“Skin tests can be useful in terms of adding back foods,” he says, “because the goal is to get the patient to remission, and then start adding foods back, one at a time.” For young children who’ve had growth delay, a specialist may go beyond the Six Food Elimination Diet, turning instead to the elemental formula with no protein molecules to set off the immune system. In Reidy’s son’s case, he was able to drink it but, as it doesn’t taste good and a 2-year-old normally requires 43 ounces a day (or 24 ounces if eating a few solids), some children get their formula through a feeding tube.
Going to the feeding tube, or even just formula, brings issues. Kids have often been on solids, and miss that food and eating. Scott and Reidy tell stories of mothers who hide in the bathroom to eat their own food. “Sometimes, it’s easier than dealing with a tantrum and the demands: ‘Can I have?’ ‘But I want,’” says Scott. “You can’t explain the disorder to a 2-year-old.”
Reidy’s son did quite well with the transition to formula, “except for one evening when it hit him that he wasn’t eating,” she says. “He began panicking, trying to eat anything he could get. There’s that innate feeling of wanting to chew. It was short-lived and once he began to notice he was feeling better, he was fine with just formula.” Today, Adam has his 20 foods and still drinks formula as a nutritional supplement.
EoE treatment options are emerging, and fortunately some patients are responding well to corticosteroids, the medication used in controlling asthma or eczema, but in this case the drug from an inhaler is swallowed. “We bathe the esophagus in that medication, so it is akin to corticosteroids on the skin,” explains Rothenberg.
Experts and families all say there’s a profound psychological side to this disease, and not just because of the level of food avoidance. At least once a year, a specialist will direct families to try adding a few foods back, one at a time, over several weeks or months. Then the patient goes for a new round of scope and biopsy. It can be liberating – or deflating.
“My son trialed blueberries and oranges and was able to eat them,” notes Reidy. “Then he had a scope last winter, and he failed it. So he can no longer eat blueberries and oranges.” It’s confusing to explain to others, and mentally exhausting for the families to do this year after year. “It can wear on the child and the family,” she notes.
While the disease is not life-threatening, Scott says that “it certainly is life-altering”. Yet management of it can make such a huge difference. As with food allergies, once these children are away from their triggers, they can enjoy good health.
Rothenberg speaks of one case in which a 4-year-old with failure to thrive was put on swallowed corticosteroids. To everyone’s amazement, within a couple of months, the child crossed three growth chart percentile lines and was caught up in size. Adam with his 20 foods is also a robust young guy, who’s an active soccer player. As his mother says: “You’d never know anything was different – unless you sat down with him at a table.”
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