With celiac disease, an unhealthy relationship with food often develops. Here’s why it can even lead to a serious eating disorder.
My daughter’s first words were “bed” and “sick”. She was diagnosed with celiac disease at age 2, after months of vomiting, diarrhea and weight loss. We had to start telling her that familiar, favorite foods were now “bad” for her. I worried about the messaging.
Fast forward to age 15, a five-day school trip and a five-pound weight loss because there was so little “safe food” for her to eat. Like so many young women, Melanie discovered she liked the leaner look. I tried not to make an issue of it, trusting that, like most of us, her weight loss willpower would fade. But still, I was haunted by the early messaging.
The fact is, people with celiac have an uncomfortable relationship with food. And it will likely be a lifelong battle. Before their celiac diagnosis, food made them sick. After their diagnosis, food still often makes them sick, and eating remains a high-maintenance affair. Is this fertile ground for an eating disorder?
Apparently so, according to a Swedish study that shows higher rates of anorexia nervosa (or AN) in patients with celiac disease compared to control subjects.
Specifically, it found people with celiac disease are four to five times more likely to have had a previous diagnosis of AN, and they have twice the odds of battling anorexia in the future.
“No wonder!” said a chorus of celiac patients’ voices on social media, when the study appeared in the journal Pediatrics. “It’s the pain of it,” explains Tanille Hunik-Kosolofski, 41, from Calgary, Alberta, who was diagnosed with the trio of celiac, anorexia and IBS in 2013. “I don’t like food because of the pain it causes me.”
Weighing 103 pounds, Tanille has had “a terrible relationship” with food her whole life. Even after diagnosis, her gut is ultra-sensitive – not just to gluten but also corn, rice, dairy and even broccoli. “My dislike for food began when I was 14 and continues to this day,” she says. “My stepfather always believed that I was anorexic. I remember him carting me off to the doctor regularly when I was a teen.”
In 2013, she tried to be admitted to an eating disorder day program “to try to figure out why I had such dislike for food,” but was told she was ineligible – because she had celiac disease.
THE anorexia that Tanille describes is the medical term for “lack of appetite,” not the strict psychiatric diagnosis of AN that was examined in the Swedish study, says Dr. Neville Golden, a specialist in eating disorders and adolescent medicine at Stanford University School of Medicine in Palo Alto, California. “AN is at one end of the spectrum of eating disorders. Patients with it have low body weight, fear of gaining weight, and body image distortion,” he said in an interview.
Although the study found that AN occurs more frequently in celiac patients than other people, it is still not common. Out of almost 18,000 celiac patients spanning about 40 years, the researchers identified only 353 who had also been diagnosed with full-blown AN.
Interestingly, the risk was not increased in men. But, there’s plenty of room for other, milder types of eating disorders in the celiac world, says Golden. “Because of the nature of celiac disease, there is a great deal of focus on food, so you can become preoccupied by food. If the preoccupation leads to concerns about body image and desire to lose weight, an eating disorder may develop.”
That was the story for Karen,* 18, a college freshman in Florida, who was diagnosed with celiac almost seven years ago. Traveling with her sports team in high school, it was difficult to find gluten-free food. “She found that if she didn’t eat, she liked it and got used to the feeling of being hungry,” says her mother Sarah*.
“She was diagnosed with disordered eating this winter, and it has the potential to develop into anorexia,” says Sarah. “We got her in to see a really good counselor, and I think the worst is over for the moment, but this can and will probably flare up again and again during her life.”
Expanding the list of eating disorders beyond strict anorexia nervosa opens up a Pandora’s Box for celiac patients. One Austrian study found that almost 5 percent of teenage girls with celiac have some type of eating disorder, and 10 percent have a milder sub-clinical “eating pathology.”
Like the Swedish study, this one, published in the journal Psychosomatics, also found these problems only in girls. In most of them (86 percent), their celiac diagnosis preceded their eating pathology by between two and 17 years. Almost 60 percent of the girls used dieting for weight loss, 13 percent used excessive exercising, 19 percent used vomiting, and 3 percent abused laxatives.
Karen is still struggling with the feelings around her disordered eating diagnosis, and talking about them was too upsetting for her to be interviewed. But according to her mother, part of the appeal of food restriction was the sense of control it gave her. “She does have a worry about getting fat. The females on her dad’s side are overweight. So part of her fear is that she will be overweight.”
CONTROL – or lack of it – is a common theme for celiac patients, especially those who have spent years undiagnosed.
Nicole Salerno’s 2015 YouTube video shows a fragile, wan-looking teenager speaking sincerely to her audience. Just turning 16, she says she finally has a diagnosis of celiac disease, after an entire lifetime of stomach pain and toilet torture. She weighs just 87 pounds, but she’s putting a brave face on it. Now she will follow a gluten-free diet and get better, she says.
A year later, her next video is filled with bright-eyed, energetic enthusiasm. She has transformed. “I’m in a completely different place than I was in my last video. I am like, the best version of myself than I have ever been.”
But it had been a nightmare year of getting worse before she got better, dropping more weight, losing hair and her eyelashes, and being threatened with hospital admission and feeding tubes. “They were like, ‘Do you think you’re anorexic? And I said, absolutely not, I love food. Food is great, but I just can’t eat anything without feeling there’s knives in my stomach.”
“Everyone was sure she belonged neatly placed in the eating disorder/anxiety box,” says her mother Kathy Salerno, who lives with her daughter in Downingtown, a suburb of Philadelphia. “Even I allowed myself to go along with that instead of really trusting that she knew herself, and insisting someone dig deeper.”
Challenged to gain six pounds in two weeks, Nicole forced down nutritional drinks until her “scream-crying” made her parents rush her to the hospital. She had an emergency appendectomy, and that’s when the doctors found an anatomical birth defect that had literally tied her intestine in knots.
The anatomical problem had caused her discomfort her whole life, and the celiac disease then compounded her health and weight problems, by simultaneously destroying her intestine’s ability to absorb nutrients. The surgical discovery was sweet serendipity.
Along with the celiac diagnosis, it was a revelation that “helped to explain Nicole’s entire life,” says her mom. “I really feel that January 12, 2016 was the first day of my life,” agrees Nicole.
Nicole and Tanille’s symptoms went undiagnosed for years before anyone thought to test them for celiac disease. But it’s possible that other people with similar symptoms could have a celiac diagnosis missed because they’re simply not eating enough gluten.
“Adequate” gluten intake is needed for the screening blood test to pick up tissue transglutaminase antibodies (tTG-IgA), and while there is still debate as to exactly how much gluten is needed, it’s likely that people as sick as Nicole and Tanille were not eating much of anything.
Testing negative for celiac in such cases could lead to a misdiagnosis of an eating disorder: one potential explanation for the high rates of AN found before celiac disease in the Swedish study.
Yet Nicole and Tanille did not have the AN hallmark: distorted body image. “My daughter looked in the mirror and knew how thin she was,” says Kathy Salerno.
“Nothing would have made her happier than being able to eat without pain and explosive diarrhea. She wanted to gain weight, but eating was so painful that she became avoidant and developed a fear of food.” Tanille’s story is similar: “I knew I was too skinny. It wasn’t like I was trying to lose weight, it just hurt me, so I withdrew from food.”
Even now that she’s feeling well, Nicole’s relationship with food is still tenuous. Because of gluten, “there are so many things I can’t control. I can’t just go out and eat whatever I want with my friends,” she says. “I have to pack a food bag wherever I go.” Distrust is also a major issue. Mistakes at restaurants or by well-meaning friends and family can mean a major setback. “Lots of trips to the bathroom, headaches, my whole body hurts, huge fatigue. I won’t be myself for two weeks,” she says.
While her eating wasn’t intentionally disordered, looking back Nicole admits she understands where body image issues might come from. “I was always super bloated and that’s such a common symptom with celiac. I could totally see people looking in the mirror when they’re better, but still seeing what they saw when they were sick.”
Weight gain is a – mostly welcome – reality. Up from 84 to 105 pounds on a good day, she’s the heaviest she’s ever been and hopes the pounds keep accumulating. But her mother admits to keeping an eye on Nicole’s relationship with food. “I was skinny like her when I was her age and now I’m a good 30 pounds overweight. “She can eat whatever she wants now, but that might not always be the case – so I just want her to know how to eat well,” Kathy says.
There’s the trick of celiac motherhood. My daughter Melanie is now 20 years old, a healthy, active young woman, who definitely watches what she eats (beyond gluten restriction) and exercises regularly. She is a perfect weight, but if you ask her she might tell you she sometimes feels fat. She may sometimes deliberately shed a few pounds.
I don’t worry, since this is within the normal spectrum of a girl’s journey into womanhood. While gluten has been banished from her diet for 18 years, my daughter has a healthy love of food.
But that is not the case for everyone with celiac disease. For those who struggle with food-related pain, fear or body image, the risk of developing an eating disorder is real. Golden says that telling young children with celiac disease that food containing gluten may make them feel pain or discomfort won’t cause an eating disorder.
However, if children or adolescents deliberately adopt a habit of avoiding gluten-free food – especially if it is recommended to help them gain or maintain a healthy weight, that is a concern and should be addressed. Other warning signs of an eating disorder include falling off normal growth curves, suspicion of intentional vomiting and the use of diet pills or laxatives.
When there are such signs, Golden says a proper evaluation should involve a multi-disciplinary team, including a psychologist or psychiatrist, a pediatrician or adolescent medicine specialist, plus a dietitian. “Having celiac and an eating disorder just makes it harder to treat, but you have to treat both,” he emphasized. “And you can treat an eating disorder with a gluten-free diet.”
*The names of Karen and Sarah have been changed for privacy.