Diabulimia- What is it Exactly?
Guest Post by: Kelly E. Walker, RD, LD- Castlewood Dietitian
Diabulimia is a term that refers to a co-occurring condition of which individuals with type 1 diabetes refuse to take their insulin or significant portions of their insulin as a means to lose weight. Omission of insulin causes the body to “purge” calories through glycosuria -the loss of glucose through the urine. This purging of calories can be significant especially if the individual restricts most of their insulin. The DSM-IV describes bulimia as, “Recurrent inappropriate compensatory behavior in order to prevent weight gain.” Diabulimia has yet to be added to the DSM as a recognized term, but efforts are being made for this. The DSM-V (out for purchase as of May 2013) has medication misuse as an added diagnostic criterion for the purging types of bulimia and anorexia.
To understand the complexity of diabulimia, we must first have a basic understanding of diabetes and the function of insulin. The pancreas is considered a glandular organ that produces very important hormones and enzymes that aid in the digestion and metabolism of our food. One of these important hormones is insulin. Type 1 diabetes is an autoimmune disorder where the body attacks the pancreas’ beta cells –the cells that produce insulin so it can no longer provide insulin for the body. Picture a lock and key. The “lock” is present on our cells (muscle cells, brain cells, and cells all over our bodies). These cells need energy in order to function and help us operate at our peak capacities. Without it, they starve and the body is forced to break down important tissues for energy. Insulin is the “key” and its job is to unlock the cell so that energy in the form of glucose can move from the blood stream into the cell. The body cannot tolerate having too much glucose in the bloodstream and it will attempt to “get rid” of these extra calories by spilling them into the urine and out of the body. Blood that is saturated with excess glucose cannot flow adequately to all the small blood vessels in the eyes, kidneys, and extremities. Long term effects of this may include diabetic retinopathy and loss of vision, dysfunction of the kidneys, and in extreme cases –loss of lower extremities due to this lack of blood flow. If blood levels of glucose stay too high for too long, the body is forced into a state called ketoacidosis. Ketones are the byproduct of fat being broken down for energy. These ketones are highly acidic and the body must also attempt to rid itself of these through the urine. Diabetic ketoacidosis is a medical emergency and must be treated in a timely manner. If not, it can lead to coma and even death.
It is shocking and scary to think about these potential consequences; however, there is usually a slow onset to major complications and people who struggle with diabulimia will endure high blood sugar symptoms for extended periods of time without feeling it will affect them long term. Education about type 1 diabetes usually involves a conversation about insulin “resulting in weight gain.” While this may be true at the initiation of an insulin regimen, it is due to fluid shifts in the body now that all the cells are getting fed appropriately. This usually tends to even out as insulin is given consistently and the body will find homeostasis (maintenance of equilibrium or stable state) once again. Unfortunately, individuals often hear “weight gain” and they become fearful of giving insulin if this will be the result. As it is true of most eating disorders, there is usually a point that those suffering will reach where it becomes too difficult to change behaviors on their own. It is important for medical professionals to educate those with diabetes early on about how the body works so they can get a clear picture of what happens when they don’t have “the key” –insulin and what the process might look like for their future with diabetes.
Shih (2011) found the prevalence of type 1 diabetes combined with eating disorders has been studied since the 1980s and in the past few years it has vacillated from 11 percent to 39 percent. It is likely that this may be significantly higher as those studied do not always return surveys and some withhold information regarding struggles during their interviews. Women with type 1 diabetes are about two and a half times more likely to develop an eating disorder than women without diabetes per Goebel-Fabbri (2013). Lastly, Shih (2011) also reported that depression affects 1 out of 5 adolescents with type 1 diabetes and can further complicate recovery for individuals suffering from diabulimia.
The following is a list of warning signs for diabulimia:
1. Consistently high hemoglobin A1c. The hemoglobin A1c (HgbA1c) is a blood test that people with diabetes are intended to have every three months. It indicates an average of blood sugars over a three month period of time. NOTE: because this is an average, people may be giving just enough insulin to keep from being dangerously high and may also be running low often leaving the average relatively normal or just slightly elevated. The American Diabetes Association recommends maintaining HgbA1c levels at or below 7.0% with that resulting in an average blood sugar around 154 mg/dL.
2. Poor or negative body image. There is no visual way to diagnose diabulimia as people struggling with this could be underweight, overweight, or within a normal weight range. However, these individuals express a high level of body focus and dissatisfaction. Focus also tends to be on weight loss regardless of where their weight range is.
3. Abnormal or disordered eating patterns. Behavioral eating patterns may be closely related to those struggling with bulimia nervosa: skipping meals, restricting volumes of food at meals, feelings of guilt or shame after eating foods such as sweets or foods high in fats, elimination of carbs, sweets, or fats, and binge behavior followed by severe restriction, extended amounts of exercise, laxatives, purging, and the restriction of insulin.
4. Avoidance of eating around others. Often individuals with diabulimia will prefer to eat alone and may make excuses to not eat with family members or friends. Hoarding food is another sign. As stated before when insulin is restricted the energy cannot get into the cells and the body sends out messages to eat more because the cells are starving. One might hoard food due to shame around feeling as though they need to eat more frequently.
5. Checking nutrition labels on foods. Some may become obsessed with counting calories, fat content, or carb content of foods. These individuals are likely to refuse or say “I don’t like” foods that are combination foods such as casseroles or mixed pastas because they cannot precisely calculate the calories, fat grams, or grams of carbs in these meals.
6. Weight that fluctuates or significant weight loss. This may be an indicator of disordered eating and consistent insulin restriction.
7. Compulsive or excessive exercising. Signs of this may include multiple forms of activity broken up throughout the day for extended periods of time or activity being used as a compensatory behavior after food or certain food types are ingested.
8. Resistance to going to the endocrinologist or diabetologist (diabetes doctor). The individual may find excuses or reasons why they cannot go regularly to see the doctor for fear they might receive a “bad” HgbA1c. This may induce the desire to report inaccurate data to the physicians or nursing staff as a means to detour the conversation of needing to take more insulin. To them this equates to weight gain.
9. Hyperglycemic symptoms. Hyperglycemia is “high blood sugar” and is often represented by increased thirst, increased urination, increased hunger, irritability, and sleepiness with difficulty to bring oneself to alertness.
10. Irregular menses or loss of menses. High HgbA1c levels are associated with irregular menses, amenorrhea (absence of menses), and delayed puberty and development.
11. Secretive blood sugar testing. Individuals may not test their blood sugars at all or may only test them in secret from loved ones and medical professionals. Statements like, “I already tested” or “I was fine” may be frequent as will aggravation or defensiveness when asked to check in the presence of someone else. People who struggle with this may exhibit manipulative behaviors as they check their blood sugars such as using different solutions to get readings on their monitors that seem more normalized instead of using their own blood.
Treatment of diabulimia must come from a multi-disciplinary approach. Essential team members are: an endocrinologist or diabetologist who is sensitive to the psychological components of the eating disorder, a registered dietitian or certified diabetes educator (CDE) with experience with eating disorders, and a psychotherapist with experience with eating disorders. Each of these individuals needs to be collaborative and communicative when prescribing and treating someone with diabulimia. All members must be open to spending time to educate the family and other supportive members of the person’s life. Some individuals may require an inpatient treatment for a period of time to narrow focus, stabilize, and start developing healthy eating and diabetes management patterns.
The focus must be taken away from weight and put on healthy lifestyle changes. Exercise must be encouraged as appropriate and only if overseen by physician and dietitian. Scare tactics do not work. Guilt trips do not work. Put downs or belittling does not work. Families and medical professionals need to find what positively motivates the person struggling and be able to encourage focus in these areas instead of being afraid of what might happen if they don’t follow a healthy regimen. Compassion and a drive for understanding the function of the behavior can really help all involved know where to start. Setting small goals that include immediate gratification are best. Remember treatment is a process and patience is vital. It takes time to develop healthy habits as we break down walls and move through layers of defensiveness and fear.
American Diabetes Association. (2013). Tight Diabetes Control. http://www.diabetes.org/living-with-diabetes/treatment-and-care/blood-glucose-control/tight-diabetes-control.html
American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders, (4th ed.) Washington, DC. American Psychiatric Association.
Carlin, F. (2008, August 7). Psychology Today. The danger of diabulimia: When diabetes and bulimia operate in tandem, patients face grave risks. http://www.psychologytoday.com/articles/200807/the-danger-diabulimia
Mohney, G., Goebel-Fabbri, A.E. (2013, March 8). AbcNews. Diabulimia: The dangerous way diabetics drop pounds. http://abcnews.go.com/Health/skipping-insulin-diabetics-find-dangerous-drop-pounds/story?id=18687005
National Eating Disorders Association. Diabulimia. http://www.nationaleatingdisorders.org/diabulimia-5
Shih, G.H. (2009, March 3). DiabetesHealth. Diabulimia: What it is and how to treat it. Retrieved from http://diabeteshealth.com/read/2009/03/02/6102/diabulimia-what-it-is-and-how-to-treat-it/
Shih, G.H. (2011). Diabulimia: What It Is and How to Treat It. Lexington, KY: Grace Huifeng Shih.