Allergic to food: Digestive disorder leads to child's feeding tube
For a while, mealtime for Ashley Zundel, 9, consisted solely of turkey, rice, rice milk, potatoes and apple juice a shrinking menu that eliminated peanuts, milk, eggs, soy, corn, then sunflower seeds and pizza and celery.
Recently, she had to give up those five foods. She now relies on a feeding tube for nutrition.
The problem is eosinophilic gastroenteritis, which affects her stomach, intestine and colon, according to her parents, Dallyn and Tammy Zundel, of Orem.
Eosinophils are the smallest group of white blood cells, important for their battle against parasites in particular. They are named after the Greek god of dawn, Eos, because they turn bright pink-red when stained for viewing with a microscope.
In people with eosinophilic disorders, the number of the cells greatly increases, causing inflammation and related problems. Many of them also have asthma or eczema, although Ashley has neither.
Her brother, Preston, 7, has a milder form that affects only his colon, called eosinophilic colitis. He also has asthma.
There are a number of eosinophil-associated gastrointestinal disorders, according to the American Partnership for Eosinophilic Disorders (www.apfed.org). What you have depends on where the eosinophils are elevated. And true diagnosis can only be made by endoscopy and biopsy.
Dr. Gerald Gleich, a professor of dermatology and medicine at the University of Utah and a self-described "eosinophilomaniac" with more than 600 articles published on the topic, describes symptoms that include nausea, vomiting, abdominal pain, urgency to go to the bathroom and more. As it goes along, the intestine can "be afflicted to the point where it begins to leak protein. Ordinarily, the intestine is a one-way street, absorbing things."
The prolonged inflammation leads to less effective absorption and protein leakage. The most common treatment, once the diagnosis is confirmed by elevation in the number of blood eosinophils, is corticosteroids, which can "stop it in its tracks. In the short run, it's wonderful. But unless you understand what's going on, the short run becomes the long run," Gleich says. Long-term steroid use brings a "passel of difficulties," including cataracts, thinning of bones and skin, high blood pressure, weight gain and more.
Food-allergy tests help guide treatments, and certain foods may be eliminated. Doctors sometimes prescribe an "elemental diet," with no proteins or complex carbohydrates. An elemental diet has, instead, monosaccharides, very simple fats.
"It's not something you sit down with friends and chew and eat with a fork. You drink it" or receive it through a feeding tube. But often people weary of no food and go back on steroids.
Not all people with a form of eosinophilic disorder respond to the same treatment. There's great variation in both the degree of symptoms and the response to treatment.
The condition is not inherited. It can wax and wane. Sometimes food allergies are easy to spot; other times, there's no evident allergy at all. Many of the patients with an eosinophilic condition have allergies, hay fever, asthma, chronic hives, gastric reflux or atopic dermatitis, "a mark of the propensity of their immune system to react to things."
Those conditions can also wax and wane. If it becomes persistent, Gleich says, it's a considerable problem.
A human antibody mepolizumab taken intravenously shows promise of eliminating or reducing the need for corticosteroid treatment. But it's still in the study stage.
The most common form that Dr. Molly O'Gorman, an associate professor of pediatrics and a practitioner at Primary Children's Medical Center, sees is eosinophilic esophagitis.
A clinical trial is looking at whether the human antibody reslizumab helps with eosinophilic esophagitis by reacting against Interleukin-5, believed by some to be why eosinophils "get recruited into the esophagus," she says.
Children with eosinophilic esophagitis may be placed on a proton pump inhibitor to reduce reflux. If food allergies seem to be involved, they try an elimination diet to see if that resolves it. Unfortunately, allergy testing a lot of times isn't positive. They may move to a swallowed steroid.
When nothing else works, they eradicate it with elemental formula fed through a gastric tube and no regular food. "It's not a satisfactory lifestyle," O'Gorman says. "I've never had a patient die of the disorder, but it's miserable and disrupting. It can also lead to scarring of the esophagus."
Babies are more prone to eosinophilic colitis. But eosinophilic disorders can affect any age.
Even when she was tiny, Ashley had diarrhea. As she got older, she complained of stomachaches. Doctors initially thought she had celiacs disease, an intolerance for gluten, but a strict no-gluten diet brought no change. Since no one had any idea what else they could do for a while, they did nothing, her mom remembers.
"We were hoping it would go away. It got worse. She was complaining of stomachaches all the time. She'd miss school in the middle of the day," she says.
Ashley had three endoscopies, amid suspicion of celiac or irritable bowel or Crohn's. Then she was diagnosed with an inordinately high number of the eosinophils, which had settled in her digestive tract and were reacting to foods.
She'd always been an active child despite the condition and she remains so. Her mom said she was depressed when she first started on the feeding tube. She's doing better now and has even gained 5 pounds, but she's still a very light 45 pounds, small for a third grader.
And she misses food. By mouth she gets only ice and sugar water. The hope is that the feeding-tube formula will allow the symptoms to back off, the eosinophils will go down in number and she can be reintroduced to foods, "one at a time, like a baby," Tammy Zundel says.
And it does mean she gets nutrition. Since she does much of her feeding as she sleeps, there's less disruption in her life. She's in school, although she's not socializing like she used to," her mom says. "The nose tube bothers her."
But the other children are generally very accepting. When she got the tube, her parents went with her to school for a "little show and tell about what it was and why she doesn't drink the formula. It tastes so nasty."
The fact that she's a sunny child helps immeasurably, her mom says.
The formula is expensive, though, and Dallyn's employer, RH Donnelly, has yet to reach an agreement with its insurance company to allow coverage of it.
As for Preston, the condition is recent. Last summer, he had cryptosporidium twice and they think it "kick-started" it as the eosinophils rush to attack the parasite. When the parasite was gone, they remained in high numbers, something that also reportedly happens sometimes with other conditions, including mononucleosis.
He can no longer have milk "in any way, shape or form." Citrus is out. He pays for it, in great pain, a couple of days later.The Zundels are starting a support group for people with eosinophilic conditions. They plan an April 29 meeting at Intermountain Medical Center in Murray, 5121 S. Cottonwood, in the Doty Education Building east conference room.
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