Girls and women with type 1 diabetes (T1DM) are almost 2.5 times as likely to develop an eating disorder as those without diabetes(1). In order to understand why this might be, one must first understand the complexity of T1DM and the unique symptom of insulin restriction. Recently, this phenomenon has been referred to as “diabulimia” in both the popular press and by those who are struggling themselves.
I have a love-hate relationship with the term. My love comes from the knowledge that having a name has given women who struggle an actual voice. They have something to call it and something to describe. Also, if something has a name, then they can’t be the only ones with the problem. This awareness is a huge step forward as it brings with it the possibility of decreasing shame and possible secrecy. My hate, which is too strong a word, comes from several angles. First, the “bulimia” part of the word runs the risk of implying that only people who binge have this problem. What I’ve seen in my practice is that eating disorders of all kinds occur in the context of T1DM. I think of them as falling on a continuum—people can exclusively restrict food and calories, they can restrict both food and insulin, they can eat normally and restrict insulin, they can binge and restrict insulin, they can use other means of purging, or they can binge without purging. This leads to my second problem with the term, which is that it seems to oversimplify the problem taking all these nuances and fitting them into one entity. The reality is that all eating disorders in the context of T1DM are complex, tormenting, and dangerous and all deserve access to appropriate treatment.
With that said, the remainder of this article will focus on the problem of insulin restriction, since up to 30% of girls and women reporting restricting insulin at some point in their lives(3).
Eating disorders in T1DM
As you know, the classic symptoms of T1DM are profound thirst, and frequent urination, and rapid weight loss. Once appropriate insulin treatment begins and glucose levels return to a healthy range, the body rebuilds itself and weight gets restored.
It’s possible that this weight restoration leads to some girls and women incorrectly learning, “Insulin made me fat.” However, the reality is that insulin allowed their bodies to heal. Another possible contributor is that T1DM treatment itself involves close attention to the connection between blood glucose levels, insulin requirements, and food portions—especially carbohydrates. In fact, old messages about the nutrition management involved having to avoid “bad foods” that contained sugar. Today, most patients are taught that all foods can fit into a healthy meal plan, but black-and-white thinking about eating continues to be a common struggle. This can mirror the rigid food rules of eating disorders.
There are many similarities between eating disorders in patients with and without T1DM. However, girls and women with T1DM have a unique and powerful purging symptom which can also be lethal. Insulin restriction, meaning under-dosing or omitting necessary insulin doses, intentionally induces high blood glucose levels and calorie purging through urine. Weight loss happens just as it does prior to T1DM diagnosis. Research shows that up to 30% of girls and women with T1DM report restricting insulin doses at some time in their lives (2, 3). This does not mean that these patients all have formal eating disorders—severity ranges from sporadic behavior all the way to clinical eating disorders. Even at subclinical levels, however, eating disorders are associated with higher rates of diabetes complications, such as kidney, nerve, and eye disease. These complications occur at shorter disease duration and at younger ages than is seen in the typical T1DM population (3-5). On top of the chronic and preventable risk of complications. Diabetic ketoacidosis (DKA) is an acute, potentially fatal medical crisis that is far more common in the context of insulin restriction and eating disorders (2, 3). It is possibly one of the reasons why patients who endorse insulin restriction have a higher risk of early death (6). The most important thing is that just like chronic complications of T1DM, acute medical risks like DKA can be prevented with appropriate insulin use.
Much research has focused on the phenomenon of insulin restriction, eating disorders, and T1DM and associated medical consequences. There is still little known about how to best treat this problem.
Recommendations for both T1DM and eating disorders highlight the importance of a treatment team: endocrinologist, nurse educator, dietician, psychologist, and psychiatrist. However, it is hard to find mental health providers who understand both T1DM and eating disorders. I recommend starting with the diabetes team to see who they have worked with in the past and who they might recommend. The next referral source can be your primary care doctor. There are also excellent websites that can help you find providers who understand both conditions. Even if the mental health provider does not know T1DM, they must know eating disorders. I would also insist that all treatment team members communicate regularly, so the mental health providers can learn what they need to learn about T1DM, and so all team members have similar goals. Finally, the patient has to be the person on the team who controls what she is ready to change first and at what pace. You must work with a team where you feel respected and where you feel a sense of trust.
The most important message is this: We know that patients with T1DM and eating disorders can and do recover. There is realistic hope for this very important women’s health issue.
Signs that you or a loved one may be struggling with an eating disorder in diabetes:
- Noticeable changes in eating patterns—either restricting food much of the day, binge eating, hiding food, or all of the above.
- Changes in weight and/or preoccupation with weight and body shape.
- Increased exercise.
- Secretiveness about blood glucose, not monitoring blood glucose, and/or unusual elevations in blood glucose.
- Changes in typical A1c ranges—either very low (more typical with anorexia symptoms) or very high (more typical with insulin restriction and/or binge eating).
- Unexplainable diabetic ketoacidosis (DKA).
Resources for accessing help:
1. Jones JM, Lawson ML, Daneman D, Olmsted MP, Rodin G. Eating disorders in adolescent females with and without type 1 diabetes: cross sectional study. BMJ. 2000;320(7249):1563-6.
2. Daneman D, Olmsted M, Rydall A, Maharaj S, Rodin G. Eating disorders in young women with type 1 diabetes. Prevalence, problems and prevention. Hormone Research. 1998;50(Supplement 1):79-86.
3. Polonsky WH, Anderson BJ, Lohrer PA, Aponte JE, Jacobson AM, Cole CF. Insulin omission in women with IDDM. Diabetes Care. 1994;17(10):1178-85.
4. Rydall AC, Rodin GM, Olmsted MP, Devenyi RG, Daneman D. Disordered eating behavior and microvascular complications in young women with insulin-dependent diabetes mellitus. New England Journal of Medicine. 1997;336(26):1849-54.
5. Williams G, Gill GV. Eating disorders and diabetic complications. New England Journal of Medicine. 1997;336(26):1905-6.
—Ann Goebel-Fabbri, PhD, Psychologist, Joslin Diabetes Center; Assistant Professor of Psychiatry, Harvard Medical School