Long Delay before Celiac Disease Is Recognized

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To the Editor:
We read with great interest the work of W. Dickey and J. B. McConnell: How Many Hospital Visits Does it Take before Celiac Sprue Is Diagnosed? (J Clin Gastroenterol 1996;230:21-3). They note that it takes many hospital stays to correctly diagnose celiac sprue. This tallies with a recently published study from our group of 408 patients with celiac disease in whom the biopsy-proved diagnosis was made after they were 15 years old (1). All these patients had responded to a questionnaire we sent out in the German celiac association's periodical, Verbandzeitschrift der Deutschen Zöliakie-Gesellschaft (May 1994).
The median diagnostic interval for all patients was 5.4 years, and the 10.1 ± 12.3 years (±SD) minimum and maximum values differed considerably from 0.1 to 65 years. There were no differences between male and female patients by the Wilcoxon rank sum test.
To determine whether celiac disease has been diagnosed more quickly in recent years, patients were divided into groups according to the year in which the diagnosis was made. The total diagnostic intervals shortened considerably although not significantly (by Spearman's rank correlation test), but even in the last 2 years of evaluation, 1993 and 1994, it took 4.4 years (median) and 9.0 ± 11.1 years (±SD) before the diagnosis was made (Table 1). There were no differences between female and male patients.
In addition, interval 1 (onset of symptoms until the first visit to a physician) shortened, but again, this was not significant (by Spearman's rank correlation test). Again there were no differences between female and male patients. Only interval 2 (first visit to the physician until diagnosis) shortened significantly (p = 0.03; Table 2). However, even during the last 2 years of evaluation, it took 2 years (median) and 6.9 ± 9.8 years (±SD) before the diagnosis was made (Table 2). There were no differences between female and male patients. At all times, interval 2 was longer than interval 1 (p < 0.001).
Nineteen (5.8%) of the 328 female patients and one (1.3%) of the 80 male patients with celiac disease had at least one relative with a celiac disease. The total diagnostic interval did not differ significantly (by the Wilcoxon rank sum test) in these patients from the remaining 388 patients.
Although the total diagnostic interval in celiac disease has decreased more recently, it still remains unacceptably high (in 1993 and 1994). Patients with symptoms eventually diagnosed as celiac disease visited their physicians more quickly. This is probably not disease specific, but rather the result of a general development that patients no longer think twice about a first visit to the physician. The disappointing fact, however, is that it even now takes significantly more time for the physician to diagnose celiac disease than for the patients to schedule an appointment. The reasons for this may be:
We do not know which of these possibilities is the main reason for the long interval between the first visit to the physician to the diagnosis. Nonetheless, it seems necessary to raise public awareness about gastrointestinal symptoms and the possible diagnosis of celiac disease and especially to increase postgraduate study for physicians about the signs and symptoms of celiac disease.

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