Introduction The cornerstone of treatment for coeliac disease is a gluten-free diet (GFD). However, adherence to a GFD is reported to vary between 50 and 70%. Recently other investigators have been reporting their preliminary findings using novel therapies (anti-zonulin or peptidases). Both these observations suggest that patients with coeliac disease may be seeking an alternative therapy for their disease.
In both irritable bowel syndrome and inflammatory bowel disease the incidence of complementary or alternative medicine (CAM) use is reported to be as high as 50%. There has never been any data assessing the use of CAM in patients with coeliac disease.
Methods We sought to assess whether patients with adult coeliac disease are taking complementary or alternative medicines (CAM) and also questioned this group about their interest in novel therapies.
This was a survey conducted in an out-patient setting. We also obtained information from a control group (without any GI disease) about their use of CAM.
Results 310 patients with coeliac disease completed the survey (83 male and age range 19–97, mean age 56). Patients were classified according to their presenting symptoms with 258 having “typical” symptoms (gastrointestinal presenting symptoms, anaemia or a combination of both) and 52 with neither (described as atypical, for example, osteoporosis). The control group was 477 individuals (228 male, age range 17–88, mean age 45.9).
The incidence of CAM in patients with coeliac disease was 21.6% (67/310) and in the control group the incidence of CAM usage was 27% (129/477), p=0.08. There were no statistically significant differences in incidence when comparing the two subgroups of coeliac disease.
Patients were also asked if they were satisfied with the GFD using a Likert scale. The outcomes reported were very poor 7.4% (23/310), poor 34.5% (107/310), average 34.8% (108/310), 19.4% good (60/310) and 3.9% excellent (12/310).
Finally patients were asked about their preferences for possible novel therapies. Patients were asked to arrange in order of preference 1–4 whether they would like a vaccine, genetically modified wheat, peptidase or anti-zonulin. Universally patients placed genetically modified wheat as the lowest preference. A vaccine was reported to be the first choice in 42% of patients, 35% for Anti- Zonulin and 23% for Peptidases.
Conclusion More than 40% of patients with coeliac disease are dissatisfied with their GFD. These patients are not taking CAM any more than individuals without coeliac disease. This suggests they do not view CAM as alternative to the GFD. However, all the patients in this survey were keen to consider novel therapies with a vaccine being the most preferred option.
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