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Digestive Diseases and Sciences

, Volume 63, Issue 6, pp 1438–1448 | Cite as

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

  • Randi L. Wolf
  • Benjamin Lebwohl
  • Anne R. Lee
  • Patricia Zybert
  • Norelle R. Reilly
  • Jennifer Cadenhead
  • Chelsea Amengual
  • Peter H. R. Green
Original Article

Abstract

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.

Keywords

Celiac disease Quality of life Adherence Gluten-free diet Teenagers Adults 

Abbreviations

CD

Celiac disease

CDAT

Celiac disease adherence test

DF

Degrees of freedom

NJ

New Jersey

NY

New York

NYC

New York City

QOL

Quality of life

RDN

Registered dietitian nutritionist

SDE

Standardized dietitian evaluation

GF

Gluten free

Notes

Acknowledgments

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.

Author’s contribution

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.

Funding

This study was funded 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.

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.

Ethical approval

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.

Informed consent

Written informed consent was obtained from all individual participants included in the study.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018
Corrected ​publication April/2018

Authors and Affiliations

  1. 1.Department of Health and Behavior Studies, Program in Nutrition, Teachers CollegeColumbia UniversityNew YorkUSA
  2. 2.Department of Medicine, Celiac Disease CenterColumbia University Medical Center, Harkness PavilionNew YorkUSA

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