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.

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. 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). 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. 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.

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.