‘Food is the enemy’: Rare digestive disorder leaves Great Falls teen struggling to eat

A relatively newly described syndrome that affects a small number of people is attracting growing attention among doctors and researchers and is responsible for a series of unexpected changes for a Great Falls family.

The group of diseases, called eosinophilic gastrointestinal disorders, or EGIDs, was recognized sporadically by doctors throughout the 20th century. But only in the past two decades have the disorders captured the attention of the medical community.

“These are certainly new, and it is uncommon for us to have relatively new diseases,” said Dr. Glenn Furuta, professor of pediatrics and director of the Gastrointestinal Eosinophil Diseases Program at Children’s Hospital Colorado and the University of Colorado School of Medicine.

Fifteen-year-old Miyah Lovec has lived with the diseases her entire life.

“It started before she could talk — vomiting, constipation, hives, eczema,” said her mother, Becky Sullivan.

The feeding problems caused Lovec to grow slowly, what is referred to as “failure to thrive” today. Sullivan chalked it up at the time to having petite relatives on her father’s side.

The symptoms continued, and Lovec was put on medication for ADHD when she was young. The Sullivans were told Lovec’s symptoms may be side effects from the ADHD medication, but when Lovec stopped taking it as a sixth-grader, the symptoms persisted.

“I just ignored it,” Lovec said. “I thought I was sick.”

Even through the discomfort and bouts of sickness, Miyah has thrived and lives the life of a typical teen. She has a dry sense of humor and is a little embarrassed by her family, which includes her parents, Michael and Becky Sullivan, and younger sister, Eva, 8.

A student of art, she often draws on her arms and legs, giving herself colorful, temporary tattoos. In her free time at school, she likes to help teachers in the special education room. And she hangs out with friends, roller skating, and likes playing games on the computer and her phone.

Last summer, Lovec’s pediatrician referred her to a gastroenterologist in Billings, who, after a round of tests, including an endoscopy of her esophagus, finally provided Lovec with a diagnosis — eosinophilic esophagitis, eosinophilic colitis and eosinophilic gastritis.

That means Lovec has elevated levels of eosinophils in her esophagus, her lower colon and her stomach.

Eosinophils are white blood cells typically associated with allergic disease and parasitic infection, Furuta said.

Normally, eosinophils are present in all portions of the digestive tract except the esophagus. In eosinophlic diseases, their presence is elevated, causing inflammation or irritation of the area and causing the patient to display a host of symptoms that might include vomiting, reflux or food impaction in the upper digestive tract; or diarrhea, pain or bloody stool in the lower digestive tract.

Doctors know EGIDs affect both children and adults, and it is not a disease a child grows out of, Furuta said.

The most common EGID is eosinophilic esophagitis, known as EoE. For that disorder, male patients are known to outnumber female patients about three to one, and one to four out of every 10,000 people are affected.

The other EGIDs are so rare that exact numbers are more difficult to pin down, Furuta said.

The exact cause of EGIDs and the most effective treatment remain elusive.

EGIDs are “often associated with allergies but may be associated with unknown reactions that can cause significant symptoms in children,” Furuta said.

He added there may be a genetic component to EGIDs, too. Perhaps the people who have an EGID were born with a gene that predisposed them to the condition, and with an allergen or trigger the condition developed fully.

Eosinophilic esophagitis, or EoE, is the most common and most studied of the EGIDs, Furuta said. Symptoms of EoE often can be improved with diet modifications, but for people for whom that does not work, steroids may be prescribed.

Treatments differ for the other EGIDs, EC, EG and eosinophilic gastroenteritis, or EGE, but may follow a pattern of diet modification that may be coupled with steroids or other treatments.

Luckily, EGIDs are not life-threatening, but they can have a big effect on quality of life, Furuta said. But, he also pointed out that for EoE, about 75 percent of patients are able to find a dietary or medical way to control symptoms.

Lovec’s doctor in Billings and an allergist in Helena recommended she stop eating eight common allergens — dairy, soy, gluten, tree nuts, peanuts, eggs, fish and shellfish — and corn.

Since last summer, Lovec has been eating a diet consisting mostly of chicken and potatoes, along with a nutritional supplement drink free of known allergens called Neocate Splash.

“It tastes like baby formula with a tropical fruit flavor,” Michael Sullivan said.

It isn’t particularly appetizing, and a case of 27 drink boxes costs $132. The family’s insurance doesn’t cover the Neocate because it is considered food, Becky Sullivan said.

“It’s hard when food is the enemy,” Becky Sullivan said.

Every holiday, every get-together or summer barbecue centers around food. Eating at a restaurant is next to impossible. Those nine foods Lovec cannot eat sneak into the ingredients of just about everything. Fast-food french fries may contain dairy, grease that food is fried in is sometimes corn-based, for example.

Becky Sullivan commended Great Falls Public Schools for accommodating her daughter’s dietary needs at school.

“It’s a very frustrating, horrible disease that every day we hate more and more,” she said.

Lovec will travel with her family to see a team of interdisciplinary specialists at the National Jewish Hospital in Denver, maybe as soon as this month, to receive a treatment plan for her conditions. The family remains optimistic.

“It can’t get any worse,” Becky Sullivan said jokingly.

The Sullivans are planning to sell their house and move into a smaller apartment, with proceeds from the sale going to pay off some student debt so they can focus on treating Lovec’s condition.

The Sullivans say they are fortunate to have insurance coverage, but they know insurance won’t cover all the costs of the treatment in Denver, let alone travel, lodging and meals.

“We don’t know what will be covered or not,” Becky Sullivan said. “We don’t know until they start billing things.”

But the family remains optimistic. And, according to Furuta, they should.

Research into EGIDs has exploded the past several years, and in 2007 the first diagnostic criteria for EGIDs was established.

Online communities of patients have proliferated, too. The American Partnership for Eosinophilic Disorders promotes awareness and research, for example. Parents and adult patients can communicate, sharing stories of their successes and frustrations with the disorders.

“For patients who are affected by these diseases there should be a lot of hope,” he said. “There’s an enormous amount of progress made in the last decade to helping care for patients.”

Furuta pointed out that many researchers regularly collaborate and share information, which isn’t always the case in scientific research. He looks forward to more advances.

“I was taking her to school one day and was feeling bad — I think I had just tasted her formula for the first time,” Becky Sullivan said. “I said, ‘I’m sorry, Miyah, that you have this.'”

Lovec, however, was unfazed.

It’s OK, she said. I’m young enough; they’ll find a cure.

– Briana Wipfl (source greatfallstribune.com)