This week I am celebrating a hard won victory. In front of me is a plate full of broccoli and green beans, and I am 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).
One day in 2014 I had a bout of illness that I initially mistook for food poisoning. The severity and sudden onset of the episode left me exhausted. My skin burned as if I had been scalded. All across my body I had the kind of rash you get after you have brushed against stinging nettles. I had sudden, intense nausea and bone pain, as though my legs were caught in a vice that was being slowly tightened. The stomach pain in my chest felt like acid, I was gasping for air, and I had gastrointestinal bleeding. I felt faint whenever 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, my 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.
TOWARDS A DIAGNOSIS
Predictably, my doctors started to suggest psychological causes for my illness, but not before I had discovered mast cell activation syndrome, a recently recognised and poorly understood disorder. I requested a blood test for an enzyme called tryptase. The test result showed that my level was elevated, a sign of mast cell disease, and I was relieved to finally begin my journey towards diagnosis. Tryptase is the only available bio marker for mast cell disease through the NHS, however for most MCAS sufferers it is a poor indicator of their illness. 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 food is far from the hardest thing about having a restricted diet. I don’t miss eating pizza: I miss going out with friends to eat the 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 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 and vulnerable. 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 my energy supporting the work of charities devoted to mast cell diseases. One day, I hope that patients with this illness will get the right medical treatment and support from the beginning, not having to fight and not being passed from doctor to doctor like a live grenade. We are working towards getting effective and considerate treatment. When we get there, I’m looking forward to celebrating……hopefully, with a cake.
Rebecca Schult has Mast Cell Activation Syndrome (MCAS), a recently defined condition that affects multiple systems of the body. The condition is difficult to diagnose and treat, and has limited recognition in the UK. Rebecca supports the newly founded charity Mast Cell Action, which promotes recognition and research for sufferers of Mast cell activation disorders in the UK. Prior to developing MCAS Rebecca worked in the heritage sector and the NHS.