar disease, and obsessive-compulsive disorder are other issues commonly associated with type 1 diabetes.
For these complex reasons, it is essential to have a team of professionals who are knowledgeable about and experienced in treating diabetes and eating disorders. Diabulimia treatment goes far beyond managing basic medical and nutrition issues.
Although early and accurate diagnosis tremendously improves the success of the recovery process, Diabulimia treatment comes with unique challenges. Unlike treatments for other co-occurring disorders, solutions for diabulimia must address the specifics of both the eating disorder and diabetes.
NEDA explains that successful treatment outcomes for individuals with diabulimia are less likely than for patients with other eating disorders. Type 1 diabetes patients also have a significantly higher treatment dropout rate. This is likely because the affected individual has such a complex relationship with food and insulin.
Because of the many complex underlying issues associated with diabulimia, it is of the utmost importance that it be properly diagnosed and treated by the right team of medical professionals. This includes doctors experienced in managing type 1 diabetes and eating disorders, as well as mental health experts and nutritionists.
Aside from professional treatment, research indicates that individuals with diabulimia have far greater success with treatment when they have a strong support system. A 2018 study of 11 blogs written by individuals with diabulimia evaluated numerous posts published between 2012 and 2017 and found overwhelming evidence of this. A solid interpersonal network plays a critical role in helping those with diabulimia recognize triggers and improve their diabetes management, leading to a stronger likelihood of recovery.
Treatment solutions for diabulimia at Monte Nido include:
- Cognitive Processing Therapy (CPT)
- Evidence-based treatments such as Dialectical Behavioral Therapy (DBT) and Cognitive Behavioral Therapy (CBT)
- A combination of individual, group, family, and multi-family therapies
- A focus on whole-self balance, including medical, metabolic, and nutritional needs
- Concurrent psychiatric and medical evaluation and monitoring
While much more research and data are needed to make significant gains in diabulimia diagnosis and treatment, you don’t have to wait to start your recovery process. There are excellent solutions in practice at Monte Nido today. If you or someone you know is dealing with diabulimia or any co-occurring disorders, contact Monte Nido today. Call us at (888) 228-1253 or contact us online today. We look forward to being a part of your journey to full recovery.