A woman named Louise Mountford, who runs a farm in Shropshire with her husband, was diagnosed with Sjögren's disease after four years of unexplained gut symptoms, including diarrhoea, bloating, and difficulties swallowing dry food. The disease affects secretory glands all over the body, causing dryness and other symptoms.
When Louise Mountford was blue-lighted to hospital in an ambulance with agonising pain just below her right ribs, she was convinced something in her stomach was about to burst.
‘I normally had a high pain threshold, but I was crying out with pain even though I was given morphine,’ says Louise, 66, who runs a farm in Shropshire with her husband David, 75. Scans and tests found no obvious problem, however. Instead doctors concluded it was ‘probably constipation’ and gave her an enema and intravenous paracetamol. But it wasn’t an isolated incident.
Louise had been struggling with a range of unexplained gut symptoms, including diarrhoea, bloating and difficulties swallowing dry food for more than a year.
‘I could go three days without a bowel movement and then have explosive diarrhoea,’ she says. ‘I also had painful bloating, which made me feel heavy and weepy. I thought it was strange to suddenly start having these symptoms in my late-50s. ’ Yet neither a gastroscopy nor a colonoscopy revealed anything wrong.
She also began to suffer with other new – apparently unrelated – symptoms: dry eyes, dry mouth, vaginal dryness, jaw pain and dental problems. After four years of mystifying symptoms, Louise Mountford was diagnosed with Sjögren’s disease, a little-known but relatively common condition where the immune system attacks any tissues that produce moisture in the body. She also had no tears and couldn’t cry, and her mouth was so dry she couldn’t swallow dry food.
The day she was rushed to hospital she’d been doubled up on the floor, rocking back and forth on her bedroom floor. She recalls: ‘The pain had been building up all day from 3pm when I was in a meeting. By 10pm I’d taken the maximum dose of paracetamol, and yet the pain was relentless. I’d never known anything like it.
’ Yet all standard hospital tests that day came back negative, again. By now frustrated and feeling desperate, she consulted a private gastroenterologist, who ordered a gut transit test – which involved swallowing a pill containing a tiny camera that travelled through her gut, recording images. But again nothing was found.
However, the specialist also ordered blood tests to check for antibodies associated with autoimmune diseases – and this proved to be a breakthrough after four years of mystifying symptoms. Louise was found to have antibodies called anti-Ro/SSA and anti-La – both are associated with Sjögren’s disease, a little-known but relatively common condition where the immune system attacks any tissues that produce moisture in the body.
It explained the odd mix of symptoms that had plagued Louise for four years – she saw a rheumatologist privately a month later who confirmed the diagnosis. As Professor Simon Bowman, a consultant rheumatologist at University Hospitals Birmingham NHS Trust, told the Daily Mail, Sjögren’s affects secretory glands all over the body, which include secretory glands from the mouth to the anus, in the nasal passages, breathing tubes, lungs, vagina and bowel.
Louise’s symptoms included dry eyes, dry mouth, jaw pain and dental problems.
‘I had no tears and couldn’t cry,’ she says Many of the gut symptoms are related to dryness and research by Limoges University Hospital in France, published in Advances in Rheumatology in 2021, found 95 per cent of the Sjögren’s patients studied had gut symptoms, such as abdominal pain and constipation. Sjögren’s used to be considered rare.
However, Dr Kelsey Jordan, a consultant rheumatologist at the University Hospitals Sussex NHS Foundation Trust, says it’s now believed to affect around 1 per cent of the population. But this could be an underestimate – some estimates put the true figure at half a million sufferers. Typically it’s women aged 40 to 60 who are affected.
However, 10 per cent of cases are men and younger people can also develop it. The exact cause is unclear, but certain genes are implicated. But lack of awareness of the condition, coupled with the varied nature of the symptoms, means it can often be overlooked by healthcare professionals, says Dr Jordan.
As a result, patients with milder symptoms may never be referred for specialist assessment or else get referred ‘many years after their symptoms first start, meaning they could miss out on treatment for years’
Sjögren's Disease Unexplained Gut Symptoms Dryness Dry Eyes Dry Mouth Vaginal Dryness Jaw Pain Dental Problems Autoimmune Disease Rheumatologist Rheumatology University Hospitals Birmingham NHS Trust University Hospitals Sussex NHS Foundation Tru Limoges University Hospital Advances In Rheumatology British Society Of Rheumatology
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