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 2nd 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
