Adherence to celiac diagnostic guidelines: results from the German Celiac Registry (GeCeR)

Background Guidelines for celiac disease (CeD) diagnosis request positive CeD specific autoantibodies against tissue-transglutaminase (TGA) or endomysium (EMA) and Marsh 2/3 lesions. Since 2012, the pediatric guidelines by ESPGHAN allow diagnosis without biopsies if < 18 years, TGA-IgA ≥10x normal and positive EMA in 2^nd blood sample.

Aim We aimed to analyse data from the German Celiac Registry (GeCeR) for guideline conform diagnosis.

Methods CeD patients with completed self-reported baseline information received questionnaires on diagnostic work-up filled by their physicians. We divided participants into 4 groups: CeD diagnosis as adult prior (G1) or after (G2) 2012, and as child aged < 18 years prior (G3) or after 2012 (G4) 2012. We determined the proportion with guideline conform, non-conform or uncertain diagnosis in relation to age and year of diagnosis.

Results From 11/2019 - 3/2021, 3,167 participants registered and 2.281 (72 %) completed questionnaires. Complete doctors´ forms were available for 551 patients: 75 % females, mean age 35.3 (2.3-88.9) years; age at diagnosis 28.1 (1.0-89.2); year of diagnosis 2012 (1965-2020). In G4, 52/188 (27.7 %) were diagnosed without biopsies. The rate of guideline conform diagnosis improved since 2012, but in both time-periods was higher in children than adults (Table). In 396 participants with reported TGA-IgA results, the percentage having ≥10xULN decreased with age at diagnosis from 72.6, 68.1, 58.8, 53.1, to 49.6 % at ages < 10, 10-20, 20-30, 30-40, ≥40 years, respectively.

Conclusion In spite of improvement, at least 30 % of adults and 16 % of children are not diagnosed according to CeD guidelines in Germany, indicating poor quality of care.

Tab. 1  

Diagnosed as adult/child	Adult (> 18 years)	Adult (> 18 years)	Child (<18 years)	Child (<18 years)
Year of diagnosis (group)	<2012 (G1)	> 2012 (G2)	<2012 (G3)	> 2012 (G4)
n	131	200	32	188
Mean age (range)	59.0 (27.4-84.0)	45.6 (19.1-88.9)	23.8 (11.1-67.7)	10.0 (2.3-23.2)
Age at diagnosis (range)	42.7 (19.2-68.2)	42.1 (18.2-89.2)	5.4 (1.3-14.0)	7.0 (1.0-17.5)
Year of diagnosis (range)	2003 (1978-2011)	2016 (2012-2020)	2001 (1965-2011)	2017 (2012-2020)
Diagnosis made according to CeD guidelines*
Conform	29.8 %	60 %	68.8 %	83.0 %
Unclear	22.9 %	10 %	12.5 %	0.5 %
Not conform	47.3 %	30 %	18.8 %	16.5 %

*G4 vs G2: p < 0.05, G3 vs G1: p < 0.05, G4 vs G3 p < 0.05, G2 vs G1 p < 0.05

Publication History

Article published online:
07 September 2021