February is National Eating Disorder Awareness Month so I thought it was a good time to shine the light on the high prevalence of people with type-1 diabetes and an eating disorder. This will be my first post in a series of 4 on this specific topic (I will have a guest blogger one week to share her personal experience).
In this blog I will give you a broad overview of this specific dual diagnosis…
What is ED-DMT1?
The dual diagnosis of an eating disorder and type 1 diabetes is often referred to as “diabulimia,” however this is not a medically recognized term and it is not an accurate description. This syndrome is termed among healthcare professionals as “ED-DMT1,” which represents this dual diagnosis in an individual with type 1 diabetes. Note: “DMT1” refers to diabetes mellitus type 1. For clarity, “type 1 diabetes” will be spelled out in this article in place of the abbreviation “T1D.”
ED-DMT1 describes the intentional misuse of insulin for weight control. This could be caused by decreasing the prescribed dose of insulin, omitting insulin entirely, delaying the appropriate dose, or manipulating the insulin itself to render it inactive. Any of these actions can result in hyperglycemia (high blood glucose levels) and glucose excretion in the urine, which causes weight loss. So, in a sense, calories are “purged” this way, which is where the term diabulimia stems from. However, a person suffering from ED-DMT1 may not be diagnosed with bulimia or have any symptoms of bulimia such as binge eating and self-induced vomiting. On the other hand, some individuals may only withhold insulin after they have binged (whether it be a true binge or just a larger-than-typical amount of food) as a method of purging. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors—or they may only manipulate their insulin and otherwise have normal eating patterns.
How many people in the United States have ED-DMT1, and who is at highest risk?
It is unclear exactly how many people in the United States have ED-DMT1. What is a striking statistic is the percentage of people who have type 1 diabetes who also have an eating disorder or disordered eating. “Eating disorder” refers to abnormal eating habits that may involve either insufficient or excessive food intake to the detriment of a person’s health, such as anorexia nervosa or bulimia nervosa. “Disordered eating” refers to a wide range of irregular eating behaviors that do not warrant a diagnosis of a specific eating disorder.
Also alarming is the rate at which treatment centers are seeing more and more cases of people with ED-DMT1 who have become ill to the point of requiring intervention at the inpatient, residential, or partial hospitalization levels of care.
The statistics vary slightly from study to study and depending on the criteria used, but in each case the numbers are quite high. A study by Patricia Colton, M.D., a psychiatrist at the Eating Disorders Program at Toronto General Hospital, found that 7-35% of girls and women with type 1 diabetes met the criteria for what is termed a “sub-threshold” eating disorder, meaning they display symptoms of an eating disorder but may not meet the full criteria. In that study 0-11% met the criteria for a full-syndrome eating disorder. These are pretty dramatic numbers when you compare them to the non-diabetic population. Rates in the general female population vary from 1-2% for bulimia nervosa and 0.5-1% for anorexia nervosa. It’s been reported that girls with type 1 diabetes are twice as likely to be diagnosed with an eating disorder compared to their non-diabetic peers.
So we see that people with type 1 diabetes are at a much higher risk of developing an eating disorder than the non-diabetic population. Women appear to be at higher risk than men, and the pre-teen and teen years are a particularly vulnerable time.
Another unfortunate but important concern for this group of patients is the increased mortality risk that they experience. In one study, the risk of death for the dual diagnosis of ED-DMT1 was 17-fold compared to type 1 diabetes alone and seven-fold compared to anorexia nervosa alone. This is alarming and a reflection of the real risk brought about the co-existence of these two diagnoses. Serious and premature complications of type 1 diabetes and a significantly increased risk of premature death make the dual diagnosis of ED-DMT1 a very serious condition. In summary, complications for those with ED-DMT1 can be divided into acute and chronic complications of insulin deficiency and hyperglycemia. The acute complications include polyuria, polydipsia, weight loss, and DKA. The chronic complications are related to diabetic microvascular disease often affecting the eyes, the kidneys, and the heart, and peripheral neuropathy.
I find it fascinating that an eating disorder is rooted in much deeper issues then just external appearance. There’s a misconception out there that the only form of insulin manipulation is decreasing or not taking it at all. I found on the web an article that stated, “There are people who actually overdose their insulin in order to run blood sugars low, or to exert extremely tight control. The eating disorder can look different from individual to individual. It is important to note that as in the case with other eating disorders, the dual diagnosis of ED-DMT1 affects people of all ages, both genders, all socio-economic statuses, races, and ethnicities.”