They’re underdosing insulin to lose weight. It’s a risky game diabetic girls are playing

All eating disorders are dangerous. But an eating disorder combined with the chronic illness of type 1 diabetes is a perfect storm for a health disaster.

The disorder is called diabulimia and it has been on the radar of psychiatrists and endocrinologists since the term was first used in a 1998 medical journal.

And while many of us have never heard of it, diabulimia is growing at an alarming rate among adolescents and young patients with type 1 diabetes.

These patients learn how to restrict, or even omit, their insulin in order to lose or control weight.

For a young patient, most often a girl, a fear can develop that insulin causes weight gain. When that fear is so strong, they risk diabetic ketoacidosis to be thin for their friends, family and themselves.

“Another way to look at it is that the patient finds that if they withhold insulin they won’t gain weight,” said Dr. Adriana Carrillo, a pediatric endocrinologist at Nicklaus Children’s Hospital.

“If a person with type 1 diabetes does not take insulin, they will die. This is the most dangerous eating disorder. The effects are short term and long term,” she said.

Diabulimia is characterized by weight and body image concerns that lead to the mismanagement of diabetes. Carrillo said when kids come to see her they are given a questionnaire in an attempt to screen for the possibilities of bad control of insulin.

“At first, if you are in poor control of diabetes, you don’t feel sick. You may be thirsty or peeing more. But your body gets used to it. A patient thinks, ‘I look healthy,’ but they’re in a medical emergency,” Carrillo said.

Restricting insulin to lose weight can lead to serious diabetes complications. Patients often develop pains in their lower back from kidney damage, the nerves in their hands and feet tingle as diabetic neuropathy sets in, and their eyesight starts to fail. A diabulimia patient can get migraines and is easily dizzy.

Both the diabetes and the eating disorder have to be fought on a daily basis.

In type 1 diabetes, which often affects children and teens, the pancreas is incapable of producing enough insulin, the hormone needed for the body to get the fuel it needs from glucose. Type 1 diabetics must regularly acquire insulin from an external source to remain alive. When a person reduces or omits insulin, a diabetic forces sugar to leave the body through urine.

“We know how diabetes develops; we just don’t know what triggers the process,” Carrillo said. She attributes family genetics, autoimmune factors, and environmental, possibly enteroviral, infections as responsible for the development of type 1 diabetes.

The National Eating Disorders Association reports that with “the intense focus on food, labels, numbers (weight, blood glucose, A1C) and control, plus the many disruptions that occur in a person’s metabolic system” diabetes is a high risk factor for developing an eating disorder.

A person may develop diabulimia “at any age and at any point after their diabetes diagnosis. Sometimes it begins with body image issues or a desire to lose weight, and sometimes it begins as diabetes burnout.”

In “Diabulimia: the world’s most dangerous eating disorder,” health journalist Ingrid Torjesen writes that the eating disorder is most common in young people aged between 15 and 30, particularly women. A video with the same title that follows three diabulimia patients in the United Kingdom has over five million views.

The Internet has pages and pages of information on diabetes and diets, and the dangers of not getting the correct dose of insulin. But then there are peer pressures, and social media, factors that can unpredictably sway a young person’s thinking.

“It’s hard for adolescents to understand the future. There are so many things going on in a young mind,” Carrillo said. “They are very smart kids and they learn from the Internet. They start learning and they think, ‘I’m not at the hospital. I’m not sick enough.’ Their parents might not recognize it because of the weight loss.”

Carrillo said she also sees boys suffering with diabulimia though it is more frequently seen in girls. Without insulin, or the proper dose, a patient with diabetes will go into a state of ketosis and from there they can go into a coma and possibly die.

Many dieters are familiar with ketosis. There is even a keto diet. Ketosis is the metabolic state where fat provides most of the fuel for the body when there is limited access to glucose or blood sugar. This blood sugar is the fuel source for many cells in the body.

In diabulimics, without their necessary insulin, they urinate the sugar and become dehydrated. The body starts to break down its fats to use as energy.

“They binge eat and can be admired for being able to eat whatever they want and still stay skinny,” Carrillo said. Symptoms of out-of-control diabetes, caused by withholding insulin, are frequent yeast infections and an apple, or fruit-like, body odor.

Parents, who are usually just beginning to give their adolescent more freedom, might also start to hear inaccurate glucose levels from a child with diabulimia. Children may report false blood sugar levels to their parents.

“If the numbers are too good and there is weight loss that is another sign,” Carrillo said. “Parents want their kids to be more independent at the time when it’s difficult for them to be independent on health issues.”

Ingrid Barrera, director of the eating disorders program and assistant professor of clinical psychiatry and behavioral sciences at the University of Miami Miller School of Medicine, agrees.

“The pressure from peers, some parents, and society is difficult and there’s a big demand to look a certain way. One half of teenage girls, and one third of teenage boys, are engaging in some kind of unhealthy behavior to control their weight,” Barrera said. Recent statistics, she said, reveal 42 percent of girls ages 6 to 10 wish they were thinner. And 4 out of 5 children think they are fat.

“Eating disorders have the highest mortality rate of all the psychiatric disorders,” Barrera said.

Barrera, who has been working with eating disorders patients as well as cancer patients for 10 years, said it is hard to deal with an eating disorder alone.

“Diabulimia needs to be treated like any other eating disorder. The family needs to talk with a professional. People don’t understand what an eating disorder is and how much patients need support. Family therapy is really important. They need to work together,” she said.

“There’s a sense of denial. And the comments about others, including from parents, about how a person looks have an effect. I say to people it’s not just what you tell your kids. It’s what you say about other people,” Barrera said.

Seven out of 10 men will never seek help with an eating disorder, Barrera said. “They see it as a female disease. The cause of eating disorders is still unknown but factors that play a key role include social environment, genetics and the media in general.”

Media images of skinny young women also play a part. Doctors cite Anne E. Becker’s work in Fiji as a prime example.

In 1982, Becker, a Harvard Medical School psychiatrist, traveled to Fiji and found there that family and social life revolved around food. Fijian women, as well as men, were appreciated for their “large, robust bodies.”

There was no television on the island and in 1995, without television, “girls in Fiji appeared to be free of the eating disorders common in the West.”

Three years later, “after just a few years of sexy soap operas and seductive commercials, 11.3 percent of adolescent girls reported they at least once had purged to lose weight.”

Signs to watch out for:

Secrecy about diabetes management

Avoiding diabetes related appointments

Fear of low blood sugars

Fear that “insulin makes me fat”

Extreme increase or decrease in diet

Extreme anxiety about body image

Restricting certain food or food groups to lower insulin dosages

Avoids eating with family or in public

Overly strict food rules

Preoccupation with food, weight and/or calories

Excessive and/or rigid exercise

Withdrawal from friends and/or family activities

Depression and/or anxiety

Infrequently filled prescriptions

PHYSICAL SIGNS

A1c of 9.0 or higher on a continuous basis

A1c inconsistent with meter readings

Unexplained weight loss

Constant bouts of nausea and/or vomiting

Persistent thirst and frequent urination

Multiple diabetic ketoacidosis or near DKA episodes

Low sodium and/or potassium

Frequent bladder and/or yeast infections

Irregular or lack of menstruation

Deteriorating or blurry vision

Fatigue or lethargy

Dry hair and skin

LONG-TERM EFFECTS

Retinopathy (black spots or “floaters” disrupting a person’s vision, can lead to blindness)

Macular Edema (swelling of the eyeball from excess fluid)

Peripheral Neuropathy (stabbing/burning/tingling pain, weakness or numbness in the hands, feet, legs and/or arms)

Chronic diarrhea or constipation (when nerves that control the intestines and colon are damaged)

Kidney disease (leading to kidney failure requiring dialysis or kidney transplant)

Liver disease

Heart disease

Coma

Stroke

Death

GET HELP

Immediately contact your child’s pediatrician or primary physician.

Learn more at www.nationaleatingdisorders.org/diabulimia-5 and contact the NEDA Helpline at 800-931-2237. In crisis text “NEDA” to 741741 to be connected with a trained volunteer at Crisis Text Line.

This story was originally published November 20, 2019 at 6:00 AM.