According to the National Center for Anorexia Nervosa and Associated Disorders, up to one-third of patients with type 1 diabetes between the ages of 15 and 30 engage in the very unhealthy practice of insulin manipulation.
While bulimia symptoms typically include purging via vomiting, laxatives or compulsive exercise to lose weight, people with diabetes may restrict insulin to lose weight, a weight-loss mechanism often referred to as “diabulimia.”
Dr. Ovidio Bermudez, Chief Clinical Officer and Medical Director of Child and Adolescent Services at Eating Recovery Center explains this disorder: “The dual diagnosis of an eating disorder and type 1 diabetes is often referred to as ‘diabulimia,’ although this is not a medically recognized term and it is not an accurate description.”
The best and most descriptive term of this conditions is the Dual Diagnosis of Eating Disorder and Diabetes Mellitus Type 1 (ED-DMT1).
In recognition of American Diabetes Association Alert Day on March 22, 2016, we discuss this concerning health condition.
Insulin and type 1 diabetes
First, let’s discuss how insulin helps those with type 1 diabetes:
- Much of what we eat gets broken down into glucose. Insulin allows our cells to use this glucose for fuel, or to store as fat.
- Because the pancreas of those with type 1 diabetes has lost its ability to produce insulin, people with type 1 diabetes must administer insulin daily to help their bodies absorb glucose.
- If individuals do not administer insulin as they ingest carbohydrates, they are unable to get glucose into cells and levels of blood glucose rise.
- This becomes an energy crisis at the cellular level given that the glucose is in the blood but unable to be utilized by cells.
- The cells are starving and this manifests itself as weight loss.
People with type 1 diabetes can use insulin manipulation as a weight-loss tool. They may skip doses of insulin, under dose or omit insulin altogether. When this happens, sugar is eliminated from the body via urination, instead of being stored as fat or used as fuel.
The result? The individual loses weight. They can, essentially, “purge” themselves of calories in this manner.
"This is something all diabetics know. They clearly understand if they omit, under dose, delay or disable insulin, there's a steep medical price to pay," Bermudez explains. "But these patients go into a state of denial, where they feel they have it under control."
The concern here is that people with type 1 diabetes, that are also prone to eating disorder behaviors, may partake in this harmful method regularly, leading to harmful consequences.
Dr. Bermudez explains, “Insulin manipulation is an 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, even if they fully understand the risk.”
Signs and symptoms of ED-DMT1
The most significant symptom associated with ED-DMT1 is weight loss. Other signs and symptoms of diabulimia include:
- Chronic insulin deficiency with hyperglycemia, ketonuria, and recurrent episodes of diabetic ketoacidosis (DKA)
- Growth arrest or delay in adolescents
- Increased percentage of hemoglobin A1c levels (in spite of good blood sugar records, which may be falsified by the patient).
- Polydipsia (excessive thirst)
- Polyphagia (increased hunger), which can lead to binging
- Polyuria (frequent urination)
- Poor metabolic control (glycemic control), especially if the patient had good metabolic control previously
- Rapid weight loss
- Recurrent episodes of hypoglycemia
When an individual is struggling with ED-DMT1, you may not notice any distinctive signs, other than weight loss. You may, however, notice other eating disorder behaviors, including dieting, binging, rituals around food, or refusal to eat in the presence of others. The person may also express negative feelings about their size, weight, or appearance. They may also show signs of depression or social isolation.
If your loved one constantly or frequently talks about their weight, has a negative body image, or is obsessed with exercise or food — pay attention — and seek help if warranted.
Risk factors for ED-DMT1
Type 1 diabetes is, indeed, a risk factor for eating disorders. Studies show that females with type 1 diabetes are twice as likely as their non-diabetic peers to be diagnosed with an eating disorder. This is especially true for pre-teens and teens, who seem to be the most vulnerable. However, eating disorders can present in young adults and adults with type 1 diabetes as well. Overall, ED-DMT1 can affect people at any age, and at any weight; diabulimia has a number of causes.
People who have particular personality traits and genetic tendencies, when combined with certain mental health issues, environmental factors and a strong cultural influence (the thin body as the “ideal”) seem to be more likely to develop eating disorders.
What to watch for
Behaviors that could indicate that an individual is struggling with ED-DMT1 include the following:
- Depressed or anxious mood
- Deterioration in academic or work performance
- Failure to attend medical appointments
- Hoarding or hiding food
- Refusal to eat with other people
- Secretive behaviors around meals, exercise and insulin administration
- Social isolation or withdrawal
- Obsessive-compulsive symptoms or Obsessive Compulsive Disorder (OCD)
- Intentional behaviors (self-injury and suicide risk)
- Non-intentional behaviors (permanent harm from complications of hypo and hyperglycemia including death)
Complications of ED-DMT1
ED-DMT1 is a serious health condition that can lead to a number of complications, including insulin deficiency, ketonuria, diabetic ketoacidosis and hyperglycemia. Over time, persistent hyperglycemia can lead to the damage of small vessels and damage of nerve cells, specifically peripheral nerves.
At the extreme, complications can include:
- Damage to the heart
- Damage to the kidney
- Damage to the retina of the eye
- Damage to peripheral nerves
It is true that these complications can affect all patients with type 1 diabetes. For those with ED-DMT1, the risk of these complications increases significantly, both in earlier appearance and in rapid progression of these complications.
Another frightening statistic is that ED-DMT1 is associated with an increased mortality risk when compared to a diagnosis of type 1 diabetes alone or a diagnosis of anorexia nervosa alone. This reflects the importance of diagnosing and treating ED-DMT1 in an appropriate and efficient manner.
A high index of suspicion is the key for any health care professional working with a patient with type 1 diabetes. Early recognition is the key to avoiding life-changing complications; diabulimia has many health risks.
Treatment of ED-DMT1
Due to the serious nature of complications and an increased risk of premature death, it is imperative that individuals seek help for ED-DMT1.
In outpatient settings and in higher levels of care, a multidisciplinary approach is often best to effectively treat a patient’s individual needs in the following areas:
For patients that are newly diagnosed with this condition, hospitalization may be necessary, due to the high risk of medical and psychiatric complications and high mortality risk.
When seeking treatment for diabulimia, consider the level of care that will be required for recovery, the type of setting and treatment approach that is best for the patient, and the level of expertise of the providers.
ED-DMT1 Treatment at Eating Recovery Center
At our eating disorder treatment centers, we offer a sophisticated protocol to provide the best care for our patients, based on continuously evolving practices that address the needs of those suffering with these serious conditions.
We follow an "assume then resume" approach at Eating Recovery Center, meaning:
1) First, the treatment team takes over the responsibility of diabetes management (counting carbohydrates, checking blood sugars, calculating dose of insulin and administering insulin), and
2) Next, the control is gradually transferred over to the patient — once the patient has demonstrated the willingness and ability to manage this well and consistently.
If a patient is suffering from another mental health illness like depression or anxiety, they should be evaluated and treated for that, as well. And, if the patient is engaging in other damaging behaviors like excessive exercise or purging, those behaviors need to be addressed in treatment.
Support and recovery
Since ongoing insulin management will need to continue after treatment ends, the patient will need to return to the care of local endocrinologists — ideally those that understand the pathology of ED-DMT1. Lapses and relapses may occur, possibly even frequently.
Ongoing support from family, friends and healthcare providers will be crucial, along with collaboration from eating disorder professionals and diabetes care professionals.
Dr. Bermudez offers hope for all individuals struggling with these issues, saying, “I have seen many young diabetics regain focus, resume appropriate management of their diabetes and recover their health, happiness, and engagement with a meaningful life. However, for those where this is left unaddressed, the consequences can be devastating. There is hope. Get help!”
Medically reviewed by Ovidio Bermudez, MD, FAAP, FSAHM, FAED, F.iaedp, CEDS, Chief Clinical Officer and Medical Director of Child and Adolescent Services.
Written by Britt Berg for Eating Recovery Center.