For Kids With Rare Condition, 'Restricted' Diets Can Turn Dangerous

Two young patients -- one 3 and the other 13 -- have a rare condition that calls for a highly restricted diet. Both have so much trouble eating that they developed an eating disorder and required feeding tubes, a new report shows.

Such is the fate of some of those with eosinophilic esophagitis (EOE), a chronic inflammatory disease that affects the tube running from the mouth to the stomach. A specific type of white blood cell (eosinophil) accumulates in the esophagus, causing difficulty swallowing, pain and vomiting. Having the condition can mean eliminating milk, soy, wheat, eggs, fish and nuts from the diet.

But following such an intense eating regimen can take its toll.

"Many people haven't heard of this condition, but it's rising at an alarming rate here [in Utah]," said study author Dr. Jacob Robson, an assistant professor of pediatrics at the University of Utah.

Robson explained that because there's no specific test to know which foods are causing someone's symptoms in EOE, the six-food elimination diet is one of the treatments.

But, he acknowledged, "The diet doesn't leave you with a lot of foods. You have to work with an expert dietitian. It's really hard."

Dr. Wendy Book, president of American Partnership for Eosinophilic Disorders (APFED), said that most people with EOE can be "successfully treated with the removal of only a few proteins from their diet, most commonly milk."

She added that for a small number of people with EOE, the dietary restrictions can be numerous.

Book said the condition is relatively rare, affecting up to 0.1% of people in the United States.

The new study focused on two children with EOE on restrictive diets. They developed signs of avoidant or restrictive food disorder (ARFID), a newly recognized type of eating disorder. In a past study, Robson and his colleagues identified more than 1,000 cases of EOE diagnosed in the past five years. Of those, 44 showed signs of the new eating disorder.

The first example in the new study was a child diagnosed at 3 years old. His case was so severe he eventually needed to be fed a special formula through a feeding tube. When he reached school age, he wanted to be able to eat like his classmates.

With medications and cognitive behavioral therapy, he was able to start eating a restricted diet again. But, he wasn't eating enough to maintain his weight. He said he wasn't interested in eating, had an aversion to certain textures and tastes, and felt full very quickly. Because of continued weight loss, he had to have supplemental feedings through a feeding tube to maintain his weight.

The second case was diagnosed at 13. He wasn't able to eat wheat, eggs or nuts due to EOE. He also couldn't eat apples, tomatoes and root vegetables due to oral allergy syndrome. In his later teens, the young man had lost significant weight. He expressed concern about not being able to eat enough to maintain his weight, and had to have supplemental nutrition through a feeding tube.

He had cognitive behavioral therapy (a psychological treatment), and was also treated for his overall anxiety (not just food-related) with an antidepressant. Eventually he was able to start eating a wide variety of foods again.

Robson said anyone living with a medically restrictive diet or their loved ones should keep an eye out for a very picky eating pattern -- only eating a few foods, or not eating a lot and just grazing on a few bites at a time.

Book said that if parents have concerns, they should let their child's health care provider know right away. "Do not be afraid to ask for help," she said.

Both experts recommend working with a dietitian familiar with your child's condition.

Book also said it's important to approach the restrictions as a way to better health.

"Try to avoid negative terms such as 'cheating' when discussing diet, and instead focus on the positive: These dietary changes can make them feel better," Book said.

She also recommended involving kids in menu planning, shopping and cooking. And, during holidays or special occasions where people tend to focus on foods, Book said it helps to plan special activities not based on meals, like going to the movies or a family camping trip.

The study was published recently in the Journal of Pediatric Gastroenterology and Nutrition.

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