A Slice of Food Protein–Induced Enterocolitis Syndrome (FPIES): Insights from 441 Children with FPIES as Provided by Caregivers in the International FPIES Association

Background: Food protein–induced enterocolitis syndrome (FPIES) is a non–IgE-mediated gastrointestinal food allergy. There is little known about the demographic characteristics, food triggers, and risk factors for FPIES. Objective: To characterize the demographic characteristics, food triggers, risk factors, and management in children with FPIES. Methods: We retrospectively analyzed surveys completed by 410 caregiver-members of the International FPIES Association, both at a conference for families affected by FPIES and online. Results: Most of the children were female (50.7%), white (86.2%), and atopic (54.8%), with a median age of 2 years (ranging from 2 months to 19 years). The most common food groups avoided were grains (60.0%), cow's milk (52.4%), vegetables (42.7%), and fruits (38.0%). Avocado was the most commonly avoided fruit. Avoiding avocado was associated with increased likelihood of avoiding banana (P < .001). Of these children, 69.4% avoided at least 2 food groups because of FPIES, and 20.3% had a first-degree relative with FPIES. Having a first-degree relative with FPIES was associated with increased likelihood of avoiding multiple food groups (P = .035). Conclusions: The most common food group avoided was grains, consistent with recent literature. Avocado avoidance was higher than previously reported, and this is the first report of an association between avocado and banana avoidance in FPIES. Avoiding multiple food groups because of FPIES was more common than previously reported. A large proportion of children in our cohort had first-degree relatives with FPIES, and, furthermore, having a first-degree relative with FPIES was significantly associated with the affected child avoiding multiple food groups.