IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v69y2009i4p623-631.html
   My bibliography  Save this article

"You don't need a prescription to go gluten-free": The scientific self-diagnosis of celiac disease

Author

Listed:
  • Copelton, Denise A.
  • Valle, Giuseppina

Abstract

We explore the social process of celiac disease diagnosis using fieldwork in the United States with two celiac support groups, interviews, and a virtual ethnography of an online discussion board. Distinguishing between medical diagnosis, self-diagnosis, and scientific self-diagnosis, we examine patients' varied paths to diagnosis and their attempts to legitimize symptoms as celiac disease. Web-based direct-access testing (DAT) permits patients to bypass physician requisition for testing in their diagnostic quest. While such laboratories do not diagnose disease per se, they provide the consumer with the scientific information necessary to self-diagnose. This scientific self-diagnosis grants individuals greater legitimacy for their claims of an illness identity than self-diagnosis alone, but less legitimacy than medical diagnosis. We examine the implications of scientific self-diagnosis for the social construction of diagnosis and professional and lay ways of knowing.

Suggested Citation

  • Copelton, Denise A. & Valle, Giuseppina, 2009. ""You don't need a prescription to go gluten-free": The scientific self-diagnosis of celiac disease," Social Science & Medicine, Elsevier, vol. 69(4), pages 623-631, August.
  • Handle: RePEc:eee:socmed:v:69:y:2009:i:4:p:623-631
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(09)00303-7
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Mykhalovskiy, Eric & Armstrong, Pat & Armstrong, Hugh & Bourgeault, Ivy & Choiniere, Jackie & Lexchin, Joel & Peters, Suzanne & White, Jerry, 2008. "Qualitative research and the politics of knowledge in an age of evidence: Developing a research-based practice of immanent critique," Social Science & Medicine, Elsevier, vol. 67(1), pages 195-203, July.
    2. Rhodes, Lorna A. & McPhillips-Tangum, Carol A. & Markham, Christine & Klenk, Rebecca, 1999. "The power of the visible: the meaning of diagnostic tests in chronic back pain," Social Science & Medicine, Elsevier, vol. 48(9), pages 1189-1203, May.
    3. Madden, Sue & Sim, Julius, 2006. "Creating meaning in fibromyalgia syndrome," Social Science & Medicine, Elsevier, vol. 63(11), pages 2962-2973, December.
    4. Lupton, Deborah, 1997. "Consumerism, reflexivity and the medical encounter," Social Science & Medicine, Elsevier, vol. 45(3), pages 373-381, August.
    5. Zavestoski, Stephen & Brown, Phil & McCormick, Sabrina & Mayer, Brian & D'Ottavi, Maryhelen & Lucove, Jaime C., 2004. "Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US," Social Science & Medicine, Elsevier, vol. 58(1), pages 161-175, January.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Ebeling, Mary, 2011. "'Get with the Program!': Pharmaceutical marketing, symptom checklists and self-diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 825-832, September.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Epstein, Steven, 2016. "The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”," Social Science & Medicine, Elsevier, vol. 165(C), pages 246-254.
    2. Greco, Monica, 2012. "The classification and nomenclature of ‘medically unexplained symptoms’: Conflict, performativity and critique," Social Science & Medicine, Elsevier, vol. 75(12), pages 2362-2369.
    3. Sim, Julius & Madden, Sue, 2008. "Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies," Social Science & Medicine, Elsevier, vol. 67(1), pages 57-67, July.
    4. Chiu, Stephen W.K. & Ko, Lisanne S.F. & Lee, Rance P.L., 2005. "Decolonization and the movement for institutionalization of Chinese medicine in Hong Kong: a political process perspective," Social Science & Medicine, Elsevier, vol. 61(5), pages 1045-1058, September.
    5. Stockl, Andrea, 2007. "Complex syndromes, ambivalent diagnosis, and existential uncertainty: The case of Systemic Lupus Erythematosus (SLE)," Social Science & Medicine, Elsevier, vol. 65(7), pages 1549-1559, October.
    6. Setti Rais Ali & Paul Dourgnon & Lise Rochaix, 2018. "Social Capital or Education: What Matters Most to Cut Time to Diagnosis?," Working Papers halshs-01703170, HAL.
    7. Nicole Brown, 2021. "The Social Course of Fibromyalgia: Resisting Processes of Marginalisation," IJERPH, MDPI, vol. 19(1), pages 1-13, December.
    8. Stefan Stremersch & Vardit Landsman & Sriram Venkataraman, 2013. "The Relationship Between DTCA, Drug Requests, and Prescriptions: Uncovering Variation in Specialty and Space," Marketing Science, INFORMS, vol. 32(1), pages 89-110, June.
    9. Lonardi, Cristina, 2007. "The passing dilemma in socially invisible diseases: Narratives on chronic headache," Social Science & Medicine, Elsevier, vol. 65(8), pages 1619-1629, October.
    10. Dyer, Thomas Anthony & Owens, Janine & Robinson, Peter Glenn, 2014. "The acceptability of care delegation in skill-mix: The salience of trust," Health Policy, Elsevier, vol. 117(2), pages 170-178.
    11. Ewa Malchrowicz-Mośko & Joanna Poczta, 2018. "Running as a Form of Therapy Socio-Psychological Functions of Mass Running Events for Men and Women," IJERPH, MDPI, vol. 15(10), pages 1-15, October.
    12. Higgins, Angela & Porter, Sam & O'Halloran, Peter, 2014. "General practitioners' management of the long-term sick role," Social Science & Medicine, Elsevier, vol. 107(C), pages 52-60.
    13. Cohn, Simon & Dyson, Clare & Wessely, S., 2008. "Early accounts of Gulf War illness and the construction of narratives in UK service personnel," Social Science & Medicine, Elsevier, vol. 67(11), pages 1641-1649, December.
    14. Ebeling, Mary, 2011. "'Get with the Program!': Pharmaceutical marketing, symptom checklists and self-diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 825-832, September.
    15. Reventlow, Susanne Dalsgaard & Hvas, Lotte & Malterud, Kirsti, 2006. "Making the invisible body visible. Bone scans, osteoporosis and women's bodily experiences," Social Science & Medicine, Elsevier, vol. 62(11), pages 2720-2731, June.
    16. Bloeser, Katharine & McCarron, Kelly K. & Merker, Vanessa L. & Hyde, Justeen & Bolton, Rendelle E. & Anastasides, Nicole & Petrakis, Beth Ann & Helmer, Drew A. & Santos, Susan & Litke, David & Pigeon,, 2021. "“Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness," Social Science & Medicine, Elsevier, vol. 284(C).
    17. Greenfield, Geva & Pliskin, Joseph S. & Feder-Bubis, Paula & Wientroub, Shlomo & Davidovitch, Nadav, 2012. "Patient–physician relationships in second opinion encounters – The physicians’ perspective," Social Science & Medicine, Elsevier, vol. 75(7), pages 1202-1212.
    18. Naraindas, Harish, 2006. "Of spineless babies and folic acid: Evidence and efficacy in biomedicine and ayurvedic medicine," Social Science & Medicine, Elsevier, vol. 62(11), pages 2658-2669, June.
    19. Duran, Eduardo, 2021. "Diagnostic slippage: Medical uncertainty and engaged patienthood in the case of atypical disorders," Social Science & Medicine, Elsevier, vol. 280(C).
    20. Shachar, Leeor, 2022. "“You become a slightly better doctor”: Doctors adopting integrated medical expertise through interactions with E-patients," Social Science & Medicine, Elsevier, vol. 305(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:69:y:2009:i:4:p:623-631. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.