Aim: To explore the motivation for gluten avoidance in the absence of coeliac disease (CD) and ascertain what symptoms are triggered by gluten and what beliefs/reasons influence this decision.
Background: Links between physical/psychological symptoms and gluten in CD are well known but less is known about those who self-select a gluten-free diet (GFD) in the absence of CD.
Methods: An empirical study using responses to an anonymous on-line questionnaire. Closed questions were used as a screening tool to exclude participants who had CD, wheat allergy or were following a low FODMAP diet. Data from participants using a GFD in the absence of a medical diagnosis was then analysed using thematic analysis.
Results: 120 initial responses, 87 were completed in full. 23 respondents fulfilled the inclusion criteria for thematic analysis. 7 different themes emerged, including one for signs/symptoms. Other themes identified included difficulties of a GFD, health beliefs, feelings and influence on decision to follow a GFD. Responses indicate that the reasons for gluten avoidance are in the most part reasoned and logical and were based around participants’ self-management of symptoms.
Conclusion: Symptoms included those typical of irritable bowel syndrome (IBS), but also infertility, low mood/energy, immune function and weight management and visual and auditory hallucinations. It appears the majority of responses analysed thematically could fit into the spectrum of non-coeliac gluten sensitivity (NCGS). Findings also suggest more support at all levels of medical care may help patients establish if it is gluten, rather than wheat or FODMAPs particularly fructans that are contributing to signs/symptoms.
Keywords: Non-coeliac gluten sensitivity, Non-celiac wheat sensitivity, Gluten intolerance, Gluten-free, Coeliac disease, Self-management of symptoms.
(Please cite as: Harper L, Bold J. An exploration into the motivation for gluten avoidance in the absence of coeliac disease. Gastroenterol Hepatol Bed Bench 2018;11(3):259-268).
Terazano E. Healthy appetites drive jump in sales of gluten-free foods. Financial Times 2017; www.ft.com/content/4ec0f2f2-2c0a-11e7-9ec8-168383da43b7
Aziz I, Sanders DS. Emerging concepts: from coeliac disease to non-coelic gluten sensitivity. Proc Nutr Soc 2012;71:576-580.
West J, Fleming KM, Tata LJ, Card TR, Crooks CJ. Incidence and Prevalence of Celiac Disease and Dermatitis Herpetiformis in the UK Over Two Decades: Population-Based Study. Am J Gastroenterol 2014;109(5):757-68.
Levinovitz A. The Gluten Lie. 2015 Regan Arts, New York.
Kluger J. Eat More Gluten: The Diet Fad Must Die. Time Magazine 2014.
White M. Why We ‘re Wasting Billions on Gluten-Free Food. Time Magazine 2013.
Whitaker J, West J, Holmes G, Logan R. Patient perceptions of the burden of coeliac disease and its treatment in the UK. Aliment Pharmacol Ther 2009;29:1131-1136.
Leonard M, Vasagar B. US perspective on gluten-related disease. Clin Exp Gastroenterol 2014;7:25-37.
Horgan A, Sweeney J. Young students’ use of the Internet for mental health information and support. J Psychiatric Mental Health Nurs 2010;17(2):117-23.
Lis DM, Stellingwerff T, Shing CM, Ahuja K, Fell JW. Exploring the Popularity, Experiences, and Beliefs Surrounding Gluten-Free Diets in Nonceliac Athletes. Int J Sports Nutr Exerc Metab 2015;25(1):37-45.
Carroccio A, Mansueto P, Iacono G, Soresi M. Non-Celiac Wheat Sensitivity Diagnosed by Double-Blind Placebo-Controlled Challenge: Exploring a New Clinical Entity. Am J Gastroenterol 2012;107: 1898-1906.
Volta U, Bardella MT, Calabro A, Troncone R, Coazza GR. An Italian prospective multicentre survey on patients suspected of having non-celiac gluten sensitivity. BMC Med 2014;12:85.
Catassi C, Bai JC, Bonaz B, Bouma G, Calabro A, Carroccio A, et al. Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders. Nutrients 2013;5:3839-3853.
Jackson JR, Eaton WW, Cascella NG, Fasana A, Kelly DL. Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity. Psychiatr Q 2012;83(1):91-102.
Genuis SJ, Lobo RA. Gluten Sensitivity Presenting as a Neuropsychiatric Disorder. Gastroenterol Res Prac 2014 Epub.
Peters SL, Biesiekierski JR, Yelland GW, Muir JG, Gibson PR. Randomised clinical trial: gluten may cause depression in subjects with non-coeliac gluten sensitivity – an exploratory clinical study. Aliment Pharmacol Ther 2014;39(10):1104-12.
Shahbazkhani B, Sadeghi A, Malekzadeh R, Khatavi F, Etemadi M, Kalantri E, et al. Non-Celiac Gluten Sensitivity Has Narrowed the Spectrum of Irritable Bowel Syndrome: A Double-Blind Randomized Placebo-Controlled Trial. Nutrients 2015;7:4542-4554
Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, et al. Gluten causes gastrointestinal symptoms in subjects without celiac disease: A double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011;106:508-514.
Barmeyer C, Schumann M, Meyer T, Zielinski C, Zuberbier T, Siegmund B, et al. Long-term response to gluten-free diet as evidence for non-celiac wheat sensitivity in one third of patients with diarrhea-dominant and mixed-type irritable bowel syndrome. Int J Colorectal Dis. 2017;32(1):29-39.
Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 2013;145: 320-328.
Bach J. Infections and autoimmune diseases. J Autoimmun 2005; 25: 74-80.
Ford AC, Talley NJ, Walker MM, Jones MP. Increased prevalence of autoimmune disease in functional gastrointestinal disorders: case-control study of 23471 primary care patients. Aliment Pharmacol Ther 2014; 40: 827-834.
Carroccio A, D’Alcamo A, Cavataio F, Soresi M, Seidita A, Sciume C, et al. High Proportions of People With Nonceliac Wheat Sensitivity Have Autoimmune Disease or Antinuclear Antibodies. Gastroenterology 2015;149: 596-603.
Pope C, Mays N. Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. BMJ. 1995;311:42-45.
Snape D, Spencer L. The Foundations of Qualitative Research. In: Ritchie J, Lewis J, editors. Qualitative Research Practice. 2nd edition. London: Sage, 2004;p:3.
Fade S. Communicating and judging the quality of qualitative research: the need for a new language. J Hum Nutr Dietet 2003;16(3):139-49.
Wilcock PM, Brown GCS, Bateson J, Carver J, Machin S. Using patient stories to inspire quality improvement within the NHS Modernization Agency collaborative programmes. J Clin Nursing 2003;12(3):422-430.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res in Psychol 2006;3(2):77-101.
Bowling A. Mode of questionnaire administration can have serious effects on data quality. J Public Health 2005;27(3):281-91.
Fox J, Murray C, Warm A. Conducting research using web-based questionnaires: Practical, methodological, and ethical considerations. Int J Soc Res Methodol 2003;6(2):167-180.
Atkinson NL, Saperstein SL, Pleis J. Using the Internet for Health-Related Activities: Findings From a National Probability Sample. J Med Internet Res 2009;11(1).
Harding R, Lampe F, Molloy T, Sherr L. Do Web-Based and Clinica Samples of Gay Men Living with HIV Differ on Self-Reported Physical and Psychological Symptoms? A Comparative Analysis. J Med Internet Res 2015;17(3).
Van Selm M, Jankowski NW. Conducting Online Surveys Quality and Quantity. Kluwer J. 2006;40(3).
Shields C. ‘Giving voice’ to students: using the internet for data collection. Qualitative Research 2003;3(3).
Couper, M. Designing effective web surveys. New York: Cambridge University Press 2008.
Aziz I, Lewis N, Hadjivassiliou M, Winfield S, Rugg N, Kelsall A, et al. A UK study assessing the population prevalence of self-reported gluten sensitivity and referral characteristics to secondary care. Eur J Gastroenterol Hepatol 2014;26(1):33-39.
Molina-Infante J, Carroccio A. Suspected Nonceliac Gluten Sensitivity Confirmed in Few Patients After Gluten Challenge in Double-Blind, Placebo-Controlled Trials. Clin Gastroenterol Hepatol 2017;15(3):339-348.
Golley S, Corsini N, Topping D, Morell M, Mohr P. Motivations for avoiding wheat consumption in Australia: results from a population survey. Public Health Nutrition 2015;18(3):490-9.
Wentz, I. Food Sensitivities and Hashimoto’s 2015 [Online] Available from: http://thyroidpharmacist.com/articles/food-sensitivities-and-hashimotos [Accessed 17th February 2016]
Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet 1996; 347:369-71.
Mental Health Care. Discrimination and Stigma 2013. Available from: http://www.mentalhealthcare.org.uk/discrimination_and_stigma [Accessed 18th February 2016]
Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV et al. Increased Prevalence of Celiac Disease in Patients with Unexplained Infertility in the United States: A Prospective Study. J Reprod Med 2011;56(5-6):199-203.
Özgör B, Selimoğlu M. Coeliac disease and reproductive disorders. Scand J Gastroenterol 2010; 45(4):395-402.
Bold J, Rostami K. Non-coeliac gluten sensitivity and reproductive disorders. Gastroenterol Hepatol Bed Bench 2015;8(4):294-297.
Aguiar FM, Melo SB, Galvao LC, Rosa-e-Silva JC, dos Reis RM, Ferriani RA. Serological testing for celiac disease in women with endometriosis. A pilot study. Clin Exp Obstet Gynecol 2009;36(1):23-5.
Haines ML, Anderson RP, Gibson PR. Systematic review: the evidence base for long-term management of coeliac disease. Aliment Pharmacol Ther 2008;28(9):1042-66.