This week I am celebrating a hard-won victory. In front of me I have a plate full of broccoli and green beans, and I‘m about to eat the lot. Whilst this will seem like a long way from most people’s idea of a dream come true, it is the result of many months work and marks great progress for me. For the last two years I have only been able to eat six foods. I lost my tolerance to nearly all food, drink and medication when I became sick with Mast Cell Activation Syndrome (MCAS).
At 31, I had been fairly healthy for most of my life. A few viruses here and there, the occasional flu, and the odd bout of illness that I usually chalked up to food poisoning. One day in 2014 I had a bout of illness that I initially mistook as one of these episodes of food poisoning. This time however, the severity and sudden onset left me exhausted. My skin burned as if I had been scalded. All across my body I had a skin rash as if I had brushed against nettles. I had intense nausea and vomiting, and bone pain that felt as though my legs were caught in a tightening vice. The pain in my chest felt like acid, I was gasping for air, and I had gastrointestinal bleeding. I felt faint when I stood up, and the skin in my mouth peeled off like wet paper, leaving my mouth raw with blisters. My heart rate shot up to 160 beats per minute.
Although the attack lasted only an hour, I was left completely shattered. Unfortunately, it turned out that this would not be the last episode. Within two weeks I was having multiple attacks a day. I quickly noticed that my sickness was linked to eating. If I didn't eat my symptoms would improve, so I removed foods that made me react the most and I waited for an appointment with the doctor. It turned out that reducing my diet only offered temporary relief. Soon the sickness would crescendo again and I had to remove more foods, and then more again. I had to take sick leave from my job and began a year long process of trying to discover what had caused me to become sick. I was referred to specialist after specialist, but there were no answers in sight. Throughout this time, the ‘reactions’ continued to worsen, and I ate less and less variety in an attempt to get things under control, until I was left with only six foods to eat.
Within two weeks I was having multiple attacks a day. I quickly noticed that my sickness was linked to eating. If I didn’t eat my symptoms would improve, so I removed foods that made me react the most and I waited for an appointment with the doctor
Predictably, after most of the standard tests came back normal, my doctors quickly started to suggest psychological causes for my illness. Forced to do my own research to try and piece together what was happening to me, I discovered mast cell activation syndrome, a recently recognised and poorly understood disorder. I requested a blood test for an enzyme called tryptase. My doctor reluctantly agreed, but assured me that the result would be normal, as mast cell diseases were ‘very rare’. However, the test result showed that my level was elevated, a likely sign of a mast cell activation disorder. I was relieved to finally begin working towards a diagnosis and hopefully recovery. Tryptase is a commonly relied upon bio marker for mast cell disease through the NHS, however, according to much of the literature it is a poor diagnostic indicator for many MCAS patients. For me it was a lifeline that meant my illness was now taken seriously, and more importantly, treated.
Since this test result I have been given medication that is slowly helping me to tolerate food again, and has taken the edge off my daily symptoms. In spite of losing the ability to eat normally, not being able to eat many foods is not the hardest thing about having a restricted diet. I don't miss eating pizza: I miss going out with friends to eat pizza. I miss being able to go abroad and stay in hotels. If I am exposed to perfumes, aftershave, or petrol fumes, I get sick. Public transport is a minefield. Over time I have found other people with mast cell disorders, many of whom have restricted diets like me. The advice from this growing community is invaluable, because aside from medication I have never been given any guidance on how to manage my illness from a medical professional. As one consultant told me 'there simply isn't enough known about it yet to tell you what will happen'.
I believe that no one should be without help or left to fend for themselves when they're sick. The research into MCAS is growing, as is clinical recognition, but there is still a long way to go before patients get the right help, which is why I'm now spending as much energy as possible supporting the work of charities devoted to undiagnosed and rare diseases. One day, I hope that patients with this illness will get the right medical treatment and support from the beginning without being passed from doctor to doctor with no answers.
My hope is that we can work towards getting more effective, considerate treatment for mast cell activation syndrome sufferers and importantly, more research in the UK. When we get there, I'm looking forward to celebrating…...hopefully, if I keep trying, with a cake.
MCAS is a poorly recognised condition within the NHS. It has no natural ‘home’ in any one specialism, with patients often having to see multiple doctors for various symptoms without a conclusive diagnosis. There is a need to raise awareness around mast cell disorders, listen to patient experiences, and support more research to better understand and treat the condition effectively. It is our ambition that all patients will be supported in a way that enables them to bring their condition under control and live a more normal life.
The research into MCAS is growing, particularly in the US and Germany, as is clinical recognition of the symptoms. MCAS patients can have many similar recognisable symptoms, it just takes time to take a detailed history and recognise the patterns.
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