Having your symptoms dismissed — a daily experience for patients with coeliac disease

I can empathise with Arlene Brailey, who wrote about her son’s difficulty in getting diagnosed for Lyme disease. And also with Jane Allen, who commented on Brailey’s piece, and her experience of an adverse reaction to ciprofloxacin, where her symptoms were dismissed.

This is a daily experience for patients with coeliac disease, who typically present over many years to their GP with gastrointestinal symptoms and feelings of tiredness before they are tested. One in ten people in the UK and Europe are thought to have coeliac disease, but only 30% have a diagnosis​[1]​.

In my case, I presented to several GPs over several decades with gastrointestinal symptoms and bouts of chronic diarrhoea sometimes lasting weeks — my record was for a period of two months. I was often told that, as a pharmacist, I must know that diarrhoea was a mild, self-limiting condition for which there was no recommended treatment other than hydration salts. It was only when I had an attack of the skin condition dermatitis herpetiformis that a locum GP started a series of investigations, which led to my eventual diagnosis as a coeliac patient in my early 60s.

In the current pandemic, we all need to know the possible risks COVID-19 might pose to us because of our other concomitant conditions. Around a third of adults with coeliac disease may have reduced spleen function, and adults aged 16–65 years with this condition are in the government’s priority risk group number 6​[2]​​[3]​.

Happily, pharmacists can play an important role in signposting possible coeliac patients back to their GP for antibody testing. If patients coming into the pharmacy are continually suffering from gastrointestinal symptoms, being treated for anaemia, or feeling tired all the time (possibly owing to anaemia), they are candidates for antibody testing.

Tony Cartwright, retired pharmacist, Surrey