Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease
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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.
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.
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.
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.
KeywordsCeliac disease Quality of life Adherence Gluten-free diet Teenagers Adults
Celiac disease adherence test
Degrees of freedom
New York City
Quality of life
Registered dietitian nutritionist
Standardized dietitian evaluation
Supported by the Provost Investment Fund at Teachers College Columbia University and in part by Columbia University’s CTSA Grant No. UL1 TR000040 from NCATS/NIH.
RW, BL, AL, NR, and PG conceptualized and designed the study. JC and CA collected data and contributed to conceptualization of the qualitative analyses. PZ managed and analyzed the data. All authors (RW, BL, AL, PZ, NR, JC, CA, PG) reviewed and commented on multiple drafts of the manuscript, and all played a key role in the interpretation of study results.
Compliance with ethical standards
Conflicts of interest
RW, BL, AL, PZ, NR, JC, CA declare that they have no conflicts of interest. PG serves on the Advisory board of ImmusanT, Cellimmune and ImmunogenX.
All procedures performed in this study involving human participants were in accordance with ethical standards of the institutional review boards at both Columbia University Medical Center and Teachers College, Columbia University and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Written informed consent was obtained from all individual participants included in the study.
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