How many hospital visits does it take before celiac sprue is diagnosed?

We studied the hospital records of patients with celiac sprue in order to determine how frequently hospital specialists failed to make the diagnosis. Over a 7 1/2-year period, 39 patients were diagnosed, 49% within the last is months of the study period. Fourteen patients (39%) had been referred to the hospital a total of 30 times with features suggestive of celiac sprue, yet without being successfully diagnosed: the delay between initial referral and diagnosis was >6 years in nine of these patients. The diagnosis was made by gastroenterologists or other internists in 38 (97%) patients. Gastroenterologists had an 85% (33 of 39) diagnostic success rate, other internists 63% (five of eight), and surgeons 7% (one of 14). None of eight referrals to other specialists led to diagnosis. While a history of diarrhea was more likely to lead to diagnosis, it was reported by only 59% (23 of 39) of patients at the time of diagnosis and at only 46% (32 of 69) of referrals; furthermore, it did not prompt correct diagnosis in 28% (nine of 32). Anemia was the sole manifestation of celiac sprue at 17 referrals, and correct diagnosis was made in only seven (41%), all by gastroenterologists. The perceived rarity of celiac sprue reflects its underdiagnosis. Diagnosis is still delayed even in patients with classic diarrhea, and there is still a failure to appreciate the possible manifestations of sprue, including anemia without gastrointestinal symptoms. Because patients may be referred to specialists other than gastroenterologists with symptoms arising from celiac sprue, a wider knowledge of its manifestations is called for.