Patient Perspectives on the Long-term Management of Celiac Disease.

GOAL: The aim of this study was to survey adults with celiac disease (CD) on the utility of specific aspects of follow-up and on information needs. BACKGROUND: Currently, the treatment for CD is strict gluten avoidance. Although this places the onus on the patient for disease management, patient perspectives on CD care have not been formally assessed. STUDY: The Manitoba Celiac Disease Cohort prospectively enrolled adults newly diagnosed with CD 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 CD-related topics on a 6-point scale anchored by "not at all helpful" and "very helpful." RESULTS: 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 CD, 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 CD research (44%). Diet review was not considered helpful. CONCLUSIONS: Two years after diagnosis, most individuals with CD find regular specialist follow-up helpful, particularly for biochemical assessment of disease activity and its complications. Furthermore, information on research and long-term complications of CD is also valued.

Exposure sources, amounts and time course of gluten ingestion and excretion in patients with coeliac disease on a gluten-free diet.

BACKGROUND: A major deficit in understanding and improving treatment in coeliac disease (CD) is the lack of empiric data on real world gluten exposure. AIMS: 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 METHODS: Adults with biopsy-confirmed CD 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 » portions of foods consumed were saved during the first 7 days. Gluten in food, stool and urine was quantified using A1/G12 ELISA. RESULTS: Eighteen participants with CD (12 female; age 21-70 years) and three participants on a gluten-containing diet enrolled and completed the study. Twelve out of 18 CD 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. CONCLUSIONS: 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.

Development of the Dietitian Integrated Evaluation Tool for Gluten-free Diets (DIET-GFD).

OBJECTIVES: Celiac disease (CD) 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. METHODS: 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 CD 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 CD. Interrater agreement was assessed using square-weight Cohen's kappa. RESULTS: 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. CONCLUSIONS: 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.

Can individuals with celiac disease identify gluten-free foods correctly?

BACKGROUND & AIMS: Patients with celiac disease (CD) often report inadvertent gluten exposures and challenges reading labels. The most common cause of non-responsive CD is gluten exposure. We aimed to assess whether recently diagnosed CD patients can determine whether a food is gluten-free based on labeling, and to assess skills over time. A secondary aim was to identify factors associated with label reading proficiency. METHODS: Inception cohort with follow-up at 6, 12, and 24 months after diagnosis. Participants were asked to determine whether 25 food items were gluten-free based on labeling information. Diet adherence was assessed using the Celiac Diet Assessment Tool (CDAT) and the Gluten-Free Eating Assessment Tool (GF-EAT). 144 adults with newly diagnosed celiac disease were enrolled. The initial quiz at 6 months was completed by 83%. Quizzes were completed by 72% at 12 months and 70% at 24 months. RESULTS: Median overall accuracy scores were: 23/25, 24/25 and 21/25 at 6, 12 and 24 months respectively. Gluten-free products with explicit "gluten-free" claims had the fewest errors. Quiz scores were not correlated with tTG IgA levels, or CDAT or GF-EAT scores. Diet adherence was generally good (>85% with CDAT <13 suggesting adequate GFD adherence); however, at 24 months, only 11% reported no gluten exposure. CONCLUSIONS: CD patients may be unable to consistently choose gluten-free foods based on product labeling. Explicit identification of gluten-free products may be helpful. Label reading ability appears stable over time. Further studies are needed to evaluate whether erroneous label reading or misleading labels are associated with persistent villous atrophy.

Symptoms of Functional Intestinal Disorders Are Common in Patients with Celiac Disease Following Transition to a Gluten-Free Diet.

BACKGROUND: Celiac disease and functional intestinal disorders may overlap, yet the natural history of functional symptoms in patients with celiac disease is unknown. AIM: To investigate the prevalence of irritable bowel syndrome (IBS), functional dyspepsia (FD), and functional bloating (FB) symptoms among patients with celiac disease at diagnosis and during the first year of a gluten-free diet. METHODS: Adults with a new diagnosis of celiac disease were surveyed at baseline, 6 months and 1 year using standardized measures for intestinal symptoms [Rome III diagnostic questionnaire and celiac symptom index (CSI)] and gluten-free diet adherence [gluten-free eating assessment tool (GF-EAT) and celiac diet adherence test]. RESULTS: At diagnosis, two-thirds fulfilled Rome III diagnostic questionnaire symptom criteria for IBS (52%), functional dyspepsia (27%), and/or functional bloating (9%). One year post-diagnosis, there was high adherence to a gluten-free diet as 93% reported gluten exposure less than once per month on the GF-EAT and only 8% had ongoing celiac disease symptoms (CSI score >45). The rates of those meeting IBS (22%) and functional dyspepsia (8%) symptom criteria both decreased significantly on a gluten-free diet. The prevalence of functional symptoms (any of IBS, FD or FB) at 1 year was 47%. CONCLUSIONS: Long-term follow-up of patients with celiac disease is necessary because many patients with celiac disease who are adherent to a gluten-free diet have persistent gastrointestinal symptoms.