His medical providers screened him for celiac disease and giardiasis. They tested his thyroid and used an MRI machine to scan his brain.
Although he’d lost 87 pounds over two years, Daniel’s doctors never discussed his dramatic weight loss as a possible source of his problems.
It wasn’t until his mother asked for a referral that Daniel was evaluated for an eating disorder, where clinicians at the Mayo Clinic learned he’d banished carbohydrates, fats and sweets from his diet and restricted himself to no more than 600 calories a day – while running on a cross-country team. They recognized his physical and emotional problems as symptoms of malnutrition.
Daniel, a patient at the Mayo Clinic’s eating disorders program in Rochester, Minn., is one of two formerly obese adolescents who developed anorexia as they lost weight whose cases are highlighted in an article published last week by the journal of the American Academy of Pediatrics. While obese adolescents face “significant” risk of developing an eating disorder, the article’s authors wrote, their symptoms often go unrecognized and their disorders untreated, because their new weights may be considered normal even as they suffer serious medical fallout.
That’s a problem, the authors wrote, because research suggests adolescents who receive early treatment for their eating disorders have a better chance of recovery.
Leslie Sim, clinical director of the Mayo Clinic program, said she and her colleagues were amazed at how many adolescents who entered the clinic for eating disorders had started out as very overweight or obese – 35 percent of the clinic’s patients with anorexia or other “food restricting” disorders.
“These poor kids. They have it pretty rough, when you think about it,” Sim, the article’s main author, said in an interview. “Society is so concerned (about obesity), and sometimes their concerns can morph into stigma and shaming. Then, of course, these kids don’t want to be singled out or told they’re doing something wrong. … They take drastic measures to change their weight.”
The stories illustrate challenges in identifying eating disorders in adolescents with a history of obesity, she said. Doctors often discuss weight with youths who weigh too much. But in the cases of Daniel and others, medical providers never discussed weight loss as a potential cause of their medical problems, Sim said.
“When (formerly overweight or obese adolescents) come into our clinic they look like the average kid, but their hair’s falling out and they’re not menstruating and they’re very, very sick kids – and they’re not being identified because of their weight,” she said.
The article may signal a change in the way eating disorders are diagnosed, said Michelle Weinbender, a dietitian at the Emily Program in Spokane, an eating disorder treatment center that opened in June.
Traditionally, criteria for diagnosing a young person with an eating disorder such as anorexia included abnormally low weight.
“Typically, you’d take an adolescent into the physician and say, ‘This is a concern. Their weight’s dropped way off the growth curve, or they’re below a percentage weight that’s normal for them,’ ” she said.
But a formerly obese adolescent with an eating disorder could appear to be a healthy weight – but also think and behave in unhealthy ways around food. While they’re consuming too few calories, for example, or maintaining rigid rules around food that are causing medical problems, they may not be flagged for anorexia.
Krista Crotty, the Emily Program’s site manager and a psychologist, said her sickest patients include one who’s technically at a healthy weight, with a body-mass index above the “red-flag danger zone,” and will likely stay around that BMI because of her genetics and body type. But the patient shares medical symptoms with patients with BMIs considered far too low.
“It’s the difference between a healthy state of being and a healthy weight,” Crotty said. “You can be a really healthy weight and be a really, really sick person, and have so many compulsory behaviors that could legitimately kill you. You just never would know.”
Sim said she and her colleagues haven’t nailed down a cause-and-effect relationship between obesity and restrictive eating disorders. But most eating disorders – a category of mental illness rooted in biology – are triggered by diets designed to reduce weight, she said.
The diets undertaken by people with obesity are often unhealthy. While professionals who work with eating disorder patients advise them to avoid “food rules” – eliminating carbs, for example – and to be flexible in their eating, people with obesity often hear conflicting advice from media or other outlets.
“Then they develop these more rigid beliefs about food and weight, and they start to get afraid of gaining weight back,” Sim said.
There’s no clear mark on the scale that signals it’s time for an adolescent to stop losing weight, Sim said, because everybody is different. (Although if an adolescent is suffering physical symptoms related to weight loss, such as a halt in menstruation, “your weight is simply too low,” she said.)
But no matter their weight, an adolescent’s behavior toward food can signal an eating disorder, she said. Some examples: “When people can’t be flexible anymore. When they have to avoid doing things they would enjoy because there’s going to be food there and they don’t know what they’re going to do. When they can’t regulate their own eating anymore.
“When they start to feel guilty about eating or ashamed or it starts to kind of control their life – their friendships, their social life, their emotions. That’s really when it becomes a problem – when the thinking becomes really distorted about food and weight and shape.”
While health educators often talk about the “childhood obesity epidemic” to raise awareness of its health risks, eating disorders are serious conditions, too, and carry their own set of grave medical risks, Sim and her colleagues wrote.
When anti-obesity messages – from media, doctors, families, health campaigns – focus on weight rather than overall health, they can be unhelpful, those who work with eating-disorder patients said.
“Not that I don’t think there should be messages, but for someone who’s at risk of developing an eating disorder, any message could probably be triggering,” said Weinbender, the dietitian. “So I think messaging should be less directed at size, per se … but more about health and taking care of yourself and eating well to fuel your body.”
Crotty, the psychologist, said healthy weight loss comes as people work to get their overall health in order: “Losing weight will probably come as a result of healthy activity, a healthy intake of food – all those sorts of things, as opposed to it being all about numbers: BMI, weight, the size of your pants.”
Sim said it’s up to physicians to keep talking with their adolescent patients about weight – even if they’ve lost it.
“We don’t go, ‘Hey, great, your weight is in the normal range.’ We go, ‘Hey, I notice your weight has changed. What are you doing? How did you make that happen?’ If they go, ‘I just stopped drinking soda pop,’ wonderful.”
If it turns out the adolescent is consuming too little food or vomiting or using laxatives, they might need help.
“It’s not the weight, per se, that’s healthy,” Sim said. “It’s what is the kid doing to be at that weight.”