EDIT: I want to apologize for an oversight in this blog entry. Shelly and I forgot to mention Diabulimia Helpline in our list of organizations that help raise awareness and support sufferers with type 1 diabetes and eating disorders. Diabulimia Helpline is the only non-profit in the US dedicated to “education, support, and advocacy for diabetics with eating disorders, and their families.” I also want to highlight some services that Diabulimia Helpline offers: “a 24 hour helpline available via (425) 985-3635, an insurance specialist to walk clients and/or their parents through the complicated world of getting insurance to cover eating disorders, and a referral service to help people find the treatment centers, doctors, therapists, and counselors that would be a good fit for them on their road to recovery.” – Sincerely, Tetyana
Type 1 diabetes (DMT1, or T1DM) is a lifelong disease often diagnosed in children or adolescents. Though causes of DMT1 are complex and not fully understood, it results from the body’s immune system destroying its own insulin-producing cells. This drastically lowers insulin levels and leads to high blood sugar (insulin is crucial for regulating blood sugar). If not managed properly, DMt1 can wreck havoc on the nerves, heart, and retina. The onset of DMT1 often results in dramatic weight loss. This is because without insulin the body cannot use glucose derived from food as energy. Instead, the body is forced to break down body muscle and fat. This initial weight loss often delights some DMT1 patients, as they can literally eat all they want and not gain weight.
Once diagnosed, DMT1 patients need regular injections of insulin to regulate their blood sugar levels. Unfortunately, since insulin promotes storing excess glucose as fat, a major side effect of insulin treatment is weight gain. This can result in major body dissatisfaction in some patients, who quickly realize withholding insulin injections can induce weight loss. This practice is called, informally, diabulimia, or, more preferably, ED-DMT1.
HOW PREVALENT IS DIABULIMIA?
It is estimated that between 30% and 40% of adolescents and young adults with diabetes skip insulin after meals to lose weight.
A survey of 356 females aged 12-19 with DMT1 found that threshold and subthreshold eating disorders were almost twice as prevalent in diabetics than their age matched controls. In diabetics, deliberate insulin omission was the most common weight loss behavior after dieting; in diabetics with an eating disorder, 42% reported insulin misuse at the time of screening.
In another 4-year follow-up study of 91 DMT1 girls aged 12-18 who were prescribed insulin, 45% engaged in binge-eating, 38% in dieting, 14% in insulin omission, and 8% in self-induced vomiting at baseline. These behaviours were even more common at follow-up when the girls were older and thus at a higher risk for eating disorders.
WHY DO DMT1 PATIENTS HAVE A HIGHER RISK OF DISORDERED EATING?
At the moment, comprehensive theory does not exist. Besides, the risks and causes are different for different individuals. However, several hypotheses have been proposed:
- Both DMT1 and EDs often affect adolescents and young adults.
- The cycle of initial weight loss and subsequent weight gain following insulin treatment may be psychologically overwhelming and difficult to tolerate.
- DMT1 patients undergoing insulin supplementation exhibit a trend towards higher body mass index than healthy individuals.
- DMT1 requires strict dietary constraints with an intense focus on food composition. Some DMT1 eat according to a preset dietary food plan rather than in response to hunger and satiety. This combination of food obsession and neglect of internal cues may contribute to dietary dysregulation.
- Omitting insulin is a simple weight loss strategy that any DMT1 patient can undertake.
CONSEQUENCES OF INSULIN OMISSION IN TYPE 1 DIABETIC PATIENTS
The combination of an impaired metabolism from DMT1 and an ED can be catastrophic. In the short term, reducing insulin increases the risk of dehydration, induces the breakdown of muscle tissue, and a leads to a higher risk of infections and fatigue. In the long term, diabetics with EDs have an earlier than expected onset of diabetes-related complications. These include:
- KIDNEY FAILURE: High blood sugar can overwork the kidneys, eventually resulting in kidney failure and the need for a kidney transplant.
- RETINA DISEASES: High blood sugar damages the walls of small blood vessels in the retina, which can lead to blindness. In fact, disordered eating status was more predictive of diabetic retina diseases when compared to the duration of diabetes, which is a well-established risk factor for microvessel complications.
- KETOACIDOSIS: Without insulin, the body switches to burning muscle and fat for energy. Ketones are produced as a product of fat metabolism, and together with extremely high blood sugar levels can bring down the pH of your blood. This is an extremely dangerous condition that can lead to diabetic coma and death. ED in DMT1 patients are associated with more frequent episodes of ketoacidosis.
- NEVER DAMAGE (NEUROPATHY): Nerves need blood vessels to provide nourishment. High blood sugar damages these vessels, which in turn leads to neuropathy.
Psychologically, DMT1 patients who frequently omit insulin also exhibit greater general and diabetes-related distress than non-omitters, increased anxiety regarding low blood sugar, poorer regimen adherence, and greater fears concerning the improvement of their diabetes symptoms (as this may lead to weight gain).
Finally, ED-DMT1 is associated with a high mortality. In a 12-year follow-up study, DMT1 patients with AN exhibited 36% mortality rate. In another 11-year study, insulin omission increased risk of death more than 3-fold in DMT1 patients after controlling for age and body mass index.
MANAGEMENT OF ED-DMT1
Little research has gone into evaluating the best approaches for treating patients with ED-DMT1. However, a multidisciplinary team of an endocrinologist, a nurse educator, a nutritionist with ED and/or diabetes training and a psychologist is considered the (ideal) standard.
It is agreed that diabetes treatment will most likely be ineffective without ED intervention. A combination of psychoeducation, counseling, and diabetes/nutrition management is probably the best approach.
For diabetes treatment, the focus should be on designing a less rigid approach in the insulin regime along with flexible meal plans that minimizes the amount of time spent on diabetes management. Educating the patient to differentiate between insulin-induced water retention and weight gain may also help tolerate weight gain.
For psychoeducation, some have suggested individual therapy may be superior to family therapy, as family members may not have adequately coped with their own feelings of grief. Finally, in cases where ED-DMT1 is comorbid with other disturbances as depression, anxiety, or substance abuse, a full psychiatric evaluation is required and pharmacological agents may be considered.
A FINAL WORD
In the last few years, organizations such as Diabetics with Eating Disorders and We Are Diabetes have helped increase awareness of diabulimia. Despite the fact that diabulimia is not considered an official diagnosis in the medical field, given the multifactorial aspect of diabulimia, identification and prevention of disordered eating behaviors may be the key to managing this dangerous combination. At the moment, clinical screening tools are not yet available, although a revised 16-item Diabetes Eating Problem Survey shows promise. Hopefully by increasing awareness, the medical society will construct a shame and stigma-free environment where ED-DMT1 patients can speak up and seek professional help.
[Side note: Shelly wrote this post and then realized I had done a post on diabulimia and actually cited some of the same papers. But this is a very important topic that is not given enough attention by mainstream sources, so I thought that it is been a long time since my diabulimia post in mid-September, and I didn’t want Shelly’s research and writing to go to waste. – Tetyana]
Alejandra Larrañaga, María F Docet and Ricardo V García-Mayor (2011). Disordered eating behaviors in type 1 diabetic patients World J Diabetes., 2 (11), 189-195 : 10.4239/wjd.v2.i11.189
Walker, J., Young, R., Little, J., & Steel, J. (2002). Mortality in Concurrent Type 1 Diabetes and Anorexia Nervosa Diabetes Care, 25 (9), 1664-1665 DOI: 10.2337/diacare.25.9.1664-a