The purpose of this study was to characterize the diagnostic process, frequency of associated disorders, family history, and impact of a gluten-free diet in individuals with celiac disease. All members of the Canadian Celiac Association (n=5240) were surveyed with a questionnaire. Respondents included 2681 adults with biopsy-proven celiac disease. The mean age was 56 years. Most common presenting symptoms included abdominal pain (83%), diarrhea (76%), and weight loss (69%). The mean delay in diagnosis was 11.7 years. Diagnoses made prior to celiac disease included anemia (40%), stress (31%), and irritable bowel syndrome (29%). Osteoporosis was common. Prior to diagnosis, 27% of respondents consulted three or more doctors about their symptoms. Delays in diagnosis of celiac disease remain a problem. Associated medical conditions occur frequently. More accurate food labeling is needed. Improved awareness of celiac disease and greater use of serological screening tests may result in earlier diagnosis and reduced risk of associated conditions.
Celiac disease may manifest with a variety of symptoms which can result in delays in diagnosis. Celiac disease is associated with a number of other medical conditions. The last national survey of members of the Canadian Celiac Association (CCA) was in 1989. Our objective was to determine the feasibility of surveying over 5,000 members of the CCA, in addition to obtaining more health related information about celiac disease.
The Professional Advisory Board of the CCA in collaboration with the University of Ottawa developed a comprehensive questionnaire on celiac disease. The questionnaire was pre-tested and then a pilot survey was conducted on members of the Ottawa Chapter of the CCA using a Modified Dillmans' Total Design method for mail surveys.
We had a 76% response to the first mailout of the questionnaire. The mean age of participants was 55.5 years and the mean age at diagnosis was 45 years. The majority of respondents presented with abdominal pain, diarrhea, fatigue or weight loss. Prior to diagnosis, 30% of respondents consulted four or more family doctors. Thirty seven percent of individuals were told they had either osteoporosis or osteopenia. Regarding the impact of the gluten-free diet (GFD), 45% of individuals reported that they found following a GFD was very or moderately difficult. The quality of life of individuals with celiac disease was comparable to the mean quality of life of Canadians.
On the basis of our results, we concluded that a nationwide survey is feasible and this is in progress. Important concerns included delays in the diagnosis of celiac disease and the awareness of associated medical conditions. Other issues include awareness of celiac disease by health professionals and the impact of the GFD on quality of life. These issues will be addressed further in the national survey.
We sought to characterize the clinical features at presentation as well as the associated disorders, family history, and evaluation of compliance with a gluten-free diet in children with celiac disease from across Canada.
All members (n = 5240) of the Canadian Celiac Association were surveyed with a questionnaire. Of the 2849 respondents with biopsy-confirmed celiac disease, 168 who were or = 2 pediatricians before confirmation of the diagnosis. Before the recognition of celiac disease, other diagnoses received by these children included anemia (15%), irritable bowel syndrome (11%), gastroesophageal reflux (8%), stress (8%), and peptic ulcer disease (4%). A serological test was performed to screen for celiac disease in 70% of those in this population. Eight percent had either type 1 diabetes mellitus or a first-degree relative with celiac disease. Almost all respondents (95%) reported strict adherence to a gluten-free diet, and 89% noted improved health. Reactions after accidental gluten ingestion developed in 54% of the children between 0.5 and 60 hours after ingestion with a median of 2.0 hours. Reactions included abdominal discomfort (87%), diarrhea (64%), bloating (57%), fatigue (37%), headache (24%), and constipation (8%), and most displayed > 1 symptom. Although most adjusted well to their disease and diet, 10% to 20% reported major disruptions in lifestyle. Twenty-three percent felt angry all or most of the time about following a gluten-free diet. Only 15% avoided traveling all or most of the time, and during travel, 83% brought gluten-free food with them all of the time. More than half of the families avoided restaurants all or most of the time. Twenty-eight percent of the respondents found it extremely difficult to locate stores with gluten-free foods, and 27% reported extreme difficulty in finding gluten-free foods or determining if foods were free of gluten. Sixty-three percent of the respondents felt that the information supplied by the Canadian Celiac Association was excellent. Gastroenterologists provided excellent information to 44%, dietitians to 36%, and the family physician to 11.5%. When asked to select 2 items that would improve their quality of life, better labeling of gluten-containing ingredients was selected by 63%, more gluten-free foods in the supermarket by 49%, gluten-free choices on restaurant menus by 49%, earlier diagnosis of celiac disease by 34%, and better dietary counseling by 7%.
In Canada, children with celiac disease present at all ages with a variety of symptoms and associated conditions. Delays in diagnosis are common. Most children are compliant with a gluten-free diet. A minority of these children experience difficulties in modifying their lifestyles, and gluten-free foods remain difficult to obtain.
Celiac disease can present with mild or nongastrointestinal symptoms, and may escape timely recognition. The treatment of celiac disease involves a gluten-free diet, which is complex and challenging.
To evaluate clinical features and symptom recovery on a gluten-free diet in a Canadian adult celiac population.
All adult members (n=10,693) of the two national celiac support organizations, the Canadian Celiac Association and Fondation québécoise de la maladie coeliaque, were surveyed using a questionnaire.
A total of 5912 individuals (=18 years of age) with biopsy-confirmed celiac disease and/or dermatitis herpetiformis completed the survey. The female to male ratio was 3:1, and mean (± SD) age at diagnosis was 45.2 ± 16.4 years. Mean time to diagnosis after onset of symptoms was 12.0 ± 14.4 years. Abdominal pain and bloating (84.9%), extreme weakness/tiredness (74.2%), diarrhea (71.7%) and anemia (67.8%) were the most commonly reported symptoms at the time of diagnosis. Many respondents continued to experience symptoms after being on a gluten-free diet for >5 years. Sex differences were reported in clinical features before diagnosis, recovery after being on gluten-free diet and perceived quality of life, with women experiencing more difficulties than men.
Delays in diagnosis of celiac disease in Canada remain unacceptably long despite wider availability of serological screening tests. Many patients report continuing symptoms despite adhering to a gluten-free diet for >5 years, with women experiencing more symptoms and a lower recovery rate than men. Awareness of celiac disease needs improvement, and follow-up with a physician and a dietitian is essential for all patients with celiac disease.
Cites: Am J Gastroenterol. 2007 Jul;102(7):1454-6017355413
The treatment of celiac disease is a strict adherence to a gluten-free diet for life. In the past, oats were considered to be toxic to individuals with celiac disease and were not allowed in a gluten-free diet. However, recent evidence suggests that oats that are pure and uncontaminated with other gluten-containing grains, if taken in limited quantities, are safe for most individuals with celiac disease. For adults, up to 70 g (1/2 to 3/4 cup) of oats per day and for children, up to 25 g (1/4 cup) per day are safe to consume. These oats and oat products must fulfill the standards for a gluten-free diet set by the Canadian Food Inspection Agency and Health Canada. The Canadian Celiac Association, in consultation with Health Canada, Agriculture & Agri-Food Canada and the Canadian Food Inspection Agency, has established requirements for growing, processing, and purity testing and labelling of pure oats. These strategies have led to the production of pure, uncontaminated oats for the first time in Canada. Oats and oat products that are safe for consumption by individuals with celiac disease and dermatitis herpetiformis are now commercially available in Canada.
To provide recommendations for the management of patients who inquire about the Health Canada-approved, self-administered home blood tests for celiac disease or who present with positive test results after using the self-testing kit
PubMed and the Cochrane Database of Systematic Reviews were searched from January 1985 to April 2008, using the subject headings diagnosis of celiac disease and management or treatment of celiac disease. Guidelines for serologic testing and confirmation of diagnosis of celiac disease by the American Gastroenterological Association and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition are used in this review. Level 1 evidence was used.
Although blood tests are helpful for screening purposes, the confirmatory test for celiac disease is a small intestinal biopsy.
Patients whose blood tests for celiac disease provide positive results should have endoscopic small intestinal biopsies to confirm the diagnosis before starting a gluten-free diet.