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

Digestive Diseases and Sciences volume 63, pages1438–1448(2018)Cite this article

A Correction to this article is available

This article has been updated

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.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

US$ 39.95

Tax calculation will be finalised during checkout.

Change history

  • 11 April 2018

    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.

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

References

  1. 1.

    Green PHR, Krishnareddy S, Lebwohl B. Clinical manifestations of celiac disease. Dig Dis. 2015;33:137–140.

    Article  PubMed  Google Scholar 

  2. 2.

    Abu Daya H, Lebwohl B, Lewis SK, et al. Celiac disease patients presenting with anemia have more severe disease than those presenting with diarrhea. Clin Gastroenterol Hepatol. 2013;11:1472–1477.

    Article  PubMed  Google Scholar 

  3. 3.

    Rubio-Tapia A, Kyle RA, Kaplan EL, et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. 2009;137:88–93.

    Article  PubMed  PubMed Central  Google Scholar 

  4. 4.

    Rubio-Tapia A, Ludvigsson JF, Brantner TL, et al. The prevalence of celiac disease in the United States. Am J Gastroenterol. 2012;107:1538–1544.

    Article  PubMed  Google Scholar 

  5. 5.

    Lohi S, Mustalahti K, Kaukinen K, et al. Increasing prevalence of coeliac disease over time. Aliment Pharmacol Ther. 2007;26:1217–1225.

    Article  PubMed  CAS  Google Scholar 

  6. 6.

    Rubio-Tapia A, Hill ID, Kelly CP, et al. American College of Gastroenterology. ACG guidelines: diagnosis and management of celiac disease. Am J Gastroenterol. 2013;108:656–676.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  7. 7.

    Ludvigsson JF, Bai JC, Biagi F, et al. BSG Coeliac Disease Guidelines Development Group; British Society of Gastroenterology. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014;64:1210–1228.

    Article  Google Scholar 

  8. 8.

    Hornell A. Effects of a gluten-free diet on gastrointestinal symptoms in celiac disease. Am J Clin Nutr. 2007;85:160–166.

    Article  Google Scholar 

  9. 9.

    Fabiani E, Catassi C. International Working Group. The serum IgA class anti-tissue transglutaminase antibodies in the diagnosis and follow-up of coeliac disease: results of an international multi-center study. International Working Group on Eu-tTG. Eur J Gastroenterol Hepatol. 2001;13:659–665.

    Article  PubMed  CAS  Google Scholar 

  10. 10.

    Catassi C, Fabiani E, Iacono G, et al. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Am J Clin Nutr. 2007;85:160–166.

    Article  PubMed  CAS  Google Scholar 

  11. 11.

    Lebwohl B, Granath F, Ekbom A, et al. Mucosal healing and risk for lymphoproliferative malignancy in celiac disease: a population-based cohort study. Ann Intern Med. 2013;159:169–175.

    Article  PubMed  PubMed Central  Google Scholar 

  12. 12.

    Meyer D, Stavropolous S, Diamond B, et al. Osteoporosis in a North American adult population with celiac disease. Am J Gastroenterol. 2001;96:112–119.

    PubMed  CAS  Google Scholar 

  13. 13.

    Lee AR, Diamond B, Ng D, et al. Quality of life of individuals with celiac disease: survey results from the United States. J Hum Nutr Diet. 2012;25:233–238.

    Article  PubMed  CAS  Google Scholar 

  14. 14.

    Ciacci C, D’Agate C, DeRosa A, et al. Self-rated quality of life in celiac disease. Dig Dis Sci. 2003;48:2216–2220.

    Article  PubMed  CAS  Google Scholar 

  15. 15.

    Zarkadas M, Dubois S, Maclsaac K, et al. Living with coeliac disease and a gluten-free diet: a Canadian perspective. J Hum Nutr Diet. 2013;26:10–23.

    Article  PubMed  CAS  Google Scholar 

  16. 16.

    Shah S, Akbari M, Vanga R, et al. Patient perception of treatment burden is high in celiac disease compared with other common conditions. Am J Gastroenterol. 2014;109:1304–1311.

    Article  PubMed  PubMed Central  Google Scholar 

  17. 17.

    Zignone F, Swift GL, Card TR, et al. Psychological morbidity of celiac disease: a review of the literature. United Eur Gastroenterol J. 2014;3:136–145.

    Google Scholar 

  18. 18.

    Casellas F, Rodrigo L, Lucendo AJ, et al. Benefit of health-related quality of life of adherence to gluten-free diet in adult patients with celiac disease. Rev Esp Enferm Dig. 2015;107:196–201.

    PubMed  Google Scholar 

  19. 19.

    Usai P, Minerba L, Marini B, et al. Case control study on health-related quality of life in adult coeliac disease. Dig Liver Dis. 2002;34:547–552.

    Article  PubMed  CAS  Google Scholar 

  20. 20.

    Hauser W, Stallmach A, Caspary WF, et al. Predictors of reduced health-related quality of life in adults with coeliac disease. Aliment Pharmacol Ther. 2007;25:569–578.

    Article  PubMed  CAS  Google Scholar 

  21. 21.

    Nachman F, Planzer del Campo M, Gonzalez A, et al. Long-term deterioration of quality of life in adult patients with celiac disease is associated with treatment noncompliance. Dig Liver Dis. 2010;42:685–691.

    Article  PubMed  Google Scholar 

  22. 22.

    White LE, Bannerman E, Gillett PM. Coeliac disease and the gluten free diet: a review of the burdens; factors associated with adherence and impact on health-related quality of life, with specific focus on adolescence. J Hum Nutr Diet. 2016;29:593–606.

    Article  PubMed  CAS  Google Scholar 

  23. 23.

    Dorn SD, Hernandez L, Minayas MT, et al. The development and validation of a new coeliac disease quality of life survey (CD-QOL). Aliment Pharmacol Ther. 2009;31:666–675.

    Article  PubMed  Google Scholar 

  24. 24.

    Jordan NE, Li Y, Magrini D, et al. Development and validation of a celiac disease quality of life instrument for North American children. J Pediatr Gastroenterol Nutr. 2013;57:477–486.

    Article  PubMed  Google Scholar 

  25. 25.

    Leffler DA, Dennis M, Edwards JB, et al. A simple validated gluten-free diet adherence survey for adults with celiac disease. Clin Gastroenterol Hepatol. 2009;7:530–536.

    Article  PubMed  Google Scholar 

  26. 26.

    Braun V, Clarke V. What can “thematic analysis” offer health and wellbeing researchers? Int J Qual Stud Health Well-being. 2014;9:26152.

    Article  PubMed  Google Scholar 

  27. 27.

    Barratt SM, Leeds JS, Sanders DS. Quality of life in coeliac disease is determined by perceived degree of difficulty adhering to a gluten-free diet, not the level of dietary adherence ultimately achieved. J Gastrointest Liver Dis. 2011;20:241–245.

    Google Scholar 

  28. 28.

    Hopman EGD, Koopman HM, Maarten Wit J, et al. Dietary compliance and health-related quality of life in patients with coeliac disease. Eur J Gastroenterol Hepatol. 2009;21:1056–1061.

    Article  PubMed  Google Scholar 

  29. 29.

    Half of Americans Think Gluten-Free Diets are Fad While 25% Eat Gluten-Free Foods. Minten Group, Ltd. http://www.mintel.com/press-centre/food-and-drink/half-of-americans-think-gluten-free-diets-are-a-fad-while-25-eat-gluten-free-foods. Accessed July 25, 2017.

  30. 30.

    McNally SL, Donohue MC, Newton KP, et al. Can consumers trust web-based information about celiac disease? Accuracy, comprehensiveness, transparency, and readability of information on the internet. Interact J Med Res. 2012;1:e1. https://doi.org/10.2196/ijmr.2010.

    Article  PubMed  PubMed Central  Google Scholar 

  31. 31.

    NIH Consensus Development Conference on Celiac Disease. https://consensus.nih.gov/2004/2004celiacdisease118html.htm. Accessed July 28, 2017.

  32. 32.

    Addolorato G, DeLorenzi G, Abenavoli L, et al. Psychological support counselling improves gluten-free diet compliance in coeliac patients with affective disorders. Aliment Pharmacol Ther. 2004;20:777–782.

    Article  PubMed  CAS  Google Scholar 

  33. 33.

    Meyer KG, Fasshauer M, Nebel IT, et al. Comparative analysis of conventional training and a computer-based interactive training program for celiac disease patients. Patient Educ Couns. 2014;54:353–360.

    Article  Google Scholar 

  34. 34.

    Ring Jacobsson L, Friedrichsen M, Al G, et al. Does a coeliac school increase psychological well-being in women suffering from coeliac disease, living on a gluten-free diet? J Clin Nurs. 2012;21:766–775.

    Article  PubMed  Google Scholar 

  35. 35.

    Sainbury K, Mullan B, Sharpe L. A randomized controlled trial of an online intervention to improve gluten-free diet adherence in celiac disease. Am J Gastroenterol. 2013;108:811–817.

    Article  CAS  Google Scholar 

  36. 36.

    Haas K, Martin A, Park KT. Text message intervention (TEACH) improves quality of life and patient activation in celiac disease: a randomized clinical trial. J Pediatr. 2017;. https://doi.org/10.1016/j.jpeds.2017.02.062.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

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.

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.

Author information

Affiliations

  1. Department of Health and Behavior Studies, Program in Nutrition, Teachers College, Columbia University, 525 West 120th Street, Box 137, New York, NY, 10027, USA

    Randi L. Wolf, Patricia Zybert, Jennifer Cadenhead & Chelsea Amengual

  2. Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavilion, 180 Fort Washington Avenue, New York, NY, 10032, USA

    Benjamin Lebwohl, Anne R. Lee, Norelle R. Reilly & Peter H. R. Green

Authors
  1. Randi L. Wolf
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Benjamin Lebwohl
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Anne R. Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Patricia Zybert
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Norelle R. Reilly
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Jennifer Cadenhead
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Chelsea Amengual
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Peter H. R. Green
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

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.

Corresponding author

Correspondence to Randi L. Wolf.

Ethics declarations

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.

Additional information

The ​original ​version ​of ​this ​article ​was ​revised: The formatting errors in Table 3 were corrected.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Wolf, R.L., Lebwohl, B., Lee, A.R. et al. Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease. Dig Dis Sci 63, 1438–1448 (2018). https://doi.org/10.1007/s10620-018-4936-4

Download citation

Keywords

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