Sir William Osler once said: “Listen to the patient…he is telling you the diagnosis.” The validity of his statement could not be confirmed more dramatically than by reading the first-person narratives of patients whose long experience with celiac disease has been compiled by Dr. Rashid in this valuable little book. Their stories illustrate, far better than could be done in a medical textbook, the remarkable spectrum of clinical presentations of celiac disease. Even more instructive is the documentation of the intolerably long delays that too often occur between the onset of symptoms and establishment of the definitive diagnosis and the institution of effective treatment.
Our understanding of celiac disease continues to expand at high speed, with new contributions to our understanding of the disorder appearing almost weekly in the medical scientific literature. The development and progressive refinement of serological and genetic testing is already leading to identification of patients with previously unsuspected disease, and of asymptomatic or minimally symptomatic individuals, some of whom may develop more obvious clinical disease at some later date. It is even within the realm of possibility that, at some future date, such testing might even replace intestinal biopsy as the “gold standard” for diagnosis, at least in some individuals. Meanwhile, as with most medical research, even when research doesn’t give us all the answers, it always refines the questions.
But despite these remarkable advances in scientific knowledge, one fundamental fact remains unchanged. The diagnosis of celiac disease, as with most other conditions, is not made by laboratory or other tests. It is made by people…by doctors who listen carefully to what their patients are telling them. Those stories, as told by patients in their own words, remain far and away the most valuable diagnostic aids we have.
By letting people with celiac disease describe their long and often frustrating journeys toward a final diagnosis and definitive treatment, Dr. Rashid has done us all a valuable service.
Dr. Richard Goldbloom MD, FRCP(C), OC
Professor of Pediatrics
Chancellor, Dalhousie University
Halifax, Nova Scotia, Canada
