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.
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.
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!
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 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!).
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:
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.
Thanks for sharing your journey, practical tips and more. Really helpful for those who are yet undiagnosed, confused, and need resources.
Really hope it is helpful for people on their MCAS diagnosis journey.
Claire - thank you for the lesson on MCAS! I hadn't heard of it before and I appreciate learning more about it. I'm so sorry that it took so much for you to get diagnosed though! I know it can be a nightmare(I went through three neurologists and two psychiatrists to get my FND diagnosis), and I'm so sorry it took so long!!
I use Calm myself and am also big on meditation and stress management. Keep sharing your story it's so important that people not give up on their diagnosis search!
Thx so much for sharing Alison! Dya know YOU helped me self-diagnose MCAS after what, 5-10 years of horrible gut issues. In the US with Medicare (on disability with FM (fibromyalgia) for 20+ yrs) and 2ndary insurance from prior employer, I still had no help. I realized based on your info my symptoms were the same. Followed a low histamine diet (SIGHI) and for the 1st time in many years didn't need tissues while eating and didn't have to interrupt to run to the bathroom either! Of course my GI Dr (one of those who expects his feet kissed and I should genuflect 🙄) dismissed me and my Dx automatically. But, I said, the diet works! And you've found no other Dx that works! . He pretty much threw me out of his office. Good riddance to him I say! So US medicine isn't any better. However, now Everyone seems to have FM... Is it now acceptable . That took me 2 yrs, tons of $$$ and many "it's in your head, go see a shrink" diagnoses before 1 Dr knew what it was. Hmph. Well get there with MCAS too.
Meanwhile, keep up the good work, we really do appreciate all the wonderful recipes, info, insights and advice you help us with 🥰🥰🥰
Hi Marlene, I'm so sorry that your doctors aren't being receptive to your symptoms or being active in trying to test and diagnose. I can only suggest doing some research and trying to find a MCAS / histamine intolerance knowledgeable doctor. I think it would be important for you to have proper medical guidance if it is possible for you to access it. I'm not sure how the US system works as I'm in the UK.
I'm so happy that my recipes and info is helpful, and wish you all the best going forward 🙂
Hi Alison, I'm sorry you had such a long road to the diagnosis of FND - it really does seem as though so many of us spend a lot of time and money on getting to the right doctor doesn't it.
Shruti Chopra says
This line made me chuckle! "The first is the lack of doctors with specialist knowledge, and the second is doctors who say it doesn’t exist. " - I faced exactly that, but thankfully, I just met two doctors to get my diagnosis so it didn't pinch my pocket the way it did yours - I didn't have to do the crazy runaround! But yeah I do wish you had gone to the top of the Shard 😀
Just glad you eventually got your diagnosis 🙂
I don't know how you managed a diagnosis so fast!! I ran around all over the place for a long time. So good you didn't have to go through that and have the support you need.
And I'm not sure whether I got lucky not going to the top of the Shard, or whether I missed out . . . it's SOOOO high! 🙂
Jason Herterich says
It's sad that you experienced so many barriers to receiving a diagnosis. It makes me think about all the other people out there who likely have MCAS but, due to their bad luck of doctor, will never receive answers.
I think there may be thousands of us to be honest. It does seem to be getting more recognition so we can only hope that doctors start to get properly educated on how to test, diagnose and treat us.
Cassie Creley | Starlight Through The Storm says
My neurologist recently started treating me for suspected mast cell activation syndrome, something I’ve been wondering if I’ve had for a long time. This information is so helpful! I’m about to start doing some further research into recipes, so looking forward to checking yours out!
I hope you can access the tests and support you need. Perhaps ask for a referral to an immunologist or allergist that specialises in the condition? So glad the information in the post is helpful, and that you enjoy the recipes!
Rosa Sanchez says
Did you find it as frustrating as I that centers that take care of one diagnosis don’t refer you out or make it part of the plan to have the pcp follow up. I can’t understand why when celiac has a higher incidence in Eds and mcas then why not refer. Same with me, once I found out about the Eds it was me researching and figuring out who I needed to see to rule out the pots and mcas after the Eds dx.
Hi Rosa, yes it can be frustrating for sure. I'm not sure how the system works in the US but I have definitely had to do a lot of research to find the right doctors. Hope that you get some answers around your symptoms.
Rachael Tomlinson says
Oh my word, what a nightmare Claire and a very expensive one at that it seems.
It is so wrong that we still have to pay to get anything diagnosed properly.
Totally agree, and some people aren't fortunate enough to be able to afford to pay for tests, and then access the treatment that they need.