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Unauthentic Information About Celiac Disease on Social Networking Pages: Is It a Matter of Concern in Celiac Disease Management?

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Abstract

Background

Facebook (FB) is the most popular online networking platform. Many celiac disease Facebook (CD-FB) pages spread awareness about celiac disease (CD). To get the latest information, patients with CD frequently follow such pages. However, little is known about whether such pages provide authentic and reliable information.

Aims

This study aims to investigate whether CD-FB pages spread misleading information to patients with CD.

Methods

On the Facebook social networking platform, CD-FB pages created in three celiac-prevalent countries (Italy, the USA, and India) were explored using different combinations of keywords. The type/category of the CD-FB page, country of origin, purpose, page web link, and number of followers/members were documented in a Microsoft spreadsheet. All posts distributed on selected CD-FB pages in the last 3 years were thoroughly screened.

Results

From August 2022 to March 2023, a total of 200 CD-FB pages from Italy, the USA, and India were explored. Out of these 200 pages, 155 CD-FB (Italy 70; the USA 46; India 39) were found eligible. Of them, 20 (13%) CD-FB pages (Italy 4; the USA 5; India 11) shared misleading information about CD. Surprisingly, 11 (8%) of these 20 pages (Italy 0; the USA 2; India 9) supported alternative treatment options for CD.

Conclusions

CD-FB pages are useful for disseminating celiac-disease-related information. While most such pages provide useful information, 13% of CD-FB pages allow misleading information. Patients with CD should consult their treating unit before following any uncertain information posted on CD-FB pages.

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Data availability

The data presented in this study are available on request from the corresponding author.

References

  1. Pantic I. Online social networking and mental health. Cyberpsychol Behav Soc Netw 2014;17:652–657. https://doi.org/10.1089/cyber.2014.0070.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Hoffman DL, Novak TP. Why do people use social media? Empirical findings and a new theoretical framework for social media goal pursuit. SSRN Electron J. 2012. https://doi.org/10.2139/ssrn.1989586.

    Article  Google Scholar 

  3. Iftikhar R, Abaalkhail B. Health-seeking influence reflected by online health-related messages received on social media: cross-sectional survey. J Med Internet Res 2017;19:e382. https://doi.org/10.2196/jmir.5989.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Eytan T, Benabio J, Golla V, Parikh R, Stein S. Social media and the health system. Perm J 2011;15:71–74.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Arad A, Barzilay O, Perchick M. The impact of Facebook on social comparison and happiness: evidence from a natural experiment. SSRN Electron J. 2017. https://doi.org/10.2139/ssrn.2916158.

    Article  Google Scholar 

  6. World Population Review. Facebook Users by Country 2022 2020. https://worldpopulationreview.com/country-rankings/facebook-users-by-country.

  7. Catassi C, Verdu EF, Bai JC, Lionetti E. Coeliac disease. Lancet. 2022. https://doi.org/10.1016/S0140-6736(22)00794-2.

    Article  PubMed  Google Scholar 

  8. Lionetti E, Catassi C. New clues in celiac disease epidemiology, pathogenesis, clinical manifestations, and treatment. Int Rev Immunol 2011;30:219–231. https://doi.org/10.3109/08830185.2011.602443.

    Article  PubMed  Google Scholar 

  9. Hall NJ, Rubin G, Charnock A. Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. Aliment Pharmacol Ther 2009;30:315–330. https://doi.org/10.1111/j.1365-2036.2009.04053.x.

    Article  CAS  PubMed  Google Scholar 

  10. Aljada B, Zohni A, El-Matary W. The gluten-free diet for celiac disease and beyond. Nutrients 2021;13:3993. https://doi.org/10.3390/nu13113993.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. Codex Alimentarius Commission. Foods for special dietary use for persons intolerant to gluten Codex STAN 118–1979. Codex Alimentarius Commission: Rome, Italy, 2008. n.d.

  12. US Food Drug Administration. Food labeling; gluten-free labeling of foods, final rule. Fed Regist 2013;78:47154–47179.

    Google Scholar 

  13. European Commission, Commission Regulation No 41/2009 of 20 January 2009 concerning the composition and labelling of foodstuffs suitable for people intolerant to gluten, 2009. http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2009:016:0003:0005:EN:PDF. n.d.

  14. Sansotta N, Amirikian K, Guandalini S, Jericho H. Celiac disease symptom resolution: effectiveness of the gluten-free diet. J Pediatr Gastroenterol Nutr 2018;66:48–52. https://doi.org/10.1097/MPG.0000000000001634.

    Article  PubMed  Google Scholar 

  15. Ciacci C, Ciclitira P, Hadjivassiliou M, Kaukinen K, Ludvigsson JF, McGough N et al. The gluten-free diet and its current application in coeliac disease and dermatitis herpetiformis. United Eur Gastroenterol J 2015;3:121–135. https://doi.org/10.1177/2050640614559263.

    Article  CAS  Google Scholar 

  16. Monachesi C, Verma AK, Catassi GN, Galeazzi T, Franceschini E, Perticaroli V et al. Quantification of accidental gluten contamination in the diet of children with treated celiac disease. Nutrients 2021;13:190. https://doi.org/10.3390/nu13010190.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  17. Catassi C, Fabiani E, Iacono G, D’Agate C, Francavilla R, Biagi F 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. https://doi.org/10.1093/ajcn/85.1.160.

    Article  CAS  PubMed  Google Scholar 

  18. Soldera J, Salgado K, Pêgas KL. Refractory celiac disease type 2: how to diagnose and treat? Rev Assoc Medica Bras 1992;2021(67):168–172. https://doi.org/10.1590/1806-9282.67.02.20200618.

    Article  Google Scholar 

  19. Green PHR, Fleischauer AT, Bhagat G, Goyal R, Jabri B, Neugut AI. Risk of malignancy in patients with celiac disease. Am J Med 2003;115:191–195. https://doi.org/10.1016/S0002-9343(03)00302-4.

    Article  PubMed  Google Scholar 

  20. Kalra N, Mukerjee A, Sinha S, Muralidhar V, Serin Y, Tiwari A et al. Current updates on the association between celiac disease and cancer, and the effects of the gluten-free diet for modifying the risk (Review). Int J Funct Nutr 2022;3:2. https://doi.org/10.3892/ijfn.2022.25.

    Article  Google Scholar 

  21. Muhammad H, Reeves S, Ishaq S, Mayberry J, Jeanes YM. Adherence to a gluten free diet is associated with receiving gluten free foods on prescription and understanding food labelling. Nutrients. 2017. https://doi.org/10.3390/nu9070705.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Al SA. Social media usage pattern and its influencing factors among celiac patients and their families. Saudi J Gastroenterol. 2020. https://doi.org/10.4103/sjg.SJG_495_19.

    Article  Google Scholar 

  23. Harris M. Rationale for using social media to collect patient-reported outcomes in patients with celiac disease. J Gastrointest Dig Syst. 2014. https://doi.org/10.4172/2161-069X.1000166.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Husby S, Koletzko S, Korponay-Szabó I, Kurppa K, Mearin ML, Ribes-Koninckx C et al. European society paediatric gastroenterology, hepatology and nutrition guidelines for diagnosing coeliac disease 2020. J Pediatr Gastroenterol Nutr 2020;70:141–156. https://doi.org/10.1097/MPG.0000000000002497.

    Article  PubMed  Google Scholar 

  25. Caulfield J. How to Do Thematic Analysis. 2019. https://www.scribbr.com/methodology/thematic-analysis/.

  26. Akinyode BF, Khan TH. Step by step approach for qualitative data analysis. Int J Built Environ Sustain 2018; https://doi.org/10.11113/ijbes.v5.n3.267.

  27. Syage JA, Green PHR, Khosla C, Adelman DC, Sealey-Voyksner JA, Murray JA. Latiglutenase treatment for celiac disease: symptom and quality of life improvement for seropositive patients on a gluten-free diet. GastroHep 2019;1:293–301. https://doi.org/10.1002/ygh2.371.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Alhassan E, Yadav A, Kelly CP, Mukherjee R. Novel nondietary therapies for celiac disease. Cell Mol Gastroenterol Hepatol 2019;8:335–345. https://doi.org/10.1016/j.jcmgh.2019.04.017.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Krishnareddy S, Stier K, Recanati M, Lebwohl B, Green PH. Commercially available glutenases: a potential hazard in coeliac disease. Ther Adv Gastroenterol 2017;10:473–481. https://doi.org/10.1177/1756283X17690991.

    Article  CAS  Google Scholar 

  30. Greco L, Gobbetti M, Auricchio R, Di Mase R, Landolfo F, Paparo F et al. Safety for patients with celiac disease of baked goods made of wheat flour hydrolyzed during food processing. Clin Gastroenterol Hepatol 2011;9:24–29. https://doi.org/10.1016/j.cgh.2010.09.025.

    Article  PubMed  Google Scholar 

  31. Scherf KA, Catassi C, Chirdo FG, Ciclitira PJ, Feighery CF, Gianfrani C et al. Statement of the prolamin working group on the determination of gluten in fermented foods containing partially hydrolyzed gluten. Front Nutr 2021;7:626712. https://doi.org/10.3389/fnut.2020.626712.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Jagetia GC, Aggarwal BB. “Spicing up” of the immune system by curcumin. J Clin Immunol 2007;27:19–35. https://doi.org/10.1007/s10875-006-9066-7.

    Article  CAS  PubMed  Google Scholar 

  33. Gupta KB, Mantha AK, Dhiman M. Mitigation of gliadin-induced inflammation and cellular damage by curcumin in human intestinal cell lines. Inflammation. 2021. https://doi.org/10.1007/s10753-020-01383-x.

    Article  PubMed  Google Scholar 

  34. Al-Ayadhi LY, Halepoto DM, Al-Dress AM, Mitwali Y, Zainah R. Behavioral benefits of camel milk in subjects with autism spectrum disorder. J Coll Phys Surg 2015;25:819–823.

    Google Scholar 

  35. Al-Ayadhi LY, Elamin NE. Camel milk as a potential therapy as an antioxidant in autism spectrum disorder (ASD). Evid-Based Complement Altern Med ECAM. 2013. https://doi.org/10.1155/2013/602834.

    Article  Google Scholar 

  36. Srivastava JK, Shankar E, Gupta S. Chamomile: a herbal medicine of the past with bright future. Mol Med Rep 2010;3:895–901. https://doi.org/10.3892/mmr.2010.377.

    Article  CAS  PubMed  Google Scholar 

  37. Banaee M, Soleimany V, Nematdoost HB. Therapeutic effects of marshmallow (Althaea officinalis L.) extract on plasma biochemical parameters of common carp infected with Aeromonas hydrophila. Vet Res Forum 2017;8:145–53.

    PubMed  PubMed Central  Google Scholar 

  38. Guo X, Cheng L, Liu J, Zhang S, Sun X, Al-Marashdeh O. Effects of licorice extract supplementation on feed intake, digestion, rumen function, blood indices and live weight gain of karakul sheep. Animals. 2019. https://doi.org/10.3390/ani9050279.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Tougeron D, Hentzien M, Seitz-Polski B, Bani-Sadr F, Bourhis J, Ducreux M et al. Severe acute respiratory syndrome coronavirus 2 vaccination for patients with solid cancer: review and point of view of a French oncology intergroup (GCO, TNCD, UNICANCER). Eur J Cancer 2021;150:232–239. https://doi.org/10.1016/j.ejca.2021.03.030.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  40. Zhen J, Stefanolo JP, de la Temprano MP, Tedesco S, Seiler C, Caminero AF et al. The risk of contracting COVID-19 is not increased in patients with celiac disease. Clin Gastroenterol Hepatol 2021;19:391–3. https://doi.org/10.1016/j.cgh.2020.10.009.

    Article  CAS  PubMed  Google Scholar 

  41. Lionetti E, Fabbrizi A, Catassi C. Prevalence of COVID-19 in Italian children with celiac disease: a cross-sectional study. Clin Gastroenterol Hepatol 2021;19:1075. https://doi.org/10.1016/j.cgh.2020.11.035.

    Article  CAS  PubMed  Google Scholar 

  42. Celiac disease foundation. Celiac Disease and COVID-19. CeliacOrg 2021. https://celiac.org/celiac-disease-and-covid-19/#:~:text=As%20the%20safety%20and%20efficacy,precaution%20when%20proceeding%20with%20vaccination. (accessed February 11, 2022).

  43. Costantino A, Topa M, Roncoroni L, Doneda L, Lombardo V, Stocco D et al. COVID-19 vaccine: a survey of hesitancy in patients with celiac disease. Vaccines 2021;9:511. https://doi.org/10.3390/vaccines9050511.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  44. Canadian Celiac Association. Celiac and Coronavirus 2021. https://www.celiac.ca/news-events/covid19/ (accessed May 4, 2021).

  45. Verma A, Gatti S, Galeazzi T, Monachesi C, Padella L, Baldo G et al. Gluten contamination in naturally or labeled gluten-free products marketed in Italy. Nutrients 2017;9:115. https://doi.org/10.3390/nu9020115.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  46. Koerner TB, Cleroux C, Poirier C, Cantin I, La Vieille S, Hayward S et al. Gluten contamination of naturally gluten-free flours and starches used by Canadians with celiac disease. Food Addit Contam Part Chem Anal Control Expo Risk Assess 2013;30:2017–2021. https://doi.org/10.1080/19440049.2013.840744.

    Article  CAS  Google Scholar 

  47. Farage P, de Medeiros Nóbrega YK, Pratesi R, Gandolfi L, Assunção P, Zandonadi RP. Gluten contamination in gluten-free bakery products: a risk for coeliac disease patients. Public Health Nutr 2017;20:413–416. https://doi.org/10.1017/S1368980016002433.

    Article  PubMed  Google Scholar 

  48. Lee HJ, Anderson Z, Ryu D. Gluten contamination in foods labeled as “gluten free” in the United States. J Food Prot 2014;77:1830–1833. https://doi.org/10.4315/0362-028X.JFP-14-149.

    Article  CAS  PubMed  Google Scholar 

  49. Mehtab W, Sachdev V, Singh A, Agarwal S, Singh N, Malik R et al. Gluten content in labeled and unlabeled gluten-free food products used by patients with celiac disease. Eur J Clin Nutr. 2021. https://doi.org/10.1038/s41430-020-00854-6.

    Article  PubMed  Google Scholar 

  50. Arias-Gastelum M, Cabrera-Chávez F, de Vergara-Jiménez MJ, Ontiveros N. The gluten-free diet: access and economic aspects and impact on lifestyle. Nutr Diet Suppl 2018;10:27–34. https://doi.org/10.2147/NDS.S143404.

    Article  Google Scholar 

  51. Llewelyn Bower S, Plogsted S, Mary KS. Celiac disease: a guide to living with gluten. Demos Medical Publisher; 2014.

    Google Scholar 

  52. Cuccu Z, McGough N. Continuing need for department of health and UK government support for gluten-free staple food on prescription. Gastrointest Nurs 2013;11:20–25. https://doi.org/10.12968/gasn.2013.11.9.20.

    Article  Google Scholar 

  53. Gatti S, Lionetti E, Balanzoni L, Verma AK, Galeazzi T, Gesuita R et al. Increased prevalence of celiac disease in school-age children in Italy. Clin Gastroenterol Hepatol. 2019. https://doi.org/10.1016/j.cgh.2019.06.013.

    Article  PubMed  Google Scholar 

  54. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med 2003;163:286–292.

    Article  PubMed  Google Scholar 

  55. Makharia GK, Verma AK, Amarchand R, Bhatnagar S, Das P, Goswami A et al. Prevalence of celiac disease in the northern part of India: a community based study. J Gastroenterol Hepatol 2011;26:894–900. https://doi.org/10.1111/j.1440-1746.2010.06606.x.

    Article  PubMed  Google Scholar 

  56. Lerner BA, Phan Vo LT, Yates S, Rundle AG, Green PHR, Lebwohl B. Detection of gluten in gluten-free labeled restaurant food: analysis of crowd-sourced data. Am J Gastroenterol 2019;114:792–797. https://doi.org/10.14309/ajg.0000000000000202.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Guennouni M, Admou B, Elkhoudri N, Bourrhouat A, Zogaam LG, Elmoumou L et al. Gluten contamination in labelled gluten-free, naturally gluten-free and meals in food services in low-, middle- and high-income countries: a systematic review and meta-analysis. Br J Nutr. 2021. https://doi.org/10.1017/S0007114521002488.

    Article  PubMed  Google Scholar 

  58. Thompson T, Lyons TB, Keller A, Jaffe N, Emerson-Mason L. Gluten-free foods cooked in shared fryers with wheat: a pilot study assessing gluten cross contact. Front Nutr 2021;8:652039. https://doi.org/10.3389/fnut.2021.652039.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

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Acknowledgment

We acknowledge and recognize the support and the help of all the celiac disease Facebook page administrators.

Funding

This research received no external funding.

Author information

Authors and Affiliations

  1. Department of Medicine Farncombe, Family Digestive Health Research Institute, McMaster University, Hamilton, ON, Canada

    Anil K. Verma & Chiara Monachesi

  2. Celiac Disease Research Laboratory, Polytechnic University of Marche, Ancona, Italy

    Anil K. Verma

  3. Division of Pediatrics, DISCO Department, Polytechnic University of Marche, Ancona, Italy

    Sara Quattrini, Giulia N. Catassi, Simona Gatti, Elena Lionetti & Carlo Catassi

  4. Department of Nutrition and Dietetics, Faculty of Health Science, Çukurova University, Adana, Turkey

    Yeliz Serin

  5. Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, 110029, India

    Govind K. Makharia

  6. Center for Celiac Research and Treatment, Mass General Hospital for Children, Boston, USA

    Carlo Catassi

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  1. Anil K. Verma
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  2. Sara Quattrini
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  7. Govind K. Makharia
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  8. Elena Lionetti
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Contributions

A.K.V.: extraction of celiac Facebook pages, original draft preparation, and manuscript submission. A.K.V, S.Q, and Y.S.: methodology. A.K.V., S.Q, Y.S, and C.M.: formal analysis. A.K.V., S.Q, Y.S, G.N.C., and C.M.: data curation. Y.S.: statistical analysis. S.G. and E.L.: resources. S.G, G.K.M. E.L., and C.C.: critical analysis and review of the manuscript. S.G., G.K.M., E.L., and C.C.: supervision of the study. S.G., E.L., and C.C.: design of the overall concept. C.C.: project administration and funding acquisition. All authors have read and agreed to the published version of the manuscript.

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Correspondence to Anil K. Verma.

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Verma, A.K., Quattrini, S., Serin, Y. et al. Unauthentic Information About Celiac Disease on Social Networking Pages: Is It a Matter of Concern in Celiac Disease Management?. Dig Dis Sci (2024). https://doi.org/10.1007/s10620-024-08486-7

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