For our readers: Our goal is to help increase awareness of the dual diagnosis of an eating disorder and type 1 diabetes (T1D), which is referred to as “ED-DMT1.” To accomplish this, we asked two experts, a physician and a registered dietitian who treat ED-DMT1, to answer questions about this condition. Please read the answers provided by these professionals, Ovidio Bermudez, M.D., and Jennifer Sommer, M.S., R.D. We thank them for contributing their expertise to Countdown.
What is ED-DMT1?
The dual diagnosis of an eating disorder and type 1 diabetes is often referred to as “diabulimia,” however this is not a medically recognized term and it is not an accurate description. This syndrome is termed among healthcare professionals as “ED-DMT1,” which represents this dual diagnosis in an individual with type 1 diabetes. Note: “DMT1” refers to diabetes mellitus type 1. For clarity, “type 1 diabetes” will be spelled out in this article in place of the abbreviation “T1D.”
ED-DMT1 describes the intentional misuse of insulin for weight control. This could be caused by decreasing the prescribed dose of insulin, omitting insulin entirely, delaying the appropriate dose, or manipulating the insulin itself to render it inactive. Any of these actions can result in hyperglycemia (high blood glucose levels) and glucose excretion in the urine, which causes weight loss. So, in a sense, calories are “purged” this way, which is where the term diabulimia stems from. However, a person suffering from ED-DMT1 may not be diagnosed with bulimia or have any symptoms of bulimia such as binge eating and self-induced vomiting. On the other hand, some individuals may only withhold insulin after they have binged (whether it be a true binge or just a larger-than-typical amount of food) as a method of purging. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors—or they may only manipulate their insulin and otherwise have normal eating patterns.
How many people in the United States have ED-DMT1, and who is at highest risk?
It is unclear exactly how many people in the United States have ED-DMT1. What is a striking statistic is the percentage of people who have type 1 diabetes who also have an eating disorder or disordered eating. “Eating disorder” refers to abnormal eating habits that may involve either insufficient or excessive food intake to the detriment of a person’s health, such as anorexia nervosa or bulimia nervosa. “Disordered eating” refers to a wide range of irregular eating behaviors that do not warrant a diagnosis of a specific eating disorder.
Also alarming is the rate at which treatment centers are seeing more and more cases of people with ED-DMT1 who have become ill to the point of requiring intervention at the inpatient, residential, or partial hospitalization levels of care.
The statistics vary slightly from study to study and depending on the criteria used, but in each case the numbers are quite high. A study by Patricia Colton, M.D., a psychiatrist at the Eating Disorders Program at Toronto General Hospital, found that 7-35% of girls and women with type 1 diabetes met the criteria for what is termed a “sub-threshold” eating disorder, meaning they display symptoms of an eating disorder but may not meet the full criteria. In that study 0-11% met the criteria for a full-syndrome eating disorder. These are pretty dramatic numbers when you compare them to the non-diabetic population. Rates in the general female population vary from 1-2% for bulimia nervosa and 0.5-1% for anorexia nervosa. It’s been reported that girls with type 1 diabetes are twice as likely to be diagnosed with an eating disorder compared to their non-diabetic peers.
So we see that people with type 1 diabetes are at a much higher risk of developing an eating disorder than the non-diabetic population. Women appear to be at higher risk than men, and the pre-teen and teen years are a particularly vulnerable time.
What causes ED-DMT1?
There is no one single factor that causes an eating disorder to develop. There is definitely a genetic component. Also, certain personality traits can increase a person’s risk of developing an eating disorder. Sometimes a traumatic event such as a divorce or the loss of a loved one can trigger an eating disorder in a susceptible individual.
As mentioned above, having type 1 diabetes puts a person at increased risk for developing an eating disorder—but the question is why? What we find is that there are several contributing factors. A major one is the necessary emphasis on food and dietary restraint associated with the management of the disease. Carbohydrate counting and meal planning are important parts of diabetes management and this can create an unhealthy focus on food, numbers, and control. Also, there is often some weight gain associated with the initiation of insulin treatment, and this can be very uncomfortable physically and emotionally. Then there are the psychological and emotional effects of having to manage a chronic medical condition such as type 1 diabetes, which there is no precise way to measure but certainly has an impact. We do know that depression and anxiety are common with both type 1 diabetes and an eating disorder diagnosis. Lastly, there is the temptation factor. Unfortunately, insulin manipulation is an easy and effective, although dangerous, method of weight loss, which makes it difficult to resist if someone is struggling with eating disordered thoughts or poor body image.
What are the clinical signs and symptoms (not including complications)?
The most salient clinical sign of the dual diagnosis of ED-DMT1 is weight loss. Another major sign would be poor blood-glucose control, especially if the person previously had good control. People with chronic insulin deficiency, in this case self-imposed, experience hyperglycemia, recurrent or persistent ketonuria, and these symptoms can often lead to recurrent episodes of diabetic ketoacidosis (DKA). Symptoms can also include polydipsia (excessive thirst), polyuria (frequent urination) and polyphagia (increased hunger). Other signs that clinicians look for are rapid weight loss, growth failure in adolescents, severe recurrent episodes of hypoglycemia, and higher than usual hemoglobin A1c levels (especially in spite of good blood sugar records, which may be falsified by the individual). General signs of disordered eating such as dieting, binge eating, abnormal behaviors or rituals around food, or refusal to eat in the presence of others could be indicators of a problem. Constant or frequent talk about weight, body image, exercise and/or food is also a sign.
Aside from weight loss, are there any visible signs, symptoms, or behaviors?
Besides weight loss, there are no specifically distinguishing visible signs of the dual diagnosis of ED-DMT1 that would make a healthcare professional or lay person recognize individuals with this diagnosis. Some “tip offs” may include recurrent or chronic acetone breath, wasting of muscle mass that comes with the weight loss, frequent urination, frequent thirst, and “not looking well.” At times in which these patients are in DKA, they may appear acutely ill, dehydrated, and may even show altered mental status (such as not seeming like themselves).
There could also be behavioral signs such as secretive behavior, especially surrounding meals and insulin administration, refusal to eat around other people, or hoarding of food. Also failure to attend medical appointments or to bring type 1 diabetes management records and/or food diaries to appointments could indicate that something is wrong. Although not specific to ED-DMT1, a depressed mood, social withdrawal, or deterioration in school or work performance could also be signs of a problem. There may be physical signs such as scarring on the top of the hands from inducing purging (called Russell’s sign), or lanugo (the soft fine hair that develops to keep an undernourished body warm). These are signs of an eating disorder, but not specific to ED-DMT1.
Most people with type 1 diabetes are very familiar with the complications that can arise from their illness. What are the complications that can arise from the dual diagnosis of ED-DMT1?
There are both acute and chronic complications associated with the dual diagnosis. Both acute and chronic complications can be serious and even deadly. Insulin deficiency leads to hyperglycemia or elevated levels of glucose in the bloodstream. Hyperglycemia, in turn, leads to damage of small vessels, so called “microvascular damage” and damage of nerve cells, specifically peripheral nerves. In type 1 diabetes, the rate at which microvascular disease and peripheral nerve damage occurs has been more closely correlated with the length of suffering from the disease.
In the dual diagnosis of ED-DMT1, the degree of hyperglycemia allowed or induced by these patients is so significant, that the rate of onset and later progression of severity of both microvascular disease and peripheral nerve damage is greatly accelerated. The complications most frequently seen in all types of diabetes are damage to the retina of the eye, damage to the kidney, and damage to the heart and these are related to microvascular disease. The other frequently seen complication is small nerve damage (peripheral neuropathy) which can manifest with pain, tingling, and even numbness of hands and feet. These complications can and do occur in all forms of diabetes but are accelerated in their time of onset and progression in the dual diagnosis of ED-DMT1.
Another unfortunate but important concern for this group of patients is the increased mortality risk that they experience. In one study, the risk of death for the dual diagnosis of ED-DMT1 was 17-fold compared to type 1 diabetes alone and seven-fold compared to anorexia nervosa alone. This is alarming and a reflection of the real risk brought about the co-existence of these two diagnoses. Serious and premature complications of type 1 diabetes and a significantly increased risk of premature death make the dual diagnosis of ED-DMT1 a very serious condition. In summary, complications for those with ED-DMT1 can be divided into acute and chronic complications of insulin deficiency and hyperglycemia. The acute complications include polyuria, polydipsia, weight loss, and DKA. The chronic complications are related to diabetic microvascular disease often affecting the eyes, the kidneys, and the heart, and peripheral neuropathy.
Why are these complications such an important issue?
The main reason is that the consequences are so severe. As mentioned before, we see a rapid acceleration of diabetic complications when an eating disorder is combined with type 1 diabetes. These complications often require extensive (and expensive) medical attention. Many of the complications of type 1 diabetes are long-term complications, but they appear much earlier with ED-DMT1. In this context, it is not unusual to encounter patients in their twenties who are already suffering from retinopathy. Another reason would be because the risk of a person with type 1 diabetes developing an eating disorder or disordered eating is so high. It’s important for people to be aware of the issue so that hopefully individuals who are struggling can be identified and helped sooner. School personnel, coaches, trainers, and teachers are important groups to work with in increasing their awareness and knowledge about this condition. Most importantly, healthcare professionals working with patients with diabetes, need to be aware of the fact that type 1 diabetes is a risk factor for the development of an eating disorder. They should have a high level of alertness and knowledge of eating disorder treatment resources so that they can identify these cases and refer them in a timely fashion to treatment teams or facilities with expertise in the care of those with dual diagnosis of ED-DMT1.
How is ED-DMT1 treated? What have you seen and learned about ED-DMT1 that has been helpful?
As with the treatment of all eating disorders, a multidisciplinary team approach is necessary. A medical doctor, therapist, and registered dietitian (preferably all with expertise in the care of this condition) would be the minimum needed to manage ED-DMT1. The first step is medical stabilization, which in severe cases will require hospitalization. The goal of any treatment approach is to normalize the use of insulin, normalize blood glucose levels, normalize the patient’s weight, and avoid acute and chronic complications of insulin deficiency and hyperglycemia. If the patient is engaging in other destructive behaviors such as excessive exercise or purging, then these must be interrupted as well.
Many treatment centers follow an “assume then resume” approach, meaning first the treatment team takes over the control of type 1 diabetes management (counting carbohydrates, checking blood glucose levels, and administering insulin). Then the control is gradually transferred over to the patient when the treatment team feels that the patient is ready. If the patient is suffering from other co-occurring psychiatric conditions such as depression or anxiety, then these need to be addressed as well. Returning to their day-to-day lives can prove to be a difficult leap for these patients and the aftermath of even successful treatment is often plagued with lapses and relapses. These patients often understand the risks that come from their manipulation of insulin so efforts to increase their education about risks of poorly managed diabetes alone are not an effective deterrent for relapse.
In our experience, sustainable recovery is usually attained by those who, after interrupting the symptoms, embark on a process of identifying their personal values and life priorities, and then transition to an aftercare plan. Such a plan must include professional support and accountability; support of family and other loved ones; personal engagement with meaningful activities; and the pursuit of personal interests. In other words, like in other fields of medicine such as the treatment of chemical dependency or addiction, the successful completion of treatment includes a solid aftercare and relapse-prevention plan.
Unfortunately, not all diabetes care professionals or centers are able to work with and support individuals with ED-DMT1. Collaboration between the fields of diabetes care and eating disorders care is very important. On the other hand, there is an increasing awareness and understanding to ED-DMT1, its seriousness, and its risks. Organizations in the field of eating disorders are recognizing that this serious condition merits attention and they are increasingly providing educational opportunities for their members. ED-DMT1 is often discussed in meetings of professional organizations such as the National Eating Disorder Association (NEDA), Academy for Eating Disorders (AED), and the International Association of Eating Disorders Professionals (IAEDP).
What type of support is available for people recovering from ED-DMT1, and/or their loved ones?
Treatment options for those suffering from ED-DMT1 include specialized outpatient or inpatient treatment programs. Some eating disorder treatment centers have weekly support groups. Some support organizations, such as NEDA, have websites that offer education and support, although these may not be specific to ED-DMT1. Treatment facilities, such as ours at Eating Recovery Center, offer specialized programming to address the specific needs of this population. There are ongoing efforts to increase education about this condition for the professional groups involved in their care and the public at large. Loved ones of those struggling with ED-DMT1 might benefit from seeking out family therapy or even their own individual therapy.
There can be misconceptions surrounding eating disorders, such as the idea that young people develop eating disorders to look like models or celebrities. Are there any misconceptions that you have encountered that are specific to ED-DMT1?
It’s definitely not about being thin. We have worked with a patient who admitted that her insulin manipulation was a form of rebellion. She was angry at her body for “betraying” her with type 1 diabetes and this was her way of showing that anger. As with all types of eating disorders, ED-DMT1 is often rooted in much deeper issues than appearance. Another misconception is that the only form of insulin manipulation is decreasing or omitting it (in order to lose weight as described earlier). We have worked with several patients who actually overdose their insulin in order to run blood sugars low, or to exert extremely tight control. The eating disorder can look different from individual to individual. It is important to note that as in the case with other eating disorders, the dual diagnosis of ED-DMT1 affects people of all ages, both genders, all socio-economic statuses, races, and ethnicities.
As with many other areas of medicine and mental health, as we identify different manifestations of illnesses and their nuances, we also broaden the understanding and begin to learn how to best approach them. This has also been the case with the dual diagnosis of ED-DMT1. Early recognition and timely intervention are still the best we have to offer these patients. A critical component of any treatment effort is the understanding that interrupting insulin manipulation can slow down and eventually decrease the risk of complications as blood glucose normalizes.
There is growing awareness among diabetes care health professionals about the risks of those with type 1 diabetes developing eating-related pathology and of the “red flags” that may lead to early recognition. Collaboration among the fields of diabetology and eating disorders, not only is likely to enhance clinical care but also to foster ongoing research, including ways to modify diabetes care education in ways that may decrease the development of eating related pathology in those with type 1 diabetes. Not unlike working with other groups of individuals with eating disorders, these patients can show remarkable progress with appropriate treatment. One example of the progress made is the summer 2011 issue of Diabetes Spectrum, the journal of the American Diabetes Association, which included several articles on the “state of the science” in the diagnosis and management of the dual diagnosis of ED-DMT1.
Awareness of the dual diagnosis of ED-DMT1 has increased dramatically in the field of eating disorders the past several years and treatment facilities are learning how to further improve their treatment approaches. Hopefully more research will be done on the screening and prevention of this disease so that people can be helped sooner and the complication rate can be decreased. As with many illnesses, early detection is key, and success rates are promising for those who seek care.
The information in this article is offered for general educational purposes and is not intended to replace professional medical advice. You should not make any changes to the management of type 1 diabetes without first consulting your physician or other qualified medical professional.