Suzanne Simpson

Interest in medical therapy for celiac disease

Objectives: A gluten-free diet is the treatment for celiac disease, but pharmaceutical agents are being developed. The level of interest amongst patients in using a medication to treat celiac disease is unknown. This study examined the level of interest amongst patients in medication to treat celiac disease. Methods: A questionnaire was distributed to celiac disease patients and data were collected on demographics, presentation, and interest in medication. Three validated celiac disease-specific instruments were incorporated: Celiac Disease Associated Quality of Life, the Celiac Symptom Index, and the Celiac Dietary Adherence Test. Results: Responses were received from 365 individuals with biopsy-proven celiac disease. Respondents were 78% (n = 276) female, 48% (n = 170) over 50 years of age, and experienced a classical (diarrhea predominant) presentation in 44% (n = 154). Of the 339 individuals answering the question regarding use of a medication to treat celiac disease, 66% were interested. Interest was greatest in older individuals (71% >50 years of age versus 60% <50 years of age, p = 0.0415), men (78% men versus 62% women, p = 0.0083), frequent restaurant customers (76% versus 58%, p = 0.0006), those dissatisfied with their weight (73% versus 51%, p = 0.0003) and those concerned with the cost of a gluten-free diet (77% versus 64%, p = 0.0176). Length of time since diagnosis, education, presentation, and symptoms with gluten exposure did not demonstrate any effect. Interest in medication was associated with a worse quality of life (CD-QOL 69.4 versus 80.1, p < 0.0001). Conclusions: Most individuals with celiac disease are interested in using a medication. Interest was highest among men, older individuals, frequent restaurant customers, individuals dissatisfied with their weight or concerned with the cost of a gluten-free diet, and those with a worse quality of life.

Is Dietitian Use Associated with Celiac Disease Outcomes

A gluten-free diet (GFD) is the treatment for celiac disease (CD), but due to its complexity, dietitian referral is uniformly recommended. We surveyed patients with CD to determine if dietitian use is associated with quality of life, symptom severity, or GFD adherence. The survey utilized three validated CD-specific instruments: the CD quality of life (CD-QOL), CD symptom index (CSI) and CD adherence test (CDAT). Four hundred and thirteen patients with biopsy-proven CD were eligible for inclusion. The majority (77%) were female and mean BMI was 24.1. Over three-quarters of patients (326, 79%) had seen a dietitian, however, 161 (39%) had seen a dietitian only once. Age, sex, and education level were not associated with dietitian use; nor was BMI (24.6 vs. 24.0, p = 0.45). On multivariate analysis, adjusting for age gender, education, duration of disease, and body mass index, dietitian use was not associated with CD-QOL, CSI, or CDAT scores. Our survey did not show an association between dietitian use and symptom severity, adherence, or quality of life. Delay in diagnosis was associated with poorer outcomes. This is a preliminary study with several limitations, and further prospective analysis is needed to evaluate the benefits and cost-effectiveness of dietitian-referral in the care of celiac disease patients.

Nutrition Assessment in Celiac Disease

The gluten-free diet is currently the only treatment for celiac disease, and patients should be monitored closely by a dietitian who is knowledgeable regarding this diet. Evaluation by a dietitian includes a comprehensive assessment of dietary history, with an emphasis on caloric and micronutrient intake. Patient knowledge of the gluten-free diet is assessed and interpretation of food labels is taught. Identification of micronutrient deficiencies or comorbid gastrointestinal conditions may occur during a comprehensive dietary assessment. In patients with evidence of gluten exposure, a thorough evaluation for cross-contamination is performed.

Development and validation of a celiac disease quality of life instrument for North American children.

Objective: Given the social constraints imposed by a gluten-free diet, it can be hypothesized that children with celiac disease (CD) living in the United States have a reduced health-related quality of life (HRQOL); however, there is no validated CD-specific HRQOL instrument for children living in the United States. The goals of this study were to develop and validate a CD-specific HRQOL instrument for children 8 to 18 years of age with CD and to report HRQOL in these children using both generic- and disease-specific instruments. Methods: This was a prospective study using focus group methodology to develop a CD-specific HRQOL instrument that was then administered to children 8 to 18 years of age with CD living throughout the United States. Instrument validation methods included construct, convergent, and divergent validities. Results: Two instruments were developed: CD-specific pediatric HRQOL instrument (CDPQOL) 8 to 12 and CDPQOL 13 to 18. A total of 181 children with CD completed the CDPQOL as well as a comparator generic instrument. Exploratory factor analysis restructured the CDPQOL and reduced the total number of items. The CDPQOL showed a moderate agreement with the Psychosocial dimensions of the generic instrument confirming convergent validity and low-to-moderate agreement with the Physical Health Summary dimension of the generic instrument confirming divergent validity. Conclusions: The CDPQOL, consisting of 13 to 17 questions, is a validated instrument for the measurement of HRQOL in children 8 to 18 years of age with CD living in the United States.

Celiac Disease in Patients With Type 1 Diabetes Screening and Diagnostic Practices

Objective The purpose of this study was to investigate screening practices for celiac disease in patients with type 1 diabetes across North America. The research question investigated was whether diabetes centers screen for celiac disease in type 1 diabetes more frequently than other facilities. Research Design and Methods A survey with 27 questions on screening practices for celiac disease in patients with type 1 diabetes was designed by experts in celiac disease and diabetes. Surveys were sent by email to diabetes educators and dietitians throughout the United States and Canada between December 2010 and May 2011. Results There were 514 respondents from 484 endocrine clinics, diabetes clinics, private practices, community nutrition centers, and inpatient centers. Thirty-five percent of work locations screened for celiac disease, with endocrine clinics reporting screening at the highest frequency (80%). Tissue transglutaminase was the most common screening test used. The most frequently recommended treatment of confirmed celiac disease was a gluten-free diet. However, only 71% of respondents recommended biopsy in patients with positive serologies. Most respondents (55.3%) reported that the gluten-free diet resulted in symptom improvement in the majority of patients. Conclusions Staff at endocrine clinics were more likely to suggest screening for celiac disease in patients with type 1 diabetes. Both low screening frequency as well as inconsistency in management of positive celiac disease serological tests indicated an increase in education regarding celiac disease in patients with type 1 diabetes is required. In addition uniform guidelines should be developed.

Dietary Supplement Use in Patients With Celiac Disease in the United States.

Background: There has been increasing interest in the use of complementary and alternative medicine (CAM) in the general population. Little is known about CAM use in patients with celiac disease (CD). Goals: We aimed to determine the demographics and clinical characteristics of patients with biopsy-proven CD who use dietary supplements to treat their symptoms. Study: CD patients completed a questionnaire on demographics, types of dietary supplement use, attitudes toward CAM, and 3 validated scales: CD-related Quality Of Life (CD-QOL), the CD Symptoms Index (CSI), and the CD Adherence Test (CDAT). Results: Of 423 patients, 100 (23.6%) used dietary supplements to treat CD symptoms. The most frequently used supplement was probiotics (n=59). Supplement users had a higher CD-QOL score (75.06 vs. 71.43, P=0.04) but had more symptoms based on CSI (35.64 vs. 32.05, P=0.0032). On multivariable analysis, adjusting for age, sex, education, symptom improvement following a gluten-free diet, and where the survey was completed, patients presenting with classic symptoms (OR, 2.56; 95% CI, 1.01-6.44) or nonclassic symptoms (OR, 2.75; 95% CI, 1.04-7.24) were significantly more likely to use supplements than those with asymptomatic/screen-detected CD. Conclusions: Patients with biopsy-proven CD who have symptoms at diagnosis tend to use dietary supplements more than those that are screen detected. Those using supplements report persistent symptoms, but a higher quality of life. The contribution of the gluten-free diet and supplement use to quality of life in the symptomatic CD patient needs to be determined.

Nutrition in Celiac Disease

Nutrition assessment is a vital step in the nutrition care plan and medical management of someone with celiac disease (CD). The Academy of Nutrition and Dietetics recommends that all patients with CD receive medical nutrition therapy. The nutrition assessment includes a complete review of dietary intake, anthropometric measures, biochemical data, medical tests, and procedures. Based on relevant data, a nutrition diagnosis is made and a nutrition intervention occurs. In CD, the primary nutrition intervention is the education and implementation of a strict gluten-free diet, currently the only treatment for CD. The gluten-free diet requires complete elimination of the gluten protein found in wheat, barley, and rye. All foods containing these grains as ingredients or through contamination must be removed from the diet. Patients must be taught how to read food labels to identify sources of gluten. They also must be taught how to decrease the chance of cross-contamination with gluten-containing grain when food is being stored, prepared, and served. Patients may find the gluten-free diet challenging; as such, referral to a dietitian with expertise in CD is essential.