International Journal of Celiac Disease
ISSN (Print): 2334-3427 ISSN (Online): 2334-3486 Website: Editor-in-chief: Samasca Gabriel
Open Access
Journal Browser
International Journal of Celiac Disease. 2015, 3(1), 17-24
DOI: 10.12691/ijcd-3-1-7
Open AccessArticle

Community Based Pilot Study of Diagnostic Paths to the Gluten Free Diet

Joan C. Stevenson1, , Kelle Rankin-Sunter2, Crystal Maki1, Sean Bruna1, MJ Mosher1 and Christopher E. Barrett1

1Anthropology Department, Westerm Washington University, Bellingham, Washington, U.S.A.

2Bellingham Gluten Information Group, Bellingham, Washington, U.S.A.

Pub. Date: January 19, 2015

Cite this paper:
Joan C. Stevenson, Kelle Rankin-Sunter, Crystal Maki, Sean Bruna, MJ Mosher and Christopher E. Barrett. Community Based Pilot Study of Diagnostic Paths to the Gluten Free Diet. International Journal of Celiac Disease. 2015; 3(1):17-24. doi: 10.12691/ijcd-3-1-7


Wheat consumption is increasing worldwide and also increasing is the frequency of celiac disease (CeD), a pathological response to wheat protein (gluten) in genetically susceptible individuals. Non-celiac gluten sensitivity (NCGS) is another, less studied wheat-induced pathology. The treatment for both is a gluten-free diet (GFD). More individuals choose the diet than predicted by the epidemiological 1-2% prevalence. A preliminary survey by questionnaire asked members and attendees of the local gluten information group (GIG) meetings and functions about their diagnostic experiences and symptom levels in order understand the increased demand for gluten-free foods. Same-aged and -sex friends participated as a comparative “control”. Mixed methods were used including content analyses of prose narratives and independent and paired t tests of symptom levels measured with Likert scales. This convenience sample, surveyed in 2011-2012, is mostly female (54 F, 5 M) with an average age of 54.6 ± 2.0 years. Most participants consulted medical professionals with mean time to diagnosis of 7 years determined mostly from “classic” presenting symptoms. Negative biopsies or blood tests and atypical symptoms that overlap other conditions delayed diagnosis. There were 43 and 16 participants with CeD and NCGS, respectively differing little in symptom levels. Self-diagnosis and use of naturopaths account for some of the “excess” individuals. General practitioners should be encouraged to get additional nutrition training and to discuss with patients dietary choices that support wellness and minimize the risk for pathological immune responses. Patients with CeD particularly need support and follow-up in the transition to a GFD.

presenting symptoms medically unexplained conditions chronic fatigue autoimmune thyroiditis

Creative CommonsThis work is licensed under a Creative Commons Attribution 4.0 International License. To view a copy of this license, visit


[1]  Khan MI, Anjum FM, Pasha I, Sameen A, Nadeem M, “Nutritional quality and safety of wheat-soy composite flour chapattis,” Brit Food J, 114 (2-3), 239-47, 2012.
[2]  GlobeScan, “Grow campaign: global opinion research–final Topline report 20 May 2011 for Oxfam”, <>.
[3]  Brown TA, Jones MK, Powell W, Allaby RG, “The complex origins of domesticated crops in the Fertile Crescent”, Trends Ecol Evolut, 24 (2), 103-9, Feb 2009.
[4]  Abadie V, Sollid LM, Barreiro LB, Jabri B, “Integration of genetic and immunological insights into a model of celiac disease pathogenesis,” Annu Rev Immunol, 29, 493-525, 2011.
[5]  Tatham AS, Shewry PR, “The S-poor prolamins of wheat, barley and rye: revisited,” J Cereal Sci, 55 (2), 79-99, Mar 2012.
[6]  Catassi C, Kryszak D, Bhatti B, Sturgeon C, Helzlsouer K, Clipp SL, Gelfond D, Puppa E, Sferruzza A, Fasano A, “Natural history of celiac disease autoimmunity in a USA cohort followed since 1974,” Ann Med, 42 (7), 530-8, Oct 2010.
[7]  Kang JY, Kang AHY, Green A, Gwee KA, Ho KY, “Systematic review: worldwide variation in the frequency of coeliac disease and changes over time,” Aliment Pharm Therap, 38 (3), 226-45, Aug 2013.
[8]  Mustalahti K, Catassi C, Reunanen A, Fabiani E, Heier M, McMillan S, Murray L, Metzger M-H, Gasparin M, Bravi E, Mäki and Members of the Coeliac EU Cluster, Epidemiology, “The prevalence of celiac disease in Europe: results of a centralized, international mass screening project,” Ann Med, 42 (8 ), 587-95. Dec 2010.
[9]  Reilly NR, Green PHR, “Epidemiology and clinical presentations of celiac disease,” Sem Immunopathol, 34 (4), 473-8, Jul 2012.
[10]  Ma MX, John M, Forbes GM, “Diagnostic dilemmas in celiac disease,” Exp Rev Gastroenterol Hepatol, 7 (7), 643-55, Sep 2013.
[11]  Nejad MR, Rostami K, Pourhoseingholi MA, Mojarad EN, Habibi M, Dabiri H, Zali MR, “Atypical presentation is dominant and typical for coeliac disease,” J Gastrointest Liver, 18 (3), 285-91, Sep 2009.
[12]  Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR, “Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial,” Am J Gastroenterol, 106 (3), 508-14, Mar 2011.
[13]  Biesiekierski JR, Newnham ED, Shepherd SJ, Muir JG, Gibson PR, “Characterization of adults with a self-diagnosis of nonceliac gluten sensitivity,” Nutr Clin Pract 29 (4), 504-9, Aug 2014.
[14]  Brown AC, “Gluten sensitivity: problems of an emerging condition separate from celiac disease,” Exp Rev Gastroenterol Hepatol, 6 (1), 43-55, Feb 2012.
[15]  Sapone A, Bai JC, Ciacci C, Dolinsek J, Green PHR, Hadjivassiliou M, Kaukinen K, Rostami K, Sanders DS, Schumann M, Ullrich R, Villalta D, Volta U, Catassi C, Fasano A, “Spectrum of gluten-related disorders: consensus on new nomenclature and classification,” BMC Med, 10, 13, Feb 2012.
[16]  Sanders DS, Aziz I, “Non-celiac wheat sensitivity: separating the wheat from the chat!” Am J Gastroenterol, 107, 1908-12, Dec 2012.
[17]  Freeman HJ, “Detection of adult celiac disease using duodenal screening biopsies over a 30-year period,” Can J Gastroenterol, 27 (7), 405-8, Jul 2013.
[18]  Tjon JM-L, van Bergen J, Koning F, “Celiac disease: how complicated can it get?” Immunogenetics, 62 (10), 641-51, Oct 2010.
[19]  Soares FLP, Matoso RD, Teixeira LG, Menzes Z, Pereira SS, Alves AC, Batista NV, de Faria AMC, Cara DC, Ferreira AVM, Alvarez-Leite JI, “Gluten-free diet reduces adiposity, inflammation and insulin resistance associated with the induction of PPAR-alpha and PPAR-gamma expression,” J Nutr Biochem, 24 (6), 1105-11, Jun 2013.
[20]  Roberts, Jr. WA, “Gorging on gluten-free,” Prepared Foods, 182 (6), 31-6, June 2013.
[21]  Kent PS,”Is going gluten free the next fad diet?”, J Renal Nutr, 23 (2), e47-e50, Mar 2013.
[22]  Copelton DA, Valle G, “You don’t need a prescription to go gluten-free: the scientific self-diagnosis of celiac disease,” Soc Sci Med, 69 (4), 623-31, Aug 2009.
[23]  Fleming SA, Gutknecht NC, “Naturopathy and the primary care practice,” Prim Care, 37 (1), 119-36, Mar 2010.
[24]  García-Manzanares A, Lucendo LJ, “Nutritional and dietary aspects of celiac disease,” Nutri Clin Pract, 26 (2), 163-73, Apr 2011.
[25]  Shepherd SJ, Gibson PR, “Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease,” J Hum Nutr Diet, 26 (4), 349-58, Aug 2013.
[26]  Tursi A, Elisei W, Giorgetti GM, Brandimarte G, Aiello F, “Complications in celiac disease under gluten-free diet,” Digest Dis Sci, 54 (10), 2175-82, Oct 2009.
[27]  Miranda J, Lasa A, Bustamente MA, Churruca I, Simon E, “Nutritional differences between a gluten-free diet and a diet containing equivalent products with gluten,” Plant Food Hum Nutr, 69 (2), 182-7, Jun 2014.
[28]  Newell A, Phillips C, Whatcom County Community Health Improvement Plan, Whatcom Community Foundation, 2013. Available:
[29]  Leffler DA, Dennis M, George JBE, Jamma S, Cook EF, Kelly CP, Schuppan D, “A validated disease-specific symptom index for adults with celiac disease,” Clin Gastroenterol Hepatol, 7 (12), 1328-34, Dec 2009.
[30]  Ghoshal UC, Mehrotra M, Kumar S, Ghoshal U, Krishnani N, Misra A, Aggarwal R, Choudhuri G, “Spectrum of malabsorption syndrome among adults & factors differentiating celiac disease and tropical malabsorption,” Ind J Med Res, 136 (3), 451-9, Sep 2012.
[31]  Volta U, Villanacci V, “Celiac disease: diagnostic criteria in progress,” Cell Mol Immunol, 8 (2), 96-102, Mar 2011.
[32]  Vilppula A, Kaukinen K, Luostarinen L, Krekelä I, Patrikainen H, Valve R, Luostarinen M, Laurila K, Mäki M, Collin P, “Clinical benefit of gluten-free diet in screen-detected-older celiac disease patients,” BMC Gastroenterol, 11, 136, Dec 2011.
[33]  Carroccio A, Mansuelo P, Iacono G, Soresi M, D’Alcamo A, Cavataio F, Brusca I, Florena AM, Ambrosiano G, Seidita A, Pirrone G, Rini GB, “Non-celiac wheat sensitivity diagnosed by double-blind placebo-controlled challenge: exploring a new clinical entity,” Am J Gastroenterol, 107 (12), 1898-1906, Dec 2012.
[34]  Singh P, Makharia GK, “Non-classical celiac disease: often missed,” International Journal of Celiac Disease, 2 (3), 76-85, Sep 2014.
[35]  Schaefert R, Hausteiner-Wiehle C, Häuser W, Ronel J, Hermann M, Hennigsen P, “Non-specific, functional, and somatoform bodily complaints,” Deut Ärzteblatt International, 109 (47), 803-13, Nov 2012.
[36]  Soler JK, Okkes I, “Reasons for encounter and symptom diagnoses: a superior description of patient’s problems in contrast to medically unexplained symptoms (MUS),” Fam Pract, 29 (3), 272-82, Jun 2012.
[37]  Kim SE, Chang L, Overlap between functional GI disorders and other functional syndromes: what are the underlying mechanisms?” Neurogastroent Motil, 24 (10), 895-913, Oct 2012.
[38]  Peek CJ, Baird MA, Coleman E, “Primary care for patient complexity, not only disease,” Fam Syst Health, 27 (4), 287-302, Dec 2009.
[39]  Torabi MR, Tao R, Jay SJ, Olcott C, “A cross-sectional survey on the inclusion of tobacco prevention/cessation, nutrition/diet, and exercise physiology/fitness education in medical school curricula,” J Natl Med Assoc, 103 (5), 400-6, May 2011.
[40]  Adams KM, Kohlmeier M, Powell M, Zeisel SH, “Nutrition in medicine: nutrition education for medical students and residents,” Nutri Clin Pract, 25 (5), 471-80, Oct 2010.
[41]  Kushner RF, Van Horn L, Rock CL, Edwards MS, Bales CW, Kohlmeier M, Akabas SR, “Nutrition education in medical school: a time of opportunity,” Am J Clin Nutr, 99 (5), 1167S-73S, May 2014.
[42]  Rodrigo L, Blanco I, Bobes J, de Serres FJ, “Clinical impact of a gluten-free diet on health-related quality of life in seven fibromyalgia syndrome patients with associated celiac disease,” BMC Gastroenterol, 13, 157, Nov 2013.
[43]  Mahadev S, Simpson S, Lebwohl B, Lewis SK, Tennyson CA, Green PHR, “Is dietician use associated with celiac disease outcomes?” Nutrients 5 (5), 1585-94, May 2013.
[44]  Herman ML, Rubio-Tapia A, Lahr BD, Larson JJ, Van Dyke CT, Murray JA, “Patients with celiac disease are not followed up adequately,” Clin Gastroenterol Hepatol, 10 (8), 893-99, Aug 2012.
[45]  Bouchez-Mahiout I, Pecquet C, Kerre S, Snégaroff J, Raison-Peyron N, Laurière M, “High molecular weight entities in industrial wheat protein hydrolysates are immunoreactive with IgE from allergic patients,” J Agricult Food Chem, 58 (7), 4207-15, Apr 2010.
[46]  Dewar DH, Donnelly SC, McLaughlin SD, Johnson MW, Ellis HJ, Ciclitiri PJ, “Celiac disease: management of persistent symptoms in patients on a gluten-free diet,” World J Gastroenterol, 18 (4),1348-56, Aug 2012.
[47]  Nachman F, del Campo MP, Gonzalez A, Corzo L, Vazquez H, Foggia C, Smecuol E, Sanchez MIP, Niveloni S, Sugai E, Maurino E, Bai JC, “Long-term deterioration of quality of life in adult patients with celiac disease is associated with treatment noncompliance,” Digest Liver Dis, 42 (10), 685-91, Oct 2010.
[48]  Zanini B, Lanzarotto F, Mora A, Bertolazzi S, Turini D, Cesana B, Donato F, Ricci C, Lonati F, Vassallo F, Carcella C, Lanzini S, “Five year time course of celiac disease serology during a gluten free diet: results of a community based “CD-Watch” program. Digest Liver Dis 42 (12), 865-70, Dec 2010.
[49]  Valitutti F, Barbato M, Cucchiara S, “Letter: coeliac disease and ischaemic heart disease—a true risk factor?” Aliment Pharmacol Ther, 37 (11), 1116-7, Jun 2013.
[50]  Gupta RS, Kim JS, Barnathan JA, Amsden LB, Tummala LS, Holl JL, “Food allergy knowledge, attitudes and beliefs: focus groups of parents, physicians and the general public. BMC Pediatrics, 8, 36, Sep 2008.
[51]  Gupta RS, Springston EE, Kim JS, Smith B, Pongracic JA, Wang X, Holl JL, “Food allergy knowledge, attitudes, and beliefs of primary care physicians,” BMC Pediatrics, 125 (1), 126-32, Jan 2010a.
[52]  Gupta RS, Springston EE, Smith B, Kim JS, Pongracic JA, Wang X, Holl JL, “Food allergy knowledge, attitudes, and beliefs of parents with food-allergic children in the United States,” Pediatr Allergy Immu, 21 (6), 927-34, Sep 2010b.
[53]  Kohout P, “Nutrition in celiac disease,” International Journal of Celiac Disease, 2 (3), 115-7, Sep 2014.
[54]  Crowe SE, “Management of celiac disease: beyond the gluten-free diet,” Gastroenterol, 146 (7), 1594-6, Jun 2014.