Type 1 diabetes mellitus (DMT1) is a lifelong chronic disorder that occurs when the body is unable to produce enough insulin – a hormone that is required for carbohydrate metabolism. Patients must learn to manage their disorder by monitoring their blood sugar levels on a regular basis, carefully selecting the foods they eat and how much exercise they do. Before insulin was extracted and purified (at University of Toronto!), type 1 diabetes, which usually occurs in children and adolescents, would very quickly lead to death – the body, unable to take in the very thing it needs to survive.
Unfortunately, patients with type 1 diabetes are at increased risk of developing eating disorders or disordered eating behaviours. Diabulimia refers to an eating disorder in patients with DMT1 who reduce or skip insulin doses to reduce their weight.
The exact prevalence rates vary study by study, depending on the population sample, how disordered eating/EDs are defined and a multitude of other factors. But, nonetheless, some numbers are helpful.
Kelly et al provides a nice overview of the prevalence studies. I’ve summarized some below:
Quick Summary of Prevalence Studies of EDs/DEBs in patients with Type 1 Diabetes
- one study suggested that the prevalence of AN and BN in patients with DMT1 may be as high as 16% (Jones & Colton, 2002)
- another study found that out of 663 patients, 5.9% had an ED (Herpertz et al., 1998)
- study of 76 adolescents with DMT1 found that 40% of females “admitted to underusing insulin to control weight” (Bryden et al., 1999)
- comparing 89 female adolescents with DMT1 with age-matched controls showed that disordered eating behaviours (DEB) were present in amount 17% of DMT1 patients and only 2.2% (still high!) of the age-matched controls (Engstrom et al., 1999)
- in another study (143 adolescents), 38% of females and 16% of males reported unhealthy weight control practices, 10% admitted to skipping insulin while 7.5% to taking less insulin to control their weight (Neumark-Sztainer et al., 2002)
There are many reasons as to why EDs and DEBs are more prevalent in patients with type 1 diabetes. It could be that, in part, due to the restrictive and controlling nature of diabetes management. Larrañaga et al postulate about some of the other possibilities:
The association of chronic illness, such as type 1 diabetes, asthma, attention deficit disorder, physical disabilities and seizure disorders, with disordered eating behavior is well known. By controlling diabetes with insulin injections, many diabetics face a constant struggle with their weight. As insulin encourages fat storage, many people with type 1 diabetes have discovered the relationship between reducing the amount of insulin they take and their corresponding weight loss. It is well-known that adolescents with type 1 diabetes tend to exhibit increased difficulty in maintaining optimal weight and also are more inclined to be concerned about their weight than their non-diabetic counterparts.
The danger of skipping or reducing insulin doses are numerous. Here are just some that were outlines by Larrañaga et al (I’ve adapted – or “prettified” – the figure):
An 11-year follow up study of women patients with DMT1 found that those who restricted insulin had a three-fold increased risk of mortality. That is, the mean age of death for those that restricted insulin was 45, compared to 58 for those with normal insulin dosing (Goebel-Fabbri et al., 2008).
Treatment absolutely must consist of a multidisciplinary team including an endocrinologist of physician knowledgeable in diabetes management, a dietician (with an ED and/or diabetes training), psychologists, psychiatrists, and perhaps even a social worker, if necessary.
Treatment will, inevitably, vary from person to person, but, a multidisciplinary team really is a must as ED specialists may not be knowledgeable in diabetes management (unlikely, anyway) and physicians specializing in diabetes are unlikely to be aware of ED treatment, what to do, what to say (and NOT say), and so on.
Larrañaga concludes with an important message:
EDs in type 1 diabetic patients represent some of the most complex patient problems to be treated both medically and psychologically. Given the extent of the problem and the severe medical risk associated with it, more clinical and technological research aimed to improve its treatment is critical to the future health of this at-risk population.
I want to thank Claire (from Diabetes with Eating Disorders - I am assuming?) for suggesting this very important topic as a blog post idea. Fortunately, I have no experience with diabetes – as far as I know, no one in my extended family has suffered from it. So, I don’t know the reality of the day to day living with type 1 or type 2 diabetes. I want to bring the topic up on the table for discussion and I am – as always - very interested in what you have to say.
If you have DMT1 and DEB/EDs, what has your experience been like in seeking and receiving treatment?