At the age of 24, Vicky Taylor was living life to the full – a recently graduated law student studying for her qualifications and looking forward to starting her career as a solicitor.
Having trained as a dancer as a child, she spent every spare hour in the gym.
But it all changed suddenly one day in April 2018, when he found himself feeling tired and fatigued unexpectedly at the gym and had to sit down.
‘This wasn’t normal fatigue either – this was completely sudden fatigue,’ recalls Vicky, now 27.
When it happened again at her next session, Vicky’s personal trainer suggested she might be anemic, as low levels of iron can cause fatigue. Vicky’s doctor sent her for blood tests but they came back clear.
At the age of 24, Vicky Taylor was living life to the full – a recently graduated law student studying for her professional qualifications and hoping to start her career as a lawyer.
His doctor had another explanation. Unfortunately, he had recently attended a meeting about a ‘new’ condition and noticed some of Vicky’s symptoms.
“He said he wasn’t sure but he believed I could have it and I should be tested,” says Vicky, who lives in Chorley, Lancashire, with her parents.
She saw a specialist and, after tests, it was confirmed that she had mast cell activation syndrome, or MCAS. The condition is characterized by frequent symptoms of an anaphylactic reaction, such as a rash, sneezing and coughing.
This is something most people would associate with an allergy, but in some cases – like Vicky’s – it happens without one.
We all have mast cells, a type of immune cell, in the body’s connective tissue that were specifically directed to fight pathogens, which are not very useful in our highly refined lives. One theory is that it’s because we don’t have parasites that allergies are more common.
As mast cells don’t have pathogens to fight, they circulate and cause allergies, explains Hasan Arshad, professor of allergy and immunization at Southampton General Hospital.
In people with allergies, these cells react to allergens such as pollen proteins by releasing histamine, a powerful chemical. This causes many allergy symptoms in an attempt to protect the body.
‘Histamine usually affects a person’s eyes, nose, throat, lungs or stomach,’ explains Professor Arshad. Sneezing and coughing is the body’s way of removing allergens from the nose and airways respectively, the nose and eyes, washing them.
Having trained as a dancer as a child, she spent every spare hour in the gym. But it all changed suddenly one day in April 2018, when he unexpectedly found himself feeling tired and fatigued at the gym and had to sit down.
Congestion (caused by airway obstruction) and nasal congestion, both of which aim to prevent allergens from entering the airways, unfortunately also prevent air from entering. These symptoms may last long after the reaction occurs. With MCAS, histamine is produced for no apparent reason but is ‘natural’, or part of the individual’s makeup – unlike ‘normal’ allergy triggers, which are external, in the environment.
And in people with MCAS, mast cells break down frequently, releasing histamine. They are ‘Trigger happy’, says Professor Arshad. Because there is also no diagnostic test or even agreed upon criteria for diagnosis, the diagnosis depends on the clinical judgment of the physician and is confirmed by improvement after taking mast cell suppressants.
Suspecting it was MCAS, Vicky’s doctor explained that it was common and that few people he knew in the NHS could diagnose it, so he referred her to a private clinic in Oxford where specialists carried out tests including a skin test for common allergies. . such as dust, grass, pollen, animal dander and some foods. All were negative.
‘Then the counselor drew a line on my back with a pen and said: ‘Look’ – of course I couldn’t see but I could hear my mum gasping. The line was immediately surrounded by an angry red area from the pen touching my back.’
The counselor explained this was a common sign of MCAS as the body can react to something as simple as touching. ‘I was told there is no miracle cure. I would have to endure it, control my immune response with medication,’ he says. However, before long, Vicky experienced more symptoms including pulling in the head, neck and chest, and joint pain. An overwhelming and debilitating fatigue left him in bed.
Either way, MCAS changed Vicky’s life. “I’ve gone from someone who works out in the gym every day to someone who can’t work or get out of bed some days,” she says.
‘I couldn’t get up to study or do my coursework. After a while, I had to give it up. I also had to stop the gym because I was so tired and my joints hurt so much.
That was the hardest blow of all. I would always be alive. It was something I liked. It really affected my mental health.’ Fatigue and other ‘vague’ symptoms cause many patients to become very frustrated, says Professor Arshad.
‘The symptom of mast cell activation has many shapes and faces. Although the presentation may be the same for patients, the causes may be different.’ It’s not known why the tip occurs, causing a person to develop symptoms, he says. But the fact that people with MCAS can show ‘anything from a rash, swelling, to non-specific symptoms such as fatigue and headaches’ makes diagnosis difficult and can often involve visits to various specialists, a process that can take years.
“Often, when they come to me, their faith is low, they’ve been told there’s nothing that can be done, or that it’s “in their head,” says Professor Arshad. The good news is that the long-term prognosis is generally good, he adds, as patients often respond well to antihistamines.
Vicky’s doctors tried to control her symptoms with over-the-counter antihistamines, then prescribed stronger ones to reduce the effect of her immune system.
Her consultant also monitored her histamine levels regularly and has now identified wheat, gluten and alcohol as potential triggers, which she carefully avoids.
After a month of treatment, she started to feel a little better – but she would still have bad days of crippling fatigue that left her too tired to even leave the house. “Some days my mother had to come and put on my shoes and socks,” he says. ‘I was as shocked as anyone. I would often burst into tears of frustration.’
Vicky is now on strong antihistamines, which work for a while, but she still has bad days.
“I never even knew what mast cell activation disease was before I got it,” she says. ‘I think I’m lucky at least I was diagnosed straight away and wasn’t made to wait years like others. I’m telling my story to raise awareness if other people are still waiting to be diagnosed.’
Looking at the clock
This week: Go to the session by 8.30am
Our bowel movements are governed by our body clock and, after defecating overnight, our bowels usually need to be emptied around 8.30am.
Bowel movements can range from three times a day every day, to once a day, three times a week, says Julie Thompson of the charity Guts UK. But when you have to go, you should – because holding onto stools can cause the water in them to be reabsorbed, causing constipation. And making sure you have breakfast, even if it’s small, at the right time, will keep you regular – eating first thing triggers the gastrocolic response, a natural reflex that encourages bowel movement. Peter Whorwell, professor of medicine and gastroenterology, at the University of Manchester, says: “The stomach response only happens in the morning, usually within three hours of waking up, so if you skip breakfast you may not experience this again that day, which gradually it can lead to constipation.’