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Food protein-induced enterocolitis syndrome in the British Isles

Food protein-induced enterocolitis syndrome in the British Isles
Food protein-induced enterocolitis syndrome in the British Isles
Background: food protein-induced enterocolitis syndrome (FPIES) is a delayed type of food allergy, most often seen in infancy. We aimed to estimate its incidence, to describe common food triggers and the patient journeys of this rare but serious condition.

Design: we undertook a prospective epidemiological survey of FPIES using the British Paediatric Surveillance Unit.

Setting: UK and Ireland.

Participants: a survey of all paediatricians over 13 months between January 2019 and February 2020.

Main outcome measures: 204 cases were reported, 98 (48%) meeting case definition, giving an incidence of 0.006% for England based on 93 cases.

Results: 98 patients reported 135 trigger foods, 27% (26 of 98) had multiple food triggers. Common food triggers included cow’s milk (24%, 33 of 135), fruits and vegetables (19%, 26 of 135), hen’s egg (16%, 22 of 135) and fish (14%, 19 of 135). In 46% (41 of 90), the initial trigger food had been ingested three or more times before diagnosis, with a median diagnostic delay of 7.9 months (3.0, 17.3). Half (50 of 98) were admitted, yet only 5% (5 of 98) received appropriate acute treatment with ondansetron. Most cases were diagnosed by an allergy specialist (74 of 98, 76%), within a median of 7.5 (3.0, 13.3) miles from home.

Conclusion: the incidence of FPIES was significantly lower than expected across the whole of the British Isles. Most reports were of cases local to specialist allergy centres, with delays in diagnosis. This suggests under-recognition of FPIES in frontline clinical setting where education of healthcare professionals is required to improve recognition, earlier diagnosis and treatment.
0003-9888
123-127
Stiefel, Gary
2cb1ba1d-be0c-495e-b65a-aaf54b865eba
Alviani, Cherry
32a5985d-da5c-48e4-a098-5374d3546e77
Afzal, Nadeem A.
ec42125f-b7fc-484e-809f-beda2163d3a8
Byrne, Aideen
88343cf9-8749-4736-9590-e46da821d07c
Toit, George du
49bc308a-9334-41ff-be2d-5e3cb8778099
DunnGalvin, Audrey
cb3a7df5-feb4-414a-b528-459c52dd2a80
Hourihane, Jonathan
6410730b-08ea-4fd3-8187-f2539a0dfd33
Jay, Nicola
92af7f3e-619b-41ca-9592-4f757ef8bb04
Michaelis, Louise Jane
8e4308eb-eaba-4675-aa54-2c8c6057c88c
Erlewyn-Lajeunesse, Michel
e1763b6d-165b-45c5-9108-5dc8722220b9
Stiefel, Gary
2cb1ba1d-be0c-495e-b65a-aaf54b865eba
Alviani, Cherry
32a5985d-da5c-48e4-a098-5374d3546e77
Afzal, Nadeem A.
ec42125f-b7fc-484e-809f-beda2163d3a8
Byrne, Aideen
88343cf9-8749-4736-9590-e46da821d07c
Toit, George du
49bc308a-9334-41ff-be2d-5e3cb8778099
DunnGalvin, Audrey
cb3a7df5-feb4-414a-b528-459c52dd2a80
Hourihane, Jonathan
6410730b-08ea-4fd3-8187-f2539a0dfd33
Jay, Nicola
92af7f3e-619b-41ca-9592-4f757ef8bb04
Michaelis, Louise Jane
8e4308eb-eaba-4675-aa54-2c8c6057c88c
Erlewyn-Lajeunesse, Michel
e1763b6d-165b-45c5-9108-5dc8722220b9

Stiefel, Gary, Alviani, Cherry, Afzal, Nadeem A., Byrne, Aideen, Toit, George du, DunnGalvin, Audrey, Hourihane, Jonathan, Jay, Nicola, Michaelis, Louise Jane and Erlewyn-Lajeunesse, Michel (2022) Food protein-induced enterocolitis syndrome in the British Isles. Archives of Disease in Childhood, 107 (2), 123-127. (doi:10.1136/archdischild-2020-320924).

Record type: Article

Abstract

Background: food protein-induced enterocolitis syndrome (FPIES) is a delayed type of food allergy, most often seen in infancy. We aimed to estimate its incidence, to describe common food triggers and the patient journeys of this rare but serious condition.

Design: we undertook a prospective epidemiological survey of FPIES using the British Paediatric Surveillance Unit.

Setting: UK and Ireland.

Participants: a survey of all paediatricians over 13 months between January 2019 and February 2020.

Main outcome measures: 204 cases were reported, 98 (48%) meeting case definition, giving an incidence of 0.006% for England based on 93 cases.

Results: 98 patients reported 135 trigger foods, 27% (26 of 98) had multiple food triggers. Common food triggers included cow’s milk (24%, 33 of 135), fruits and vegetables (19%, 26 of 135), hen’s egg (16%, 22 of 135) and fish (14%, 19 of 135). In 46% (41 of 90), the initial trigger food had been ingested three or more times before diagnosis, with a median diagnostic delay of 7.9 months (3.0, 17.3). Half (50 of 98) were admitted, yet only 5% (5 of 98) received appropriate acute treatment with ondansetron. Most cases were diagnosed by an allergy specialist (74 of 98, 76%), within a median of 7.5 (3.0, 13.3) miles from home.

Conclusion: the incidence of FPIES was significantly lower than expected across the whole of the British Isles. Most reports were of cases local to specialist allergy centres, with delays in diagnosis. This suggests under-recognition of FPIES in frontline clinical setting where education of healthcare professionals is required to improve recognition, earlier diagnosis and treatment.

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More information

Accepted/In Press date: 11 August 2021
e-pub ahead of print date: 26 August 2021
Published date: 2 October 2022

Identifiers

Local EPrints ID: 508241
URI: http://eprints.soton.ac.uk/id/eprint/508241
ISSN: 0003-9888
PURE UUID: 81b32b9b-13a8-4b4c-a472-311a4098a5d3
ORCID for Michel Erlewyn-Lajeunesse: ORCID iD orcid.org/0000-0003-1982-1397

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Date deposited: 15 Jan 2026 17:37
Last modified: 16 Jan 2026 02:55

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Contributors

Author: Gary Stiefel
Author: Cherry Alviani
Author: Nadeem A. Afzal
Author: Aideen Byrne
Author: George du Toit
Author: Audrey DunnGalvin
Author: Jonathan Hourihane
Author: Nicola Jay
Author: Louise Jane Michaelis
Author: Michel Erlewyn-Lajeunesse ORCID iD

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