Accepted for/Published in: JMIR Infodemiology
Date Submitted: Mar 11, 2022
Date Accepted: Nov 15, 2022
Twitter trends for celiac disease and the gluten-free diet: A cross-sectional descriptive analysis
ABSTRACT
Background:
Patients with chronic diseases consume educational information from numerous sources. These educational sources often are found online and within the realm of social media. Given the concerns for the accuracy of information distributed through social media, it is important to establish the credibility of the information patients may be exposed to. Few studies have characterized information available on social media in a systematic way. Celiac disease (CD) is an exemplar of the need to investigate online educational sources. CD is an autoimmune condition wherein the ingestion of gluten causes intestinal damage and if left untreated can result in significant nutritional deficiencies leading to cancer, bone disease, and death. Adherence to a strict life-long gluten-free diet (GFD) is an effective treatment that eliminates CD complications. However, this diet is difficult to follow due to cost and negative stigma regarding the GFD, including misinformation about what gluten is and who should avoid it. Given the significant impact that negative stigma and common misunderstandings has on the treatment for CD, this condition was chosen to investigate the credibility of sources of information distributed through social media.
Objective:
To address concerns related to the credibility of educational social media sources, this study explored trends on the social media platform Twitter about CD and the GFD to identify primary influencers and the type of information disseminated by these influencers.
Methods:
This cross-sectional study utilized data mining to collect tweets and users utilizing the hashtags #celiac and #glutenfree from an eight-month time frame. Tweets were then analyzed to describe who is disseminating information via this platform and the content, source, and frequency of such information.
Results:
More content was posted for #glutenfree (1,501.8 tweets per day) when compared to #celiac (69 tweets per day). A substantial proportion of the content were produced by a small percentage of contributors (i.e., “Superuser”), who could be categorized as self-promotors (e.g., blogger, writer, author; 13.9% of #glutenfree tweets and 22.7% of #celiac tweets), self-identified female family members (e.g., mother; 4.3% of #glutenfree tweets and 8% of #celiac tweets)), or commercial entities (e.g., restaurants, bakeries). On the other hand, relatively few self-identified scientific, non-profit, and medical provider users made substantial contributions on Twitter related to the GFD or CD (1% of #glutenfree tweets and 3.1% of #celiac tweets).
Conclusions:
Most material on Twitter was provided by self-promoters, commercial entities, or self-identified female family members which may not have been supported by current medical and scientific practices. Researchers and medical providers could potentially benefit from contributing more to this space to enhance the credibility of online resources for patients and families. Clinical Trial: N/A
Citation

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