Lucy's story

When I found out more about what it [MCAS] was, I almost went through a period of grieving. But after years of struggling with my health, and the exhaustion of having to strongly advocate for my health issues to be fully considered, I now look forward to each day. I can make plans for the future, which had previously seemed impossible. Even though I have reached a good place, it is certainly not the end of my health journey.

HOW IT BEGAN

I remember suffering with stomach problems from a young age, whilst also always being underweight and feeling tired. It was after giving birth to my son at age 32 that my health problems drastically increased. My stomach and gastrointestinal symptoms worsened in my twenties; I suffered with reflux, pain, bloating, burping, a constant sore throat, and loose bowels. I was diagnosed with Coeliac disease but sticking to a gluten-free diet did nothing for my issues. I went through more testing until my symptoms were put down to irritable bowel syndrome, but I didn’t feel this was completely accurate. 

Following the birth of my son when I was 32, my existing symptoms worsened, and I began experiencing new problems. I had intense pain throughout my body, brain fog, exhaustion, itching, tingling and numbness. I would also get acute periods of illness with sickness, diarrhoea, aches, and infections. I felt misunderstood and powerless; some doctors tried to tell me that my issues were due to anxiety and depression, whilst others just didn’t know what to do with me.  

I felt alone and trapped; all I felt able to do was cut out anything from my diet that triggered the symptoms, which led to me living on a very restricted diet because I was triggered by so many different foods. Eventually I paid to see an allergy and nutrition specialist at a private clinic. Getting help was the best thing for me as I got back onto a reasonably normal diet. I also began learning more about the impact of food, nutrition, and the environment on my health. Although I was feeling more positive, I was keen to get to the bottom of my chronic health problems. 

I think the GPs just didn’t know what to do with me.

TOWARDS A DIAGNOSIS

Despite being seen by multiple specialists for specific issues, both on the NHS and privately, I was never seen by anyone who looked at my issues as a whole rather than as separate symptoms. I used to get itchy spots on my torso that would blister and pop, as well as regular rashes, spontaneous bruising, and rosacea on my face. I would often feel dizzy when I stood up and used to be so light sensitive that I would have to wear sunglasses at the slightest hint of sun.  

After doing my own research into FODMAPs (Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols) and testing positive for fructose malabsorption, I was seen by a few dieticians on the NHS. They helped me to follow a low FODMAP diet, which made a huge difference to my digestive problems. When we found that I was potentially reacting to foods high in histamine, I was referred to a gastroenterologist on the NHS who believed I could possibly be suffering from MCAS. When I found out more about what it was, I almost went through a period of grieving, realising that I might never have the life that I had hoped for.  

When my son started school I retrained as a teaching assistant, but only managed 6 months. The school was dusty and mouldy and I react to both. There was also lots of standing, and in the playground it would be so cold that my other symptoms were triggered. I was exhausted and that’s when I started experiencing heart problems. I continued having many appointments with multiple doctors, whilst doing a lot of my own research into MCAS. 

With help from a gastroenterologist, I tried a lot of the recommended drugs. Unfortunately, the side effects were worse than my original symptoms, so I worked on managing my health through diet alone; eating a plant-based diet has greatly helped me. Over the next few years different symptoms came and went, as I continued seeing different specialists to rule out other conditions. In total I’ve seen 21 different specialists, ranging from gastroenterology to gynaecology. Luckily, I’ve had private medical insurance through my husband’s work, so have been able to see consultants a lot quicker than I might have done otherwise. 

Through trial and error, I have figured out what works for me. Although I am not symptom free, they no longer control my life.

GETTING SUPPORT

When I sprained my ankle fairly recently, I was told that it looked like I had sprained both ankles previously. Being aware of my MCAS got me thinking about the possibility of having Ehlers Danlos Syndrome (EDS), which is known for co-occurring with MCAS.  A rheumatologist that I saw immediately understood my life-long history of problems and she gave a pretty accurate description of my adult life: "lots of issues, always borderline, never diagnosed". She diagnosed me with Hypermobility Spectrum Disorder and explained that although there is no cure, there are things I can do to help manage my symptoms. Piecing together these different aspects of my health has enabled me to feel more positive.  

On a day-to-day basis it can be challenging; staying at people’s houses or going away on holiday is difficult. In time, I became aware of different triggers like stress, hot and cold temperatures, strenuous exercise, and fragrances. Knowing them, I was able to find ways to improve my symptoms without medications. Yoga and meditation helped me learn to slow down and listen to my body more. Being more in control of my symptoms with diet and life-style changes felt amazing. Loving what I learnt about food and health and wanting to share that with other people, I enrolled on the Institute for Integrative Nutrition’s health coaching course. Now I am a self-employed health coach and get to choose how much or little I work, which really helps me. 

For years I battled with my body and was left disappointed by what I couldn’t do. My hope was always to fix my ‘faulty’ body, but with time I’ve realised I was never going to achieve that. It’s only when I accepted my body, focusing on nourishing and supporting it, that I made progress.  After years of struggling with my health, and the exhaustion of having to strongly advocate for my health issues to be fully considered, I now look forward to each day. I can make plans for the future, which had previously seemed impossible. Even though I have reached a good place, it is certainly not the end of my health journey.  

 I continue to be fascinated by health and the human body, and in awe of the impact that small changes can make, so I shall continue to experiment – who knows what I might achieve!

Mast Cell Action: What can be done to help patients like Lucy?

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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