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Diagnosis of celiac disease is being missed in over 80% of children particularly in those from socioeconomically deprived backgrounds

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Abstract

Population-based screening studies have documented prevalence of celiac disease (CD) at 1% at age 7 years, but 90% of children remain undiagnosed. This prospective cohort study aims to examine whether observed differences in diagnosis rates of CD exist between children from different socioeconomic groups and how this has changed over a 12-year period. All children aged ≤15 years with a postcode within South West of England (SWE) diagnosed with CD during a 12-year period (1999–2010) when all diagnoses were based on endoscopic histology were included in the study. The incidence rates in socioeconomic groups were determined using the Index of Multiple Deprivation Score and Office of National Statistics population data. Four hundred fifteen children were diagnosed with CD; 65 within the City of Bristol (CoB). Diagnosis rate rose 4.2 times in SWE and 3.1 times in CoB between the first and last 4 years of the study. The rate was 1.6 times higher in the least socioeconomically deprived compared to most deprived (2.2 times in CoB), and the gap widened over the 12 years. Missed cases estimates for CoB and SWE are at least 83% and 91%, respectively.

Conclusion: These findings suggest that while incidence of diagnosed CD in children has increased over a 12-year period, 83–91% remained undiagnosed. Socioeconomically deprived children are more likely to be underdiagnosed, and the gap between the least and most deprived has widened. To fully address massive underdiagnosis, further strategies including pilot studies using finger prick serological mass screening for CD in children entering primary schools are needed.

What is Known:
Epidemiological studies record a 1% prevalence of celiac disease (CD), but up to 90% of children may remain undiagnosed.
Previous studies have documented an increased incidence of CD in higher socioeconomic groups, but proposed reasons remain conflicting.
What is New:
Incidence of diagnosed CDhas gone up across all social classes but more so in higher socioeconomic groups and there is an increasing health/wealth gap.
This study estimates that 83–91% of children with CD are still being missed despite improved and easily available serological testing and suggest that population screening should be reconsidered.

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Fig. 1

Data Availability

Available on request from Dr. Whitburn.

Change history

  • 23 February 2021

    The sections What is Known and What is New in the pdf version has been updated.

Abbreviations

ALSPAC:

Avon Longitudinal Study of Parents and Children

BRHC :

Bristol Royal Hospital for Children

CD:

Celiac disease

CoB:

City of Bristol

DGH:

District General Hospital

ESPGHAN:

European Society of Paediatric Gastroenterology, Hepatology and Nutrition

HLA:

Human leukocyte antigen

IMD:

Index of Multiple Deprivation

LSOA:

Lower Layer Super Output Area

NASPGHAN:

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition

ONS:

Office of National Statistics

PALGA:

Pathologisch Anatomisch Landelijk Geautomatiseerd Archief

RR:

Relative risk

SWE:

South West of England

UK:

United Kingdom

USA:

United States of America

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Authors

Contributions

JW: Data collection and analysis, prepared manuscript and literature review;SRR: Data analysis and statistical calculation;SPP: Prepared first draft, revised subsequent drafts, literature review, correspondence and online submission;BKS: Project concept, supervision, edited manuscript and provided expert opinion. All the authors have approved the final manuscript.

Corresponding author

Correspondence to Siba Prosad Paul.

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This study was conducted as a service review with approval from the local audit department.

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Not applicable as no patient data was collected.

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The authors declare no competing interests.

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Whitburn, J., Rao, S.R., Paul, S.P. et al. Diagnosis of celiac disease is being missed in over 80% of children particularly in those from socioeconomically deprived backgrounds. Eur J Pediatr 180, 1941–1946 (2021). https://doi.org/10.1007/s00431-021-03974-8

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Keywords

  • Celiac disease
  • Socioeconomic
  • Health/wealth gap
  • Missed diagnosis
  • Child
  • Biopsy