Skin prick tests show that a majority of those with EoE have an allergic predisposition: they’re sensitized to foods or aeroallergens such as pollen and pet dander. Sometimes they may produce IgE antibodies to certain foods and be at risk of anaphylaxis – or often they may simply be be sensitized to specific food triggers.
In either case, in the patient with EoE, high levels of eosinophils in the esophagus are a big factor that may be overlooked as a doctor makes a diagnosis of food allergy or allergic rhinitis. Left untreated, these cause tissue damage and recurring and painful symptoms.
“Unlike food anaphylaxis – the acute allergic reaction – these patients have chronic activation of the adaptive immune system,” says Rothenberg. “It’s typically not IgE and mast cell activation, but chronic, delayed hypersensitivity that’s triggered by the adaptive T-cells which are responding to the food triggers.”
Also unlike food allergies, where you might see an allergy to one or a few foods, “these patients have an intolerance to multiple foods,” says Rothenberg. “The primary defect is that they become sensitized to multiple, major food groups. Most patients are allergic to at least the Top 8 food allergens; they are driving the disease.”
Quality of life naturally becomes a big issue: “not only are they avoiding milk or wheat or peanut, but they have to get rid of all the top allergenic foods. This has a very big impact,” he says.
As much is this isn’t an easy diagnosis to get, not knowing is worse. Melissa Scott had no idea about this disease when her son Jordan first tested allergic to wheat and milk. Those foods were removed from his diet, but symptoms like reflux and diarrhea remained. Most worrisome was that “he didn’t gain weight from nine months to 18 months,” says this mother, an oncology nurse.
The child’s original pediatrician didn’t have answers, so when she moved back to her hometown of Cincinnati, Scott took Jordan to a pediatrician she knew for his 15-month check-up. The doctor agreed there was an issue, and she got a referral to a gastroenterologist.
By that appointment three months later, Jordan had gained an ounce, and rather than scoping to see what was going on, the specialist suggested keeping an eye on him. But Scott was firm: “I am done with the watching and waiting, something is wrong with my child. Your job is to figure that out, and my job is to be sure you do it.” So the scope was done – but the biopsies came back negative; Jordan was not diagnosed with EoE.
His story is fairly typical. In oral food challenges, the child seemed to have gained tolerance to wheat and milk, so these foods were re-introduced. By 4 years old, Jordan was really unwell, and when he was scoped and biopsied again, eosinophils were there in abundance; EoE was diagnosed. The problem had been that wheat and dairy were his two biggest triggers, and with them out of his diet, his disease wasn’t detected in the original scope.
Today, Scott and Reidy lead the Cincinnati Eosinophilic Family Coalition, a not-for-profit organization and support group of about 80 families. They hear from many parents about a long journey to EoE diagnosis. Scott has this advice: “Call it survival of the species, but in the case of almost every parent we’ve talked to, you’ll know something else is wrong with your child. If it doesn’t feel right, trust that, and keep pushing for the answers.”
With the diagnosis, the real work begins. Rothenberg says treatment for EoE usually starts with removing foods from the diet. There are a couple of approaches to this, the “directed diet”, in which skin tests are used to attempt to gauge which foods the patient is sensitized to and to “direct” the food avoidance.
But more common now as an initial step is the Six Food Elimination Diet, in which the patient stops eating all the top allergenic foods – milk, eggs, nuts (peanuts and tree nuts are grouped), wheat, soy and seafood (fish and shellfish). Rothenberg admits that removing so many foods “is pretty controversial. But skin tests haven’t been as successful in inducing remission.” And with EoE, that’s the aim – to stop the inflammation and have the eosinophils disappear from the esophagus.
Next: More on treatment and psychological effects