She said more allergists need to be familiar with the insidious and dramatic symptoms of non-IgE food allergies like FPIES.
"There are no hives or wheezing and they may vomit 15 to 20 times," said Nowak-Wegzren. "They look very sick and their coloring is off and they are gray and ashen and their blood pressure may drop. Some go into shock and end up in the emergency room."
FPIES can also increase the white blood cell count, mimicking infection, so children are subjected to a variety of unnecessary tests.
"It's not uncommon to have children come in three or four times on an ER visit before the mother notices every time she gives her child rice, this is happening."
Such was the case with Jennifer Trovato.
Trovato had to stop nursing Tyler when he was three or four months old. Doctors were baffled when they found blood in his stool but could find no cause. The pediatrician put the baby on a special formula.
"He was having a reaction, but we didn't know it was an allergic reaction," said Trovato. "We were so confused. We didn't even think allergy because he went through it so many hours later."
At 11 months old, he was still only eating formula.
"He was such a great baby, but he would wake up constantly during the night because he was hungry and we couldn't dive him even a Cheerio because he would get a reaction," she said.
None of his doctors could pinpoint the problem. Slowly, the family introduced a food or two he could tolerate, but still, Trovato said, "We were at our wit's end."
At one point Tyler ate just a small amount sweet potato and had a violent reaction. "It was like extreme food poisoning," she said. "He was pale and lethargic and just lay there. I was a nervous wreck."
Trovato called the pediatrician, who knew the episode would pass. It did and his color came back. But soon after, on a family vacation in Atlantic City, he had a reaction so severe, Tyler's parents took him to the emergency room and he was transferred to a pediatric hospital.
There, an allergist recommended an evaluation at Mt. Sinai where he was eventually admitted and diagnosed.
"Dr. Nowak-Wegzren said it was one of the most severe cases she had ever seen," said Trovato.
Since then Tyler, now in first grade and a big Yankees fan, has outgrown some of his original food allergies.
"He's come a really long way," said his mother. "He can eat wheat, cheese and milk products, plus corn and apples."
"The local pizzeria knows us because if I call and order, they know to use a clean cutter," said Trovato. "One time he had a bad reaction, so I have to be really sure it's clean before they slice it and sometimes I have to wait around for a new pie to come. You would be surprised at all the things he is allergic to, so we have to be careful not to cross contaminate."