Is the prevalence of medically unsupervised activated charcoal use a cause for concern in patients with celiac disease?

Abstract

Background/Objectives: Celiac disease is an autoimmune disorder which causes an intolerance to gluten. Due to hidden sources, lack of clear labeling, and cross-contamination, it is not uncommon for people with celiac disease to inadvertently ingest gluten. Currently, the only treatment is a lifelong adherence to the gluten-free diet as medications to treat celiac disease are not available. It is important for pharmacists to be aware of this use of activated charcoal to provide patients with accurate recommendations. The purpose of this study was to identify the frequency of activated charcoal use in individuals with celiac disease as a remedy despite the lack of literature on the safety and efficacy of the practice; and to describe where the recommendation for activated charcoal use as a treatment for acute gluten ingestion is originating from. Methods: Using a descriptive study design, a web-based survey was sent to members of the celiac disease community via celiac disease center social media pages and through Facebook celiac support groups for participants who were at least 18 years of age and diagnosed with celiac disease, or the guardian of a child younger than 18 years of age with celiac disease. The survey was voluntary and anonymous. Participants were grouped based on method of diagnosis and whether they were using activated charcoal as a remedy for acute gluten intoxication. Resources participants utilized for treating acute gluten intoxication, amount of activated charcoal ingested and frequency, knowledge regarding spacing from other medications or vitamins, length of celiac disease diagnosis, and the effect activated charcoal had on the symptoms of gluten intoxication were also assessed. Chi-square was used to look for an association between activated charcoal use and non-physician references. Results: In subjects with celiac disease, the use of activated charcoal for treatment of accidental gluten ingestion was prevalent in 12% of the documented participants. Of those, 61.4% reported having only used activated charcoal one or two times. In total 26% (424/1613) of respondents had heard of using activated charcoal for gluten ingestion. The top three sources of information between all groups regarding remedies for anything related to celiac disease were social media networks (28.6-31.1%), gastroenterologist (19.4-23.3%), and YouTube (15.6-17.4%). The survey was primarily from US respondents but also included the United Kingdom, Brazil, and Australia, amongst others. Of those participants who had used activated charcoal, 47% (199/424) reported subjectively feeling a reduced severity and/or reduced duration of symptoms. A noted limitation includes the population, as mostly women were included in the analysis. Thus, findings may not be as generalizable. However, 60-70% of those diagnosed with celiac disease are female. Conclusion: In order to educate patients, gastrointestinal doctors should be made aware of the trend to trial activated charcoal by those with celiac disease. There is concern that 75% of those using activated charcoal failed to report the use to their physicians or continued to use it despite their doctor’s advice not to use it. Pharmacists should be aware of the off-label use of activated charcoal for accidental gluten ingestion in celiac disease. Pharmacists should educate patients with celiac disease that there is not sufficient evidence to support the use of activated charcoal and about the risks associated with concomitant prescription medication use.