In a Swedish celiac disease screening study (Exploring the Iceberg of Celiacs in Sweden), we systematically reviewed the clinical diagnostic procedures with the aim to evaluate the diagnostic accuracy and to take advantage of lessons learned for improving diagnostic routines.
A school-based celiac disease screening study involving 5 Swedish centers, with 10,041 invited 12-year-olds with 7567 consenting participation. All 192 children with elevated serological markers were recommended to undergo small-bowel biopsy, performed and evaluated according to local clinical routines. All of the mucosal specimens were reevaluated by 1 and, when needed, 2 expert pathologists to reach diagnostic consensus.
Small-bowel biopsies were performed in 184 children: 130 by endoscopy and 54 by suction capsule. Endoscopic biopsies were inconclusive in 0.6%, compared with 7.4% of biopsies by suction capsule. A patchy enteropathy was found in 9.1%. Reevaluation by the expert pathologist resulted in 6 additional cases with celiac disease and 1 cleared. Sixteen children with normal or inconclusive biopsies, 4 after endoscopy, and 12 after suction capsule were endoscopically rebiopsied, resulting in another 8 cases. The celiac disease prevalence of 30 of 1000 (95% confidence interval 26–34) was not statistically different from that previously reported.
The present review revealed the importance of controlling each step of the diagnostic procedure. Several cases would have been missed by relying only on local routines. To improve the quality of childhood celiac disease diagnostics, we recommend multiple endoscopic biopsies from both proximal and distal duodenum and standardized evaluation by a pathologist with good knowledge of celiac disease.
*Department of Pediatrics, Lund University, Lund, Sweden
†Clinical Pathology and Cytology, Helsingborg Hospital, Helsingborg, Sweden
‡Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden
§Pediatric Outpatient Clinic, Norrtälje Hospital, Norrtälje, Sweden
||Pediatric Clinic, Norrköping Hospital, Norrköping, Sweden
¶Pediatric Clinic, Växjö Hospital, Växjö, Sweden
#Division of Pediatrics, Department of Clinical and Molecular Medicine, Linköping University, Linköping, Sweden
**Department of Clinical Sciences, Pediatrics, Umeå University, Umeå, Sweden.
Received 16 April, 2010
Accepted 30 August, 2010
Address correspondence and reprint requests to Dr Olof Sandström, PhD, MD, Department of Public Health and Clinical Sciences, Epidemiology and Global Health, Umeå University, Umeå, S-90185, Sweden (e-mail: firstname.lastname@example.org).
The study was performed in cooperation with the County Councils of Skåne, Kronoberg, Östergötland, Stockholm and Västerbotten, and was undertaken within the Centre for Global Health at Umeå University, with support from FAS, the Swedish Council for Working Life and Social Research (2006–1512).
The authors report no conflicts of interest.