Imagine having a food allergy condition so severe that you could only eat a few select foods without vomiting uncontrollably, developing extreme fatigue and becoming gravely ill. This is what young Tyler Trovato of St. James, New York, and a growing number of American children now face, as an extreme food allergy condition known as Food Protein Induced Enterocolitis Syndrome (FPIES) spreads across the country.
In Tyler’s case, the few foods he can eat safely just so happen to be common allergens for people with typical food allergies — peanut butter and milk are among the few foods Tyler can eat. But things like chicken, turkey, bananas, rice, sweet potatoes, and most other foods are off limits for Tyler, as they cause him to develop severe stomach pains just a few hours after eating them.
Unlike those with common food allergies, people with FPIES do not typically have an immediate reaction to offending foods. It often takes several hours for a reaction to show, upon which extreme symptoms like vomiting, diarrhea, and even bleeding occur, which can result in hypovolemic shock, or the inability of the heart to pump enough blood throughout the body due to blood and fluid loss.
“He becomes pale, lethargic, doesn’t talk and usually stumbles when he walks,” says Jennifer Trovato, Tyler’s mom, about what happens when he has a reaction. “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.”
Standard allergy testing often misses FPIES and other non-IgE allergy conditions
What is even stranger is that standard allergy testing methods often do not detect the condition because it does not elicit the same immune response as common allergies. As a result, many doctors and pediatricians fail to identify it, and parents, who are used to identifying allergies as an immediate negative response to exposure, often overlook it as well.
“In an IgE (immunoglobulin E) mediated food allergy, a child develops symptoms almost immediately after eating,” explains ABC News‘ Susan Donaldson James about the issue. “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.”
This means that the process of identifying and remedying FPIES is often long and painful, especially for sufferers who do not even realize they have the condition. At this point in time, there is not even an International Statistical Classification (ICD) code for FPIES, although the International Association for Food Protein Enterocolitis (IAFFPE), which was started by a mother of a child with FPIES, is in the process of trying to obtain one.
“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,” says Dr. Anna Nowak-Wegzren of Mt. Sinai Medical Center in New York City. “Because these allergies are so elusive, pediatricians don’t know about them. We are trying to raise awareness.”
Some children with FPIES have reportedly been able to outgrow at least a few of their food allergies over time, with some parents slowly introducing certain foods that their children are able to eventually tolerate. And one commenter on an ABC News report of FPIES explains the success of a friend who was able to utilize Dr. Natasha Campbell’s “GAPS Diet” to heal her child’s gut and help her overcome FPIES.
You can learn more about the GAPS Diet here:
Ethan A. Huff
Sources for this article include: