My interest in celiac disease (gluten sensitive enteropathy) is both personal and professional. The personal interest developed when a couple of individuals very dear to me were diagnosed with this disease. Professionally, I have been involved with children with celiac disease and their families as a practicing pediatric gastroenterologist for the last several years. More recently, as a member of the national Professional Advisory Board of the Canadian Celiac Association (CCA) and Medical Advisor to the Halifax chapter of CCA, I have had a chance to collaborate with health professionals with expertise in this area and to interact with individuals and families with this disorder.
Of all the gastrointestinal disorders that I have encountered in my practice, none has been as fascinating as celiac disease. Celiac disease is a real “clinical chameleon”. It can be typical, atypical, silent or latent. Its clinical pattern has changed, and atypical presentations are now becoming more typical. One often finds celiac disease in patients in whom it is least expected. Those classical images of severely malnourished and wasted children with celiac disease seen in many textbooks are now history.
Our understanding of celiac disease has greatly improved over the last decade. The recent availability of serological tests has opened new avenues of screening high-risk individuals who are minimally symptomatic or asymptomatic. There has been an explosion of new diagnoses. However, before ending up at a gastroenterology clinic, many individuals still shuttle between a variety of physicians including family doctors, internists, hematologists, rheumatologists, neurologists and surgeons. This is not only because the disease can present in unusual ways but also due to a lack of awareness amongst health professionals.
A few years ago, an announcement was placed in the quarterly newsletter of the Halifax chapter of CCA inviting its members to send me a brief description of how they were diagnosed with celiac disease or dermatitis herpetiformis. The information was requested anonymously with only age and gender to be specified. My objective was to learn about the various presentations of these disorders from people with personal experience. Several responses were received, both from within and outside the province. Each respondent had a unique and fascinating story to tell about his or her road to diagnosis. In most cases the road had been long and treacherous. I thought that these case histories could serve as an interesting educational tool to help increase awareness of celiac disease amongst physicians. All stories were worthy of being published, but due to space limitation only a few could be included in this book. However, they represent the wide spectrum of clinical features of celiac disease.
The information is presented without identifying the contributors. In some cases, dates and places have been deleted to maintain anonymity. I have provided titles to the stories and to preserve the flavor of the narrations, I have not altered or revised the text. Other than a few grammatical adjustments and clarification of some acronyms, the stories are presented in their entirety. At the end of each narration, I have added a few clinical tips and “take-home” messages.
I am very grateful to my peers Dr. Connie Switzer and Dr. Peter Green for reviewing the book and giving their valuable suggestions and comments. I also wish to thank my administrative assistant, Dorothy Williamson for her help in transcribing and organizing this material.
This book will be made available to various health care professionals. I hope they will find it both interesting and educational. I welcome any feedback. The stories should not be taken as a criticism of the health profession; they simply illustrate the widespread lack of awareness of this disorder. My ultimate goal is to improve the awareness of celiac disease and prevent delays in diagnosis. Increasing awareness is so important for this disorder that may affect up to one percent of the world population!!
Dr. Mohsin Rashid MBBS, MEd, FRCP(C)
Dalhousie University, IWK Health Center
Halifax, Nova Scotia, Canada
