About one in a hundred people in the UK are coeliacs. There is a strong genetic link – for example, my sister has a one in ten chance of being a coeliac. Having said that, coeliac disease is under-diagnosed and so the actual statistics may be higher.
GPs are being trained to look for the symptoms, which can include patients presenting with Irritable Bowel, mouth ulcers, tingling fingers, hair loss, anaemia, and a general feeling of malaise.
Left untreated, Coeliac’s disease can lead to serious health complications – osteoporosis and a higher incidence of bowel and mouth cancer. A blood test will indicate the likelihood of coeliac’s disease, and the diagnosis is confirmed by endoscopy, where the villi will appear inflamed and flattened on biopsy (the top image in this post shows nice healthy villi, and the bottom image shows what mine look like, at least for a few more months). Coeliac disease can preset at any age: perhaps triggered by some incidence of physical stress or trauma.
I have no idea how long I’ve been a coeliac, but the last year and a half culminated in me feeling quite unwell and – eventually - being diagnosed. It all started on a scuba diving trip to Egypt, where the whole family contracted a tummy bug. Everyone got better within a few days – except me.
Back in the UK, a stool test revealed that I had shigella, a nasty, but common germ that causes diarrhea. The usual symptoms associated with this infection are rushing to the loo, cramping and abdominal pain. Most people get over this travellers’ diarrhoea without antibiotics - but my kind GP prescribed some ciprofloxacin and we assumed “that’s that”.
Fast forward 10 months and I still had a bad tum. The receptionists at Chapel Row Surgery became familiar with me waiting to see the GP or nurse and then walking out with yet another sample pot. Like anyone with a tummy problem, the first thing I learned to do on any trip out is make sure I knew precisely how to find the loo.
Often I’d wake up in the night with a sore tummy and doze on the sofa with the dogs to avoid disturbing the rest of the house. (I never thought I'd watch so many episodes of the Real Housewives of New York). However, it was not unmanageable: I visited Amsterdam and Venice and to the outside world probably looked completely healthy.
Strange other symptoms crept in – my mouth would bleed, but I couldn’t find a damaged tooth. My gums also bled every time I brushed my teeth and I had a red, sore throat and irregular periods. The consultant micro-biologist at West Berkshire hospital prescribed me more antibiotics, just in case the Shigella was still lurking undetected in my bowel. Thinking that this was still some lingering Egyptian bug, I started googling The Hospital for Tropical Diseases and wondering how I could get referred.
The nadir arrived on holiday this year. In Bonaire, I was rushing to the loo up to 15 times a day. Many coeliacs are of normal – or even – over-weight, but for me it meant losing seven kilos in three weeks. More frightening was the pain in my stomach and the fact that it began to seem hard to swallow even soft food. It was as if my digestive track was freezing up. Poor Clover (my daughter) – I was a rotten parent to her on that holiday and a complete wet blanket to all.
Back home, walking even my ancient dogs seemed to be a physical effort as my knees would ache. I was now secretly worried that there was something seriously wrong. Enough was enough: hello John Radcliffe hospital, hello consultant gastro-enterologist, hello colonoscopy and very quickly I was diagnosed with coeliac’s disease.
Those with coeliac’s are more likely to develop a secondary colitis called collagenous colitis. I have this too (probably triggered by the shigella) and the colitis accounted for the additional diarrhoea I experienced over the last year. I have no fond memories of Port Ghalib in Egypt (for a while I found it hard even to say the name of the country, as all it reminded me of was feeling yucky). But – in retrospect, picking up shigella is what lead to collagenous colitis, is what lead to the underlying diagnosis of coeliac’s disease.
And wow, once I started to remove gluten from my diet I felt so different. It is like a big, heavy black hat coming off your head. Suddenly, I had more energy, more mental acuity and my sore throat disappeared. Yet, it will take five years for my small bowel to heal completely, and I’ve had one set-back recently where I inadvertently ate some gluten (more of that in another post about avoiding cross-contamination).
Nevertheless, I’m very glad I was finally diagnosed and part of writing this blog to encourage anyone else with any of the symptoms above to request a simple blood test. The guidance is now to see your GP if you have any changes in bowel pattern that last for more than two weeks. It may not be coeliac’s, but with your small bowel linked so firmly to your immune system, it’s always worth checking out.
