Abstract

Background: The majority of celiac disease (CD) cases remain undiagnosed (tip of the iceberg phenomenon) due to a variety of reasons, such as silent disease or unspecific symptoms with overlap to other diseases and insufficient awareness in both patients as well as physicians. The total diagnostic delay can be subdivided into patient's (gap between beginning of symptoms and first medical consultation) and doctor's (gap between first medical consultation and definitive diagnosis of CD) delay. There is insufficient data on diagnostic delay and associated factors in CD. In addition, it remains to be clarified, whether its extent has an impact on the course of the disease. Methods: We performed a large systematic patient survey study among unselected CD patients in Switzerland. Results were analyzed in total as well as in among selected subgroup of patients by means of descriptive statistics with a special focus on diagnostic delay. Results: A total of 1673 patients (76.1% female; mean age 41.1 y, range 0-92y, mean age at diagnosis 31y, range 0-83y) were analyzed. We found a mean total diagnostic delay of 72.1 months (median 18, IQR 4-72), with an enormous range from 0 up to 780 months and roughly equal fractions of patient's and doctor's delay with 39.5 (median 3, IQR 0-24) and 39.6 (median 4, IQR 0-28) months, respectively. While the mean age of diagnosis was not different in female vs. male patients (30.8 vs. 31.1 y), both, total (76.1 vs. 56.4, p=0.026) and doctor's (43.5 vs. 25.1, p 2 years, with no difference per se in freedom from symptoms between men vs. women. Treatment of nutritional deficiencies states was significantly more frequent in the long vs. short delay patients (74 vs. 58.5%, p<0.001). Conclusions: There is a substantial diagnostic delay in CD, due to both patient's and doctor's delay. Diagnostic delay is significantly longer in patients with older age at diagnosis and in female patients. This increased diagnostic delay in women is due to doctor's but not patient's delay, indicative of an insufficient awareness in physicians for CD especially in women. In addition, an increased diagnostic delay above two years is associated with a lower chance of clinical remission 6 and 12 months after diagnosis.

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