Tyler saw two pediatric allergists and two gastroenterologists before anyone could figure out what was making the little boy so sick, because all the standard allergy tests came back negative. Finally, at 18 months, he was diagnosed.
"It was stressful for us as parents," said Trovato, a kindergarten teacher. "We knew there was something wrong. Now we are part of a study, and we are glad to do it, educating others."
The new diagnostic code will help researchers like Dr. Anna Nowak-Wegzren of Mount Sinai Medical Center in New York City to learn more about these allergies and to find better treatments. Right now, doctors can only do "challenge testing" -- slowly introducing a child to a new food and waiting to see the reaction and to supplement the diet with elemental formula.
"We don't have good data about the prevalence of these disorders, and studies can be very expensive, since there is not an easy test," said Nowak-Wegzren, who is treating Tyler. "Because these allergies are so elusive, pediatricians don't know about them. We are trying to raise awareness."
She said more allergists need to be familiar with the insidious and dramatic symptoms of non-IgE food allergies.
"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."
Still, Tyler, a big Yankees fan and now in first grade, is doing well. He 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."