How can health care professionals help patients with diabetes and an eating disorder?
Disordered eating behaviors are common among individuals with diabetes and can have devastating effects for diabetes management, while diagnostic threshold eating disorders such as anorexia nervosa, bulimia nervosa, and binge eating disorder may affect up to 20% of all people who have diabetes. Rhonda M. Merwin, PhD, addresses the links between diabetes and disordered eating, the signs of eating disorders, and how health care professionals can support patients with diabetes who are affected by eating disorders.
Q: What types of eating disorders occur in people with diabetes?
A: Eating disorder behaviors occur on a continuum and may involve
- severe dietary restriction, such as severely limiting calories or eliminating essential macronutrients from one’s diet
- objective binge eating, which involves eating an unusually large amount of food in a short period of time while experiencing feelings of being out of control
- subjective binge eating, during which a person feels loss of control but doesn’t necessarily eat large quantities of food
- other maladaptive weight control strategies, including restricting life-saving insulin to try to lose weight
Even though subjective binge eating may not lead to excessive food intake, it is important because people may omit their insulin or engage in other maladaptive weight control strategies if they feel out of control in their eating, even if they didn’t really overeat or binge.
As far as eating disorder diagnoses, bulimia nervosa, which involves cycles of binge eating and maladaptive weight control, tends to be more common in type 1 diabetes. In type 2 diabetes, we see more binge eating without purging behaviors, and night eating syndrome—getting up in the middle of the night to eat. Anorexia nervosa is the least common eating disorder but has an extremely high mortality rate when it occurs in individuals with diabetes. Individuals with anorexia nervosa are very restrictive in their eating, causing them to lose weight and maintain dangerously low weight.
Q: How common are these eating disorders in people with diabetes?
A: Eating disorder prevalence in diabetes can be tricky to estimate. It can be difficult to determine what level of preoccupation with eating and weight is necessary for diabetes management and what is excessive and indicates an eating disorder. Disordered eating also occurs on a continuum, so there is the question then, when does behavior cross over into an eating disorder? However, it is important to note that even disordered eating behavior that is infrequent, or doesn’t meet full criteria for an eating disorder, can have severe consequences in people with diabetes.
Most studies of eating disorder prevalence have focused on young adult women who have type 1 diabetes, and they find that 30% to 40% of these individuals are affected by eating disorders. If you include other age groups and men, eating disorders affect about 20% of all people with type 1 diabetes, which is much higher than the general population.
A recent systematic review estimated that binge eating disorder affects 1.2% to 8% of people with type 2 diabetes, with similar estimates for night eating syndrome, but some estimate it is as high as 20%. The prevalence of binge eating disorder in diabetes is also likely to be underestimated due to guilt and shame that keeps people from reporting these problems.
Q: What are the links between diabetes and eating disorders?
A: In patients with both diabetes and an eating disorder, the diabetes usually comes first when it is type 1, but the reverse may be true for type 2, with an eating disorder such as binge eating potentially contributing to the development of the disease.
Most obviously, diabetes may increase risk for an eating disorder by increasing attention and monitoring of food, eating, and weight. This preoccupation can become a bit of an obsession—particularly if people think they have to be perfect in their diabetes management.
However, there is also a morality issue here. We as a society tend to describe foods and eating in evaluative or moral terms — as “good” or “bad.” People with diabetes may feel particularly judged by other people for their food choices and may judge themselves as well. This can spawn disordered eating, such as eating unhealthy foods in secret.
Some people may try to manage diabetes with rigid rules about what they can and cannot eat. This can trigger the abstinence violation-effect. This is when people who have a rigid rule and then break it react by overeating. So, if they have a rule about “no cookies” and then eat a cookie, they’re more likely to eat several. They promise themselves that they will not have any cookies the next day, and the cycle continues. The solution is to not have rigid rules, but flexible guidelines, and probably some kindness or self-compassion for perceived mistakes.
People with type 1 diabetes might also have the expectation that they can completely control their blood sugar, and if they haven’t, that this is a personal failure; when in reality, blood sugar is influenced by a multitude of factors such as stress and illness, and even when people take insulin as prescribed, blood sugar might be out of range. Some people feel like if their blood sugar is high, they have failed or lack control over themselves or their eating. These leads some people try to gain control in maladaptive ways, or some people think, “If I can’t control my diabetes, at least I can control my weight,” and then do that in unhealthy ways.
People with diabetes can also develop distrust of their body and their body cues. They may feel as though they can’t trust their hunger or satiety, or they may have had frightening experiences of hypoglycemia or hyperglycemia that lead to attempts to control their blood sugar by overeating or undereating. In this way, diabetes distress, which refers to stress specific to living with diabetes, may be both a precipitant and a consequence of eating disorders.
Diabetes may also increase body dissatisfaction. For example, people with type 1 diabetes might have had the experience of severe weight loss before diagnosis, followed by weight gain with the initiation of insulin therapy. This change can lead to body dissatisfaction and preoccupation with weight.
Q: What are the health risks from eating disorders for people with diabetes?
A: There’s lots of evidence that eating disorders are associated with early and severe diabetes-related complications, such as retinopathy, neuropathy, and nephropathy. Eating disorders in people with type 1 diabetes are associated with more frequent hospitalizations, more frequent episodes of diabetic ketoacidosis, and triple the risk of premature death. With type 1 diabetes and anorexia nervosa, one study reports a five-fold risk of premature death. Eating disorders also have other risks that are not unique to diabetes including, for example, electrolyte imbalances, gastric rupture, and signs and symptoms of malnourishment.
Q: How can health care professionals screen patients for eating disorders?
A: We use a brief screening in routine clinical care, asking two slightly modified questions from the Diabetes Eating Problem Survey: Do you feel like your eating is out of control? Do you take less insulin than you need because of concerns about your eating or weight?
We also screen for diabetes distress with two questions: Do you feel overwhelmed by the demands of living with diabetes? Do you feel that you are often failing with your diabetes regimen? You can identify a lot of people who may have problems with disordered eating by assessing for diabetes distress, because these experiences so commonly co-occur. Screening for diabetes distress will also help you identify other patients who may benefit from counseling.
Self-report questionnaires have the advantage of being easily administered at routine clinic visits. They may also increase reporting of these problems because they provide avenue for communication and circumvent guilt or shame that keeps people from reporting this information to their doctors.
Q: What signs should health care professionals look for to identify whether a patient has an eating disorder?
A: Signs of eating disorders include chronically elevated A1C or repeated diabetic ketoacidosis episodes despite the patient having received diabetes education or other types of interventions. For people with continuous glucose monitoring devices, you might see significant daily blood glucose variability (a roller coaster glucose trace) that reflects binge eating followed by maladaptive strategies to re-establish control. Other signs to look for are significant changes in weight, preoccupation with weight, reporting feeling “fat,” and distress after weighing at a medical appointment.
We would caution against assuming that people do not have an eating disorder just because their A1C is not elevated. A1C is just an average and it can obscure problems. A low A1C might also be achieved by restriction or other unhealthy eating behaviors.
Q: Once you’ve identified that a patient has an eating disorder, what sort of treatment can you provide?
A: Creating a space where people feel safe to disclose their disordered eating or guilt and shame around eating is important.
It is also important to try to take evaluative language out of eating and diabetes management. For example, rather than referring to an A1C value as “good” or “bad” or talk about “correcting” blood sugar, health care professionals might use more descriptive language. For example, patients may be encouraged instead to approach their daily blood glucose values or A1C as simply data, and “adjust” rather than “correct” their blood sugar. It’s also helpful to work with the patient to set small achievable goals and celebrate any improvement.
If you find out a patient has an eating disorder, it may be useful to weigh this person less frequently or have the person turn around on the scale, so they don’t see the number and become distressed by it, which may trigger symptom use.
People with diabetes who have an eating disorder should be encouraged to seek help from a qualified professional. Patients and health care professionals should look for a counselor who has in-depth knowledge of eating disorders and diabetes, both of which require specialized management. With the increased awareness of these problems, more practitioners will have expertise at this intersection.
There are a few residential facilities that have established specialty tracks for eating disorders and diabetes, which is really good to see and necessary for some people with more severe problems, including severe restriction and low weight, frequent binge eating, or withholding of insulin.
I also connect people to support groups like Diabetes Sisters. The websites We Are Diabetes and Diabulimia Helpline have a lot of resources, including a review of inpatient and residential facilities. However, people should be aware that these organizations are run by people who are open about their own eating disorder histories, and this may be upsetting in some way.
Q: Any other advice?
A: If you are a diabetes specialist but are unfamiliar with eating disorders, you should consult with someone who specializes in this area. There are some unique issues to contend with compared to something like anxiety or depression. For example, starvation can impair cognitive functioning and binge eating can engage reward pathways and have addictive qualities.
On the other hand, if you are a specialist in eating disorders, seek consultation with an endocrinologist and get yourself up to speed on what it means to have diabetes. It is easy to miss eating disorder behaviors or misinterpret diabetes management as eating disorder behaviors if you are unfamiliar with diabetes, particularly in the case of type 1 diabetes.
Often family members or other people need to be involved to help block eating disorder behaviors, even when the patient is an adult.
Q: Tell us about your research on an intervention for people with diabetes and eating disorders.
A: Most of our research has been with people with type 1 diabetes. Before we developed an intervention, we conducted some other studies. We used ecological momentary assessment, which is when you collect data in the moment in the person’s home environment using mobile phones or other devices. We asked people about their emotions and other experiences before meals and throughout the day, and about their diabetes management. What we found (PDF, 706 KB) is that if people are feeling anxious or guilty in the hour before a meal, they were about twice as likely to omit their insulin. They were also way more likely to omit insulin if they perceived themselves to have broken one of their food rules.
We also looked at time of day when people tend to omit insulin more or binge eat. We found that people who engage in overnight eating are far more likely to not take insulin that they need.
These kinds of observations led us to think we need to be delivering treatment in the moment that people are making decisions about their diabetes management. We developed a hybrid treatment protocol based on Acceptance and Commitment Therapy (ACT) that combined in-person and mobile intervention. Participants tracked their thoughts, feelings, and behaviors using a mobile app, and when they reported distress, they received reminders to use ACT-based coping skills rather than engaging in their eating disorder behavior. One of the really neat features of this app was that it also delivered reminders of patients’ personal values to encourage willingness to experience difficult thoughts and feelings without maladaptive avoidance or escape behaviors.
We conducted a small open trial of this intervention with patients who have type 1 diabetes. These were all women and the mean age was 35. The results were recently published in the Journal of Eating Disorders. From baseline to three months, we saw large improvements for participants’ eating problems, diabetes distress, and diabetes self-management. We also saw changes in process measures: People were reporting greater acceptance of difficult thoughts and feelings, and they were reporting more values engagement—making a hard choice because it mattered to them and aligned with their personal values. We also saw a nice change in A1C levels, but this was the only variable that didn’t quite reach significance. So this study is certainly a nice start, but now we need to do a controlled trial. Results also might not generalize to other more diverse samples. Hopefully this spawns more much needed research.
How do you screen for eating disorders in your clinical practice? Tell us in the comments.