April 1, 2013— -- Tyler Trovato loves his peanut butter and jelly sandwiches with a glass of milk, but if he diverges from that and only a handful of other foods, the 6-year-old goes into a fit of vomiting and lethargy so severe that he has to go to the emergency room.
The St. James, N.Y., first-grader is allergic to just about everything else -- chicken, turkey, rice, sweet potatoes and bananas, among others. As an infant, he was even allergic to his mother's breast milk and she was a vegetarian.
Since he was 18 months old he has to be hospitalized before he can try a new food.
If he ingests a food he is allergic to, Tyler begins to have stomach pains about two to four hours after ingestion and then vomits, sometimes so violently he bleeds. Diarrhea follows and a then a shock-like response.
"He becomes pale, lethargic, doesn't talk and usually stumbles when he walks," said his mother, Jennifer Trovato, 37. "When he reacts he needs fluids. The hospital usually gives him saline, steroids and sometimes Benadryl. He doesn't require an epi-pen but his allergic reaction can be life threatening."
Peanuts and dairy products are notorious offenders for children with food allergies, but few parents and doctors are aware of a much more insidious food allergy that many in the pediatric community have never heard of.
Tyler has food protein induced entercolitis syndrome or FPIES. The allergy does not cause a typical immune response and therefore is often missed by pediatricians and allergists.
Experts have no idea how many children suffer from FPIES and there is no diagnostic code to help doctors identify it.
In FPIES, there is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food, even rice and oats, can cause a reaction.
Unlike most food allergies, an FPIES reaction is delayed and usually begins two hours after ingestion of food culprits.
In an IgE mediated food allergy, a child develops symptoms almost immediately after eating. And when blood and skin tests are carried out, there is a positive marker.
A non-IgE mediated food allergy like FPIES is especially difficult to diagnose because standard skin and blood testing for specific IgE are routinely negative.
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 mother of another boy with FPIES, Fallon Schultz of Red Bank, N.J., started the International Association for Food Protein Enterocolitis (IAFFPE) so that parents and doctors can learn more about these allergies.
Her son Landon, now 4, can eat only seven foods, along with elemental formula.
One of the association's goals is to obtain an ICD-9 code to help classify an FPIES diagnosis, assist researchers in tracking or identifying patients for clinical studies and to develop new treatments.
That will help researchers like Dr. Anna Nowak-Wegzren of Mt. 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 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."