The Economic Iceberg of Celiac Disease: More Than the Cost of Gluten-Free Food.

Celiac disease (CeD) is a chronic autoimmune disorder of global relevance, with the potential for acute and long-term complications. However, the economic burden of CeD is rarely considered and largely thought of as limited to the cost of gluten-free food. Fortunately, recent research has shed light on the various societal costs of CeD across the health care continuum. This article summarizes the current evidence on the economic impacts of CeD, which suggest that the societal economic burden of CeD stretches beyond the cost of gluten-free food. This review provides ample evidence of larger but hidden costs related to excess health care use for complications and comorbidities, as well as reduced productivity. Although significant advances are expected in the management of CeD, their effect on the economic burden of CeD remain uncertain. The aim of this review was to inform stakeholders across society and contribute to improved policies to support patients with CeD.

Guidelines for best practices in monitoring established coeliac disease in adult patients.

Coeliac disease (CeD) is an immunological disease triggered by the consumption of gluten contained in food in individuals with a genetic predisposition. Diagnosis is based on the presence of small bowel mucosal atrophy and circulating autoantibodies (anti-type 2 transglutaminase antibodies). After diagnosis, patients follow a strict, life-long gluten-free diet. Although the criteria for diagnosis of this disease are well defined, the monitoring phase has been studied less and there is a lack of specific guidelines for this phase. To develop a set of clinical guidelines for CeD monitoring, we followed the Grading of Recommendations Assessment, Development and Evaluation methodology. Statements and recommendations with the level of evidence were developed and approved by the working group, which comprised gastroenterologists, pathologists, dieticians and biostatisticians. The proposed guidelines, endorsed by the North American and European coeliac disease scientific societies, make recommendations for best practices in monitoring patients with CeD based on the available evidence. The evidence level is low for many topics, suggesting that further research in specific aspects of CeD would be valuable. In conclusion, the present guidelines support clinicians in improving CeD treatment and follow-up and highlight novel issues that should be considered in future studies.

Maladaptive Food Attitudes and Behaviors in Individuals with Celiac Disease and Their Association with Quality of Life.

BACKGROUND: The only treatment for celiac disease (CeD) is strict lifelong adherence to a gluten-free diet (GFD). In some individuals the demands of a GFD may contribute to maladaptive eating attitudes and behaviors that impair quality of life (QOL). The Celiac Disease Food Attitudes and Behaviors (CD-FAB) is an easily administered and scored 11-item tool querying potentially maladaptive food attitudes and behaviors resulting from beliefs around gluten exposures and food safety. OBJECTIVES: To assess the usefulness of the CD-FAB in establishing the presence of maladaptive food attitudes and behaviors among adults with CeD and to explore the relationship between these attitudes and behaviors and other factors including QOL, anxiety, depression, CeD symptoms and personality traits. METHODS: The study is a cross-sectional pilot of 50 adults (mean age 29.6 years) with biopsy-proven CeD who followed a GFD for at least one year and had no self-reported eating disorder diagnosis. High scores on the CD-FAB tool suggest higher disordered eating attitudes and beliefs. RESULTS: Compared to lower scores (mean 20.2), higher (worse) CD-FAB scores (mean 54.5) were positively associated with recency of diagnosis, number of CeD-related gastrointestinal symptoms, and the personality trait of neuroticism. Higher CD-FAB scores were statistically and clinically significantly associated with diminished QOL (p < 0.001). The relationship with anxiety and depression was less clear but trended in the expected direction. CONCLUSION: The CD-FAB may be a useful tool for dietitians who wish to monitor maladaptive food attitudes and behaviors among their CeD patients, especially in the first-year post-diagnosis.

Diet quality, ultra-processed food consumption, and quality of life in a cross-sectional cohort of adults and teens with celiac disease.

BACKGROUND: Coeliac disease (CeD), a common autoimmune condition, requires strict adherence to a gluten-free diet (GFD). Adherence to the GFD has been associated with quality of life (QOL). However, there may be other diet-related concerns, such as overall diet patterns, including diet quality or ultra-processed food (UPF) consumption, possibly associated with QOL among people with CeD following a GFD that have not been examined. METHODS: Diet quality was determined based on 24-h diet recalls of a cross-sectional prospectively recruited sample of 80 participants (50 adults and 30 teens) with biopsy-confirmed CeD ('Study Sample') using the Healthy Eating Index and Alternate Mediterranean Diet score. The amount of UPF consumed was assessed using Nova, a food processing classification system. QOL was measured using Celiac Disease-Specific Quality of Life (CDQOL) and Celiac Disease Pediatric-Specific Quality of Life (CDPQOL). The Study Sample's diet patterns were compared with National Health and Nutrition Examination Survey (NHANES) groups (25 adults reporting prior CeD and GFD; 51 adults with new CeD and no GFD; 15,777 adults and 2296 teens without CeD). The relationship of the Study Sample's diet patterns with CDQOL/CDPQOL was assessed using analysis of covariance. RESULTS: The Study Sample's diet patterns were suboptimal but generally favourable compared with all NHANES groups. Compared to Study Adults with the highest tertile of UPF, those with the lowest tertile had significantly higher CDQOL (mean: 67.6 vs. 78.3, p < 0.001). Compared to Study Teens with the lowest tertile of AMED, those with the highest tertile had significantly higher CDPQOL (mean: 67.0 vs. 79.9, p < 0.01). CONCLUSIONS: Maintaining high diet quality and minimising UPF may be important for CeD-specific QOL among individuals with CeD maintaining a GFD.

Review article: Dietary management of coeliac disease.

As the gluten-free diet is currently the only treatment for coeliac disease and one that needs to applied in the long term, this review aims to explore the various issues confronting an individual and discuss the importance of ongoing dietary management. The process of dietary counselling has shifted from one that focuses on just foods to avoid to one that evaluates the multiple life factors (social, cultural, environmental, biological) that affect the individual's food choices and dietary behaviour. The nutritional quality of a gluten-free diet continues to affect vitamin, mineral and weight status of individuals with coeliac disease. There are many barriers to dietary adherence including increased cost and limited availability of gluten-free products, as well as the negative impact on an individual's social domain of quality of life. Therefore, assessment, education and counselling by a coeliac specialist dietitian should be the cornerstone of dietary management.

Impact of Celiac Disease on Dating.

BACKGROUND/AIMS: When seeking a romantic partner, individuals with celiac disease (CD) must navigate challenging social situations. We aimed to investigate dating-related behaviors in adults with CD. METHODS: A total of 11,884 affiliates of the Celiac Disease Center at Columbia University were invited to participate in an online survey. Adults (≥ 18 years) with biopsy-diagnosed CD were included. Among the 5,249 who opened the email, 538 fully completed the survey (10.2%). The survey included a CD-specific dating attitudes/behaviors questionnaire, a Social Anxiety Questionnaire (SAQ), a CD-specific quality of life instrument (CD-QOL), and a CD Food Attitudes and Behaviors scale (CD-FAB). RESULTS: Respondents were primarily female (86.8%) and the plurality (24.4%) was in the 23-35 year age range. 44.3% had dated with CD, and among them, 68.4% reported that CD had a major/moderate impact on their dating life. A major/moderate impact was more commonly reported among females (69.3%, p < 0.001), 23-35-year-olds (77.7%, p = 0.015), those with a household income < $50 K (81.7%, p = 0.019), and those with a lower CD-QOL score (50.5 vs. 73.4, p = 0.002). While on dates, 39.3% were uncomfortable explaining precautions to waiters, 28.2% engaged in riskier eating behaviors, and 7.5% intentionally consumed gluten. 39.0% of all participants were hesitant to kiss their partner because of CD; females more so than males (41.1% vs. 22.7%, p = 0.005). CONCLUSIONS: The majority of participants felt that CD had a major/moderate impact on their dating life. This impact may result in hesitation toward dating and kissing, decreased QOL, greater social anxiety, and less adaptive eating attitudes and behaviors. CD and the need to adhere to a gluten free diet have a major impact on dating and intimacy.

Factors Associated with Maladaptive Eating Behaviors, Social Anxiety, and Quality of Life in Adults with Celiac Disease.

A gluten-free diet (GFD), which is the only treatment for celiac disease (CeD), is challenging and associated with higher levels of anxiety, disordered eating, and lower quality of life (QOL). We examined various demographic and health factors associated with social anxiety, eating attitudes and behaviors, and QOL. Demographics and health characteristics, QOL, eating attitudes and behaviors, and social anxiety of adults with CeD were acquired using validated measures. The mean scores for QOL, SAQ, and CDFAB were compared across various demographic groups using the Z statistical test. The mean QOL score was 57.8, which is in the moderate range. The social anxiety mean scores were high: 78.82, with 9% meeting the clinical cutoff for social anxiety disorder. Those on a GFD for a short duration had significantly higher SAQ scores (worse anxiety), higher CDFAB scores (worse eating attitudes and behavior), and lower QOL scores. Those aged 23-35 years had lower QOL scores (p < 0.003) and higher SAQ scores (p < 0.003). Being single (p < 0.001) and female (p = 0.026) were associated with higher SAQ scores. These findings suggest that the development of targeted interventions to maximize QOL and healthy eating behaviors as well as to minimize anxiety is imperative for some adults with CeD.

Navigating celiac disease and the gluten-free diet in China.

BACKGROUND: Little is known about celiac disease (CeD) diagnosis and management in China. AIM: This pilot aimed to be the first study to describe, quantitatively and qualitatively, how individuals living in China navigate CeD and the gluten-free diet (GFD). METHODS: Participants were 13 adults and four parents of children with reported CeD, recruited from 11 mainland China cities via an online GFD support group. CeD-specific quality of life (CD-QOL and CD-PQOL) and diet adherence (CDAT) were assessed. In-depth interviews addressed experiences with CeD and the GFD. RESULTS: Six of 17 participants reported biopsy- or serology-confirmed CeD. The mean (SD) adult CDAT score was 15.2 (3.6), > 13 indicating inadequate GFD adherence. The mean adult CD-QOL score was 62.1 (24.1) out of 100, in the "medium" to "good" range. Results were similar in children. Major interview themes included: (1) a challenging journey to obtain diagnosis; (2) social and structural barriers to maintaining the GFD; and (3) reliance on self in management of CeD. CONCLUSION: Obtaining a diagnosis, maintaining a GFD, and living with CeD can be extremely challenging in mainland China. Results suggest an urgent need for CeD-specific education and Asian-adapted GFD guidance for both healthcare practitioners and patients.

Impact of a Child's Celiac Disease Diagnosis and Management on the Family.

BACKGROUND: Little attention has been paid to family-wide repercussions of a child's celiac disease diagnosis and concomitant gluten-free diet management. AIMS: We quantitatively and qualitatively describe positive and negative family-wide effects of a child's celiac disease diagnosis and disease management. METHODS: We interviewed 16 families with at least one child currently following a gluten-free diet, with a biopsy-confirmed celiac disease diagnosis ≥ 1 year prior. Mothers and fathers independently rated child's dietary adherence, concern about child's health status, burden in caring for child's dietary needs, and level of change in various aspects of life post- diagnosis. Children rated their own celiac-specific quality of life through a validated scale. Seventy-one in-depth semi-structured interviews were conducted with 16 children with celiac disease, 31 parents, and 24 siblings. RESULTS: Mothers and fathers rated the effects of their child's celiac disease differently, with mothers reporting more lifestyle changes and heavier burden. Negative and positive themes emerged from the interviews. Mothers felt the burden of managing a gluten-free diet. Fathers felt guilty for carrying a celiac disease-associated gene and both fathers and siblings regretted limited food choices at restaurants and home. The need to be a more creative cook was seen as a positive effect by mothers. Fathers appreciated new family traditions. Siblings felt they had developed empathy for others. A framework is proposed to illustrate these family-wide interactions. CONCLUSIONS: A child's celiac disease diagnosis and disease management affects the entire family. Our results will inform family-centered interventions that maximize quality of life for families.

Association Between Inflammatory Bowel Diseases and Celiac Disease: A Systematic Review and Meta-Analysis.

BACKGROUND & AIMS: There is controversy over the association between celiac disease (CeD) and inflammatory bowel diseases (IBD). We performed a systematic review and meta-analysis to assess evidence for an association between CeD and IBD. METHODS: We searched databases including MEDLINE, EMBASE, CENTRAL, Web of Science, CINAHL, DARE, and SIGLE through June 25, 2019 for studies assessing the risk of CeD in patients with IBD, and IBD in patients with CeD, compared with controls of any type. We used the Newcastle-Ottawa Scale to evaluate the risk of bias and GRADE to assess the certainty of the evidence. RESULTS: We identified 9791 studies and included 65 studies in our analysis. Moderate certainty evidence found an increased risk of CeD in patients with IBD vs controls (risk ratio [RR] 3.96; 95% confidence interval [CI] 2.23-7.02) and increased risk of IBD in patients with CeD vs controls (RR 9.88; 95% CI 4.03-24.21). There was low-certainty evidence for the risk of anti-Saccharomyces antibodies, a serologic marker of IBD, in patients with CeD vs controls (RR 6.22; 95% CI 2.44-15.84). There was low-certainty evidence for no difference in risk of HLA-DQ2 or DQ8 in patients with IBD vs controls (RR 1.04; 95% CI 0.42-2.56), and very low-certainty evidence for an increased risk of anti-tissue transglutaminase in patients with IBD vs controls (RR 1.52; 95% CI 0.52-4.40). Patients with IBD had a slight decrease in risk of anti-endomysial antibodies vs controls (RR 0.70; 95% CI 0.18-2.74), but these results are uncertain. CONCLUSIONS: In a systematic review and meta-analysis, we found an increased risk of IBD in patients with CeD and increased risk of CeD in patients with IBD, compared with other patient populations. High-quality prospective cohort studies are needed to assess the risk of CeD-specific and IBD-specific biomarkers in patients with IBD and CeD.

A Cooking-Based Intervention Promotes Gluten-Free Diet Adherence and Quality of Life for Adults with Celiac Disease.

Current treatment for celiac disease (CD) requires a life-long gluten-free diet (GFD).1 Among the top challenges are eating outside the home2 and over-reliance on processed foods, which are often high-fat, low-fiber, and high-sugar.3 Home cooking is a GFD management strategy that addresses both. Research not specific to CD suggests a variety of positive outcomes related to home cooking: healthier dietary pattern, positive self-management behaviors (eg, improved glycosylated hemoglobin and cholesterol levels), increased willingness to integrate complex dietary changes, and improved quality of life (QOL).4-6 In this study we assessed the feasibility and acceptability of a cooking-based nutrition education intervention to promote GFD adherence and QOL among adults with CD.

Benefits From and Barriers to Portable Detection of Gluten, Based on a Randomized Pilot Trial of Patients With Celiac Disease.

Research links diminished quality of life (QOL) to the challenges of a strict gluten-free diet (GFD), the only treatment for celiac disease (CD).1-4 This pilot study assessed the acceptability and feasibility of a portable gluten sensor device (Nima) to promote GFD adherence and QOL.

Nutritional Considerations of the Gluten-Free Diet.

Celiac disease (CD) is an autoimmune-related disease causing inflammation in the small intestine triggered by the ingestion of gluten in the diet. The gluten-free diet (GFD) is the only treatment. Nutritional deficiencies of macronutrients and micronutrients are frequently found in untreated or newly diagnosed CD. A registered dietitian nutritionist is uniquely qualified to educate on the GFD and assess and support nutritional status at diagnosis and long term as well as helping patients with nonresponsive CD. Quality of life is important to address in individuals with CD because the GFD affects all aspects of life.

Persistent Economic Burden of the Gluten Free Diet.

Gluten free (GF) products have been reported to be more expensive and less available than their gluten containing counterparts. We examined the current U.S. cost and availability of GF products and made comparisons to the marketplace over a decade ago. Cost, determined by price per ounce and availability of a "market basket" of regular and GF products across four venues and five geographic regions was compared using a student's t test. GF products were more expensive (overall 183%), and in all regions and venues (p < 0.001). GF products from mass-market producers were 139% more expensive than the wheat-based version of the same product. Availability of GF products was greatest (66%) in the health food and upscale venues. In contrast to the results of the 2006 study, the cost of GF products has declined from 240% to 183% (adjusted for inflation). The introduction of mass-market production of GF products may have influenced the increase in availability and overall reduction of cost since 2006. The extent to which the cost of GF products impacts dietary adherence and quality of life for those on a GFD warrants exploration.

Correction to: Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease.

The original version of the article unfortunately contained formatting errors in Table 3. The correct version of Table 3 is given in the Correction article.

Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease.

BACKGROUND AND AIMS: Avoidance of gluten is critical for individuals with celiac disease (CD), but there is also concern that "extreme vigilance" to a strict gluten-free diet may increase symptoms such as anxiety and fatigue, and therefore, lower quality of life (QOL). We examined the associations of QOL with energy levels and adherence to, and knowledge about, a gluten-free diet. METHODS: This is a cross-sectional prospective study of 80 teenagers and adults, all with biopsy-confirmed CD, living in a major metropolitan area. QOL was assessed with CD-specific measures. Dietary vigilance was based on 24-h recalls and an interview. Knowledge was based on a food label quiz. Open-ended questions described facilitators and barriers to maintaining a gluten-free diet. RESULTS: The extremely vigilant adults in our sample had significantly lower QOL scores than their less vigilant counterparts [(mean (SD): 64.2 (16.0) vs 77.2 (12.2), p = 0.004]. Extreme vigilance was also associated with greater knowledge [5.7 (0.7) vs 5.1 (0.8), p = 0.035]. Adults with lower energy levels had significantly lower overall QOL scores than adults with higher energy levels [68.0 (13.6) vs 78.9 (13.0), p = 0.006]. Patterns were similar for teenagers. Cooking at home and using internet sites and apps were prevalent strategies used by the hypervigilant to maintain a strict gluten-free diet. Eating out was particularly problematic. CONCLUSION: There are potential negative consequences of hypervigilance to a strict gluten-free diet. Clinicians must consider the importance of concurrently promoting both dietary adherence and social and emotional well-being for individuals with CD.

Self-reported dietary adherence, disease-specific symptoms, and quality of life are associated with healthcare provider follow-up in celiac disease.

BACKGROUND: The only treatment for celiac disease (CeD) is a lifelong gluten-free diet (GFD). The restrictive nature of the GFD makes adherence a challenge. As an integral part of CeD management, multiple professional organizations recommend regular follow-up with a healthcare provider (HCP). Many CeD patients also participate in patient advocacy groups (PAGs) for education and support. Previous work found that follow-up of CeD patients is highly variable. Here we investigated the self-reported factors associated with HCP follow-up among individuals diagnosed with CeD who participate in a PAG. METHODS: We conducted a survey of members of Beyond Celiac (a PAG), collecting responses from 1832 U.S. adults ages 19-65 who reported having CeD. The survey queried HCP follow-up related to CeD and included validated instruments for dietary adherence (CDAT), disease-specific symptoms (CSI), and quality of life (CD-QOL). RESULTS: Overall, 27% of respondents diagnosed with CeD at least five years ago reported that they had not visited an HCP about CeD in the last five years. The most frequent reason for not visiting an HCP was "doing fine on my own" (47.6%). Using multiple logistic regression, we identified significant associations between whether a respondent reported visiting an HCP about CeD in the last five years and the scores for all three validated instruments. In particular, as disease-specific symptoms and quality of life worsened, the probability of having visited an HCP increased. Conversely, as dietary adherence worsened, the probability decreased. CONCLUSIONS: Our results suggest that many individuals with CeD manage their disease without ongoing support from an HCP. Our results thus emphasize the need for greater access to high quality CeD care, and highlight an opportunity for PAGs to bring together patients and HCPs to improve management of CeD.

Body mass index in celiac disease: beneficial effect of a gluten-free diet.

BACKGROUND: There is concern about celiac disease patients being overweight and gaining more weight while on a gluten-free diet (GFD). AIM: To investigate body mass index (BMI) and effect of GFD on BMI of celiac disease patients in the United States where obesity is a systematic problem. METHODS: BMI at diagnosis and after 2.8 years (mean) on a GFD were compared with national data. RESULTS: Among our patients (n=369, 67.2% female), 17.3% were underweight, 60.7% normal, 15.2% overweight, and 6.8% obese. All patients were followed by a dietitian. Compared with national data, females had lower BMI (21.9 vs. 24.2, P<0.0001) and fewer were overweight (11% vs. 21%, P<0.0001); more males had a normal BMI (59.5% vs. 34%, P<0.0001) and fewer were underweight (9.1% vs. 26.7%, P<0.0001). Factors associated with low BMI were female sex, Marsh IIIb/c histology, and presentation with diarrhea. On GFD, 66% of those who were underweight gained weight, whereas 54% of overweight and 47% of obese patients lost weight. CONCLUSIONS: A GFD had a beneficial impact on BMI, underweight patients gained weight and overweight/obese patients lost weight. The improvement in BMI adds to the impetus to diagnose celiac disease. Expert dietary counseling may be a major factor in the beneficial effects we noted.

An association between microscopic colitis and celiac disease.

BACKGROUND & AIMS: Microscopic colitis has been associated with celiac disease. We aimed to determine the extent and significance of this relationship. METHODS: A prospectively maintained database of celiac disease patients, seen between 1981 and 2006, was analyzed. Standardized morbidity ratios (SMR) were calculated using a general population study of microscopic colitis as the reference group. Statistical analysis was conducted using the Student t test, Pearson chi(2) test, or Fisher exact test. RESULTS: Microscopic colitis was found in 44 of 1009 patients (4.3%); this represented a 70-fold increased risk for individuals with celiac disease to have microscopic colitis, compared with the general population (SMR, 72.39; 95% confidence interval [CI], 52.52-95.36). The celiac disease patients with microscopic colitis were older (P = .0001) and had more severe villous atrophy (P = .002) than the celiac disease patients without microscopic colitis. Microscopic colitis was diagnosed after celiac disease in 64% of the patients, simultaneously in 25%, and before celiac disease in 11% (P = .0001). Pancolitis predominated, though 16% had colitis limited to the right colon. Steroid or immunosuppressant therapies were required in 66% of the celiac disease patients with microscopic colitis and given as maintenance therapy to 50% of these patients. Follow-up biopsies revealed that the colitis persisted in 57% of the patients with celiac disease and microscopic colitis, despite improved diarrhea symptoms; the diarrhea resolved in most of the patients. CONCLUSIONS: Microscopic colitis is more common in patients with celiac disease than in the general population. Patients with celiac disease and microscopic colitis have more severe villous atrophy and frequently require steroids or immunosuppressant therapies to control diarrhea.