While I no longer get admitted to hospital in the middle of the night - I spend my days avoiding all of my triggers to keep my symptoms under control, which can be difficult sometimes.
I think my MCAS symptoms may have been present for years, but were attributed to my other diagnoses. My health issues really began after an adverse reaction to a medication. I was later diagnosed with classic and vestibular migraine, but this didn’t explain other symptoms I developed, such as increased fatigue, painful muscles and joints, and a tight chest. After also getting diagnosed with fibromyalgia something still didn’t add-up to me; I was referred for testing for POTS, but despite fainting on the tilt table and having obvious blood pooling, was told I simply had low blood pressure.
I suffer with tachycardia, dizziness, light headedness, and drastic changes in my blood pressure. Over a year after being dismissed as just having low blood pressure, my doctor was still concerned and I was referred to a cardiologist. After various tests, it was found that I have autonomic issues. I was also diagnosed with Ehlers Danlos Type 3 around that time.
One of my most problematic triggers is heat; I instantly get a very hot, pink and sore face. I also suffer from facial flushing and feeling a burning sensation. I was taken to A&E several times in the middle of the night as my whole body felt as though it was on fire, and I was shaking uncontrollably. But because my temperature was always normal, I got discharged soon after.
Before being diagnosed with MCAS, I didn't even know what it was.
After many blood tests that always came back as normal, and even being tested for rare forms of cancer, I chose to switch from NHS care to private. I spent a lot of money on seeing different specialists before finally seeing a neuro-gastroenterologist who really listened to me, and gave me a very basic low histamine diet sheet to follow, as well as some antihistamines. But it was my cardiologist who first began to question whether I had MCAS.
After the cardiologist first brought up the possibility of having MCAS, I spent a lot of time and money seeing different private specialists, feeling I was not finding answers through the NHS. Seeking diagnosis and treatment through the NHS really took its toll on me physically and emotionally. Nobody would talk to me about MCAS - when I brought it up, the doctors wouldn’t engage with me about it, one told me it probably didn’t exist.
When advised to follow certain restrictive diets I was always confused by the long lists of ‘bad’ foods, and what I could safely eat. I ended up eating bland foods over and over in fear of having a reaction, as a result mealtimes felt stressful rather than enjoyable. Thankfully, a specialist dietician introduced me to the Swiss Interest Group Histamine Intolerance (SIHGI) food compatibility list for histamine as a guide to prepare my meals. It was so helpful to have a list of ‘allowed’ foods to work from and it felt positive to focus on those that I could tolerate rather than on those I could no longer eat.
I assumed that getting a diagnosis, or at least being tested for MCAS, would be straightforward.
That was definitely not the case.
I react to temperature (heat), perfumes and other scents, certain personal care products (soaps, shampoo etc), certain foods (especially those high in histamine), cleaning products, airless environments, and pollen.
Over time I began to love cooking low histamine recipes. I’ve also found that cooking has been a great way to connect with others with MCAS through social media, particularly Instagram. I feel less alone when chatting with others that have MCAS or similar conditions, and it’s wonderful to be able to share tips and tricks, and recipe ideas too! There’s something very powerful about that sense of community, particularly with a lesser-known condition that friends and family may struggle to understand.
Most doctors I see now have no idea what MCAS is, or tell me they have ‘vaguely heard of it’. Even those with an ‘interest’ in mast cell disorders tell me it is a controversial condition, ‘fashionable’, or doesn’t exist. I hope that in the near future there is more recognition of Mast Cell Disorders. I hope to bring enjoyment and happiness about cooking for restrictive diets by sharing recipes and stories on my blog throughthefibrofog.com.
It is only with greater education of medical professionals, and awareness both inside and outside the medical community, that future generations will get the diagnosis and treatment they deserve.
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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