Elias ED, Silvester JA, Graff LA, Bernstein CN, Rigaux LN, Duerksen DR. Patient Perspectives on the Long-Term Management of Celiac Disease. Journal of Clinical Gastroenterology 2021; in press.
The aim of this study was to survey adults with celiac disease on the utility of specific aspects of follow-up and on information needs. Currently, the treatment for celiac disease is strict gluten avoidance. Although this places the onus on the patient for disease management, patient perspectives on celiac disease care have not been formally assessed. The Manitoba Celiac Disease Cohort prospectively enrolled adults newly diagnosed with celiac disease using serology and histology. At the 24-month study visits, participants rated the utility of aspects of CD care on a 5-point scale anchored by "not at all useful" and "very useful" and the helpfulness of information on celiac disease -related topics on a 6-point scale anchored by "not at all helpful" and "very helpful." The online survey was completed by 149 of 211 cohort members [median age 40 (interquartile range 30 to 56) y; 68% female]. Adherence to a gluten-free diet was good. Most participants (87%) responded that they should be seen regularly for medical follow-up of celiac disease, preferably every 6 (26%) or 12 months (48%). Blood tests were the most highly rated care component (rated scored ≥4/5 by 78% of respondents), followed by the opportunity to ask about vitamins and supplements (50%), symptom review (47%), and information on celiac disease research (44%). Diet review was not considered helpful.
Mudryj AN, Waugh AK, Slater JJ, Duerksen DR, Bernstein CN, Riediger ND. Dietary gluten avoidance in Canada: results from the cross-sectional 2015 Canadian Community Health Survey. CMAJ Open 2021; Apr 1;9(2):E317-E323.
A gluten-free diet is required for the management of some conditions, whereas some Canadians may follow a gluten-free diet for discretionary reasons. We sought to estimate the prevalence of Canadians who adhere to a gluten-free diet, identify factors associated with adherence to a gluten-free diet, and describe and compare the location of food preparation and consumption for those who follow a gluten-free diet, those who report no dietary avoidances and those reporting other dietary avoidances. We used cross-sectional data from the 2015 Canadian Community Health Survey - Nutrition (n = 20 487). Demographic variables included sex, age group, ethnicity, highest level of household education and income adequacy. The relations between respondent characteristics and report of a gluten-free diet were estimated using logistic regression. Respondents were further categorized as avoiding dietary gluten, other dietary avoidances and no dietary avoidances. An estimated 1.9% of Canadians follow a gluten-free diet. Women had 2 times higher odds (odds ratio [OR] 2.08, 95% confidence interval [CI] 1.32 to 3.27) of reporting a GFD than men. After adjustment for income adequacy, household education, sex, age group and ethnicity, residents of Ontario and Quebec had about half the odds (OR 0.52, 95% CI 0.31 to 0.87, and OR 0.55, 95% CI 0.32 to 0.94, respectively) of reporting a GFD compared with residents of Atlantic Canada. Canadians who followed a gluten-free diet consumed significantly fewer calories from foods prepared at restaurants than both Canadians who reported no dietary avoidances and those who reported dietary avoidances other than gluten. Canadians following a gluten-free diet reported that 2.0% (95% CI 1.1% to 2.9%) of their daily kilocalories were from foods prepared at restaurants, compared with 6.7% (95% CI 5.4% to 7.9%) for Canadians reporting 1 or more dietary avoidances other than gluten, and 6.4% (95% CI 6.0% to 6.9%) for those reporting no avoidances.
We concluded that the estimated 1.9% prevalence of dietary gluten avoidance likely includes individuals with celiac disease, wheat allergies and nonceliac gluten sensitivity, as well as individuals excluding gluten in the management of irritable bowel syndrome or for reasons related to dietary trends. Canadians eating gluten-free diets consume fewer daily calories from restaurant-prepared foods than other Canadians, which may have social implications.
Mudryj A, Waugh A, Slater J, Duerksen D, Bernstein CN, Riediger N. Nutritional implications of dietary gluten avoidance among Canadians: results from the 2015 Canadian Community Health Survey. British Journal of Nutrition 2021;126(5):738-746.
Adherence to a gluten-free diet is the only available treatment for gluten-related disorders, although a gluten-free diet may also be followed for discretionary reasons. The main objectives of the present study were to (1) describe and test for differences in key nutrient intakes among Canadians who follow a gluten-free diet compared with Canadians with no dietary exclusions and (2) describe additional dietary avoidances adhered to by Canadians who avoid gluten. We conducted a secondary analysis of the cross-sectional 2015 Canadian Community Health Survey-Nutrition Survey, which included a general health survey and 24-h dietary recall (n=20 487). Participants were categorised as those who avoid dietary gluten and those who reported no avoidances. Key nutrient intakes were assessed, as a percentage of Dietary Recommended Intakes, including fibre, B vitamins, vitamin D, calcium, iron, sodium and zinc, and compared between the two groups using t tests. Canadians who avoided gluten had significantly lower intakes of folate, vitamin B12, vitamin D, iron, sodium and calcium compared with those who did not avoid any food groups. However, Canadians who reported following a gluten-free diet were significantly more likely to use vitamin or mineral supplements in the past 30 d. More than 20 % of those who avoided gluten also avoided dairy products. Findings suggest that following a gluten-free diet places Canadians at risk for nutrient inadequacies, particularly folate, calcium, and vitamin D. Further research is required to further examine how multiple dietary avoidances among those who avoid gluten may contribute to dietary inadequacies.
Atsawarungruangkit A, Silvester JA, Weiten D, Green KL, Wilkey KE, Rigaux LN, Bernstein CN, Graff LA, Walker JR, Duerksen DR. Development of the Dietitian Integrated Evaluation Tool for Gluten-free Diets (DIET-GFD). Nutrition 2020; 78: 110819.
Celiac disease treatment involves a gluten-free diet (GFD). There is no standardized tool for dietitians to objectively grade GFD adherence. This study aimed to develop a standardized tool for dietitians to evaluate and communicate GFD adherence. Participants were recruited from the Manitoba Celiac Disease Cohort. Using a consensus process, an expert panel of gastroenterologists, dietitians, clinical health psychologists, and persons with celiac disease developed the Dietitian Integrated Evaluation Tool for Gluten-free Diets (DIET-GFD). Two dietitians performed duplicate assessments of 27 newly diagnosed participants who had been advised to follow a GFD. The global adherence scale was further revised after panel discussions of the cases where there was uncertainty or discordance on dietitian ratings. Subsequently, the scoring system was evaluated using duplicate assessments of an additional 37 participants with celiac disease. The DIET-GFD includes features related to frequency and quantity of gluten ingestion based on self-reporting and food frequency evaluation, shopping and dining habits, how and where food is prepared and consumed, eating behaviors, and label reading skills. The DIET-GFD global assessment is reported using a 10-point ordinal descriptive scale, ranging from 1 (takes few precautions and regularly eats gluten) to 10 (no gluten in kitchen and rarely eats food prepared outside the home). The kappa of DIET-GFD global assessment was 0.845, which indicates excellent agreement.
We concluded that the DIET-GFD is a useful tool for dietitians to evaluate GFD adherence. Further studies are needed to confirm that the score from the DIET-GFD is reliable across various settings.
Silvester JA, Comino I, Rigaux LN, Segura V, Green KH, Cebolla A, Weiten D, Dominguez R, Leffler DA, Leon F, Bernstein CN, Graff LA, Kelly CP, Sousa C, Duerksen DR. Exposure sources, amounts and time course of gluten ingestion and excretion in patients with celiac disease on a gluten-free diet. Alimentary, Pharmacology and Therapeutics 2020; 52(9):1469-1479.
A major deficit in understanding and improving treatment in celiac disease is the lack of empiric data on real world gluten exposure. To estimate gluten exposure on a gluten-free diet (GFD) using immunoassays for gluten immunogenic peptides (GIP) and to examine relationships among GIP detection, symptoms and suspected gluten exposures Adults with biopsy-confirmed celiac disease on a GFD for 24 months were recruited from a population-based inception cohort. Participants kept a diary and collected urine samples for 10 days and stools on days 4-10. 'Doggie bags' containing ¼ portions of foods consumed were saved during the first 7 days. Gluten in food, stool and urine was quantified using A1/G12 ELISA. 18 participants with celiac disease (12 female; age 21-70 years) and 3 participants on a gluten-containing diet enrolled and completed the study. 12 of 18 celiac disease participants had a median 2.1 mg gluten per exposure (range 0.2 to >80 mg). Most exposures were asymptomatic and unsuspected. There was high intra-individual variability in the interval between gluten ingestion and excretion. Participants were generally unable to identify the food.
We concluded gluten exposure on a GFD is common, intermittent, and usually silent. Excretion kinetics are highly variable among individuals. The amount of gluten varied widely, but was typically in the milligram range, which was 10-100 times less than consumed by those on an unrestricted diet. These findings suggest that a strict GFD is difficult to attain, and specific exposures are difficult to detect due to variable time course of excretion.