My journey to a mast cell activation syndrome diagnosis

I will always remember the first step on my journey to a mast cell activation syndrome diagnosis - the day my symptoms began. Or at least the day that one particular symptom began - flushing of my face. A symptom that many with MCAS experience amongst a host of others.

I was walking towards a library in central London on a sunny day thinking about how it would be nice to eat lunch in a nearby park, but also that I must have a mild virus as my face felt so hot. It continued to feel hot for the rest of the day, and then the next and the next. I felt a bit low, but put it down to my other conditions - POTS / dysautonomia, EDS, fibromyalgia and vestibular migraine. But as the weeks went on I didn't feel any better.

Please note that I am not a doctor, and this post is simply my story and for informational purposes only. It does not constitute medical advice in any way.

Jump to:

• Realising I didn't have a virus
• The night things got serious
• Searching for the cause of symptoms
• A tentative MCAS diagnosis
• And then searching for a MCAS doctor
• MCAS treatment options
• Medication
• Low histamine diet
• Lifestyle
• Exercise
• MCAS resources
• Related posts
• 💬 Comments

Realising I didn't have a virus

Many of us, I think, try and tell ourselves that symptoms are just a virus, from another condition or that we are simply feeling a bit under the weather. I did all those things when my MCAS symptoms started to flare up. At that point I hadn't ever heard of MCAS, and wouldn't for some time, and so told myself all kinds of things as I couldn't face the idea of having another condition.

It took at least a month of having a hot flushed face for me to realise that something was wrong. So I went to my GP (general practitioner) and asked what he thought. He put it down to my other conditions, and to fibromyalgia in particular.

Then as I went back and back saying it was getting worse I was sent for a battery of tests. The most worrying being for carcanoid syndrome, and others including serotonin syndrome (due to some medication I was on) as well as running general rheumatological tests. All came back negative. Yet this took months. Months of fear, and worry and not knowing what was wrong with me.

The night things got serious

Then one night I ended up in emergency care at 3am. It was mid-February and the temperature was freezing or close to it overnight (in Celcius). Yet I was baking hot each night. Sleeping with the window open and a sheet rather than a duvet. One night I started shaking, and felt truly awful.

At emergency care they kept me in for a few hours, gave me reflux medication (no idea why?!) and did a few standard blood tests. This happened twice. The second time they discharged me at 4.30am . . .

Searching for the cause of symptoms

During this time I knew I had to take matters into my own hands. I still had no idea what was wrong, so I threw money at the situation. I went up the Shard in London Bridge (sadly only to the 4th floor - I had half hoped and half been terrified I would be up in the clouds!) to see a neurologist privately that I had previously seen on the NHS. He did a neurological examination and said I was fine.

Then I spent money on a private rheumatologist, who said it was just my fibromyalgia but actually didn't seem too convinced by that either. I traipsed around London, feeling awful, asking every doctor I was seeing for my other conditions what they thought. I drew a blank at all of them.

A tentative MCAS diagnosis

I've lost count of how many months later, in fact I think it was over a year after my symptoms began, but I had an appointment with a neuro-gastroenterologist for some gut issues. The doctor took a really detailed history, and then asked me to 'draw' on my skin. Basically use my finger nail to do a line along my arm. He did the same. His line disappeared pretty quickly, yet mine stayed there for around 20 minutes. I learnt that I had dermographism, a common symptom with MCAS.

He then mentioned MCAS - mast cell activation syndrome, and suggested that I follow a low histamine diet and take antihistamines. While finally I had a suggestion of the issue, he did then discharge me, which in hindsight shouldn't have happened.

And then searching for a MCAS doctor

Armed with a tentative diagnosis, I mentioned it to my cardiologist for POTS at my routine appointment. He was brilliant, agreeing he thought it was likely the cause of my symptoms and suggesting specialist doctors to see.

Next came the tricky bit, and I won't give you the full version because we would be here all day! As many with MCAS will know, we face two difficulties in our journey to a mast cell activation diagnosis and treatment. The first is the lack of doctors with specialist knowledge, and the second is doctors who say it doesn't exist. I encountered both issues, and still do to this day.

Safe to say, I went around the houses until I was formally diagnosed through some very expensive blood and urine tests. As time went on, I also started to experience bladder issues, of interstitial cystitis, and a biopsy has shown increased numbers of mast cells in my bladder. I had no idea that my pesky mast cells could cause issues all over my body!

Over time I have learnt that POTS, hEDS and mast cell activation syndrome are known to have an association, even if why that is has yet to be fully understood. It's also the case that bladder issues, and interstitial cystitis, are often found to be associated with MCAS. As with other health issues, it often feels as though our bodies are a puzzle of tiny pieces and we have to link them all up, or try to, in order to find the cause of symptoms in order to access the most appropriate treatment.

MCAS treatment options

Through my journey to a mast cell activation syndrome diagnosis I have tried many different treatment options. Personally I have a found a combination of factors help me manage my MCAS, rather than one thing being the key to it all, and those detailed below are what best work for me.

While these are the treatments and lifestyle modifications that help me, it is really important to follow your doctor's advice on this, and this post is for informational purposes only.

Medication

I take prescribed medication of anti-histamines and mast cell stabilisers. Your doctor will guide you on the best options for your particular circumstances.

Low histamine diet

On the recommendation of my doctor, and with guidance from a dietician, I follow a low histamine diet. Personally I follow the SIGHI list for histamine and that's the list that I also follow for the low histamine recipes that I share here on the blog!

Since switching to the diet my symptoms have lessened and I was also able to identify foods that were a particular problem for me, like certain vinegars and too much coffee. If you are new to this diet, then my post 10 tips for starting a low histamine diet should be useful.

Some low histamine cookbooks:

Low histamine sweet treats recipe ebook

Low histamine breakfast ideas ebook

Histamine Intolerance Cookbook

The 4 phase histamine reset plan

Histamine Intolerance: The Cookbook

*note - not all of these cookbooks follow the SIGHI list.

If you would like to know when new low histamine recipes are posted follow my Instagram @lowhistaminekitchen!

Lifestyle

The most important lifestyle change for me is to try and lower my stress levels - anxiety and MCAS are definitely not a good combo! Everyone has different ways to mange stress, for me it can be using meditation apps such as Calm, yoga (yes, I know, everyone suggests meditation and yoga, but it does help me!) and even just taking some time to watch a good show without doing work or housework or anything else.

Exercise

Exercise and MCAS can be tricky. I want to stay fit and healthy overall, and exercise is really helpful for my migraine and POTS. Yet for some people it can cause mast cell activation.

Personally I am usually OK as long as I don't exercise when it is hot - so the middle of the day in the summer is a no-go. Earlier in the morning or late evening is usually better. If I can't get out, then some time using my pedal exerciser at home is really good (and you can watch TV at the same time!).

MCAS resources

Reading up on my condition was really helpful to me, and I found it reassuring to know that my symptoms were typical of MCAS. It was also helpful to know that it wasn't just me in this position. These are the resources that I find most useful:

Website

Mast Cell Action

Books

Dr Afrin; Never bet against occam: mast cell activation disease and the modern epidemics of chronic illness and medical complexity

Mast Cells United: a holistic approach to mast cell activation syndrome

Mast cell friendly and low histamine cooking: diet guidance and recipe collection

And of course, the best resource of all is a knowledgeable doctor! It can take a while to find one, but I definitely recommend having a good google or reaching out on social media to ask for suggestions of someone in your area to consult with.

Hope that you found this post useful - if you would like to follow along for more posts like this on MCAS I'm active on Instagram, Facebook and Twitter!

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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.