At least that’s what I was told!
Mast Cell Activation Syndrome (MCAS) is a condition not well understood in this country (UK). Many people will ask “Do I have MCAS (mast cell activation syndrome)”. If the tests come back clear, you’ll be told that there is nothing wrong with you, “You’re stressed”, “It’s all in your head” or “Take some antidepressants and you’ll be fine”.
This is not a post that I had planned to write, and I thought, should I do it or not? However, I think many people that I’ve spoken to, who are suffering from this condition, will read this and agree that it is a traumatising experience; not just trying to get help with this condition, but also to find someone who really understands. Someone who can answer the question – Do I have MCAS?
But the MCAS tests were all clear?
When symptoms come on, and tests show nothing, you really are experiencing it. If you say you can’t eat a food because you’re reacting, you are. If you go into a shop and it’s a different temperature and you start to react, it’s true, or maybe someone has perfume on, which is fine for normal people, but to some MCAS sufferers it’s like they have used the whole bottle and you have a reaction to it; you’re not lying.
Wi-fi, EMFs, stress, mould, exercise, vibration or even too excited. People are reacting to everything and they don’t know why. Your family are trying to be supportive, but they don’t always understand.
You close yourself off from everyone as you know they’re thinking you’re crazy. After so many doctors putting you down or don’t know what to do with you, you withdraw from everyone, and start questioning yourself; maybe they’re right. You become a prisoner in your own home as there is nowhere safe to go, in case you react.
I spent thousands on different practitioners, giving me hope that they knew what they were doing and that they knew what was wrong. I had a team of doctors, probably one under each department in the hospital at one point and not one of them came up with MCAS. It was me who diagnosed myself and even when I kept telling them, I still was not believed, one saying how rare MCAS is. Well, that’s wrong, it’s just that doctors have not been educated about it.
If it doesn’t come under their umbrella of conditions, then you are cast to one side; there are hundreds of MCAS people out there.
It wasn’t just doctors. I tried anyone and everyone, but if they did anything, they just made me worse. Trying to find a doctor who understood MCAS wasn’t easy. There aren’t many knowledgeable in the condition and the good ones who are, their books are shut.
I was begging to find out – Do I have MCAS?
I was begging and begging for months to be seen, trying so many people. I managed to get on my consultant’s list but not on her MCAS one, as that was full, but on her menopause list. At 36 my ovaries had stopped working, and my body was shutting down.
I was losing so much weight and only tolerating a couple of foods because of this condition. I was pleased to get an appointment but it wasn’t for 7 months. I couldn’t wait that long. I kept begging and then an appointment came up in August, still too far away, it was only March. Then after having more bad experiences, I wrote two emails to two doctors one weekend, one being my now consultant, explaining what was happening to me, I also got to the point I couldn’t tolerate my 2 safe foods.
And finally…
Then after the weekend, Monday morning, I called one of the doctors on the off chance and she answered the phone and said she had just read my email and was responding. I remember her saying she suffers with the condition but would never have been treated like I had as she was a doctor.
SHE DIAGNOSED ME with MCAS and I was right. After all this time something was going my way. After getting off the phone with her, my phone rang. It was my consultant’s secretary, a cancellation had come up in 2 hours. I took it, and again, SHE DIAGNOSED ME with MCAS. She put me on all the recommended medication and suggested tests. For once someone who understood, I was being listened to. Finally, the question, do I have MCAS was answered.
The relief I felt was indescribable. I was finally getting some answers, but this was just the start. I thought that once I was on this medication that’s it, I would be fine. How wrong I was. There was much more to it, finding medications that I could tolerate. Yes, I got my safe foods back, but I was still so reactive to everything else. I was living in a place with mould, I was still very sick.
I had been trying to find a functional medicine practitioner, but no one wanted to touch me, as I was too sick. Then luckily, I spoke with Caroline from “Eat Drink Live Well“. She was willing to take me on. I was so pleased but also so terrified at the same time. She said she could help, but I had no trust in anyone at this point, as everyone else so far had made me worse.
We did tests which confirmed I had mould illness as well as many other things. She wanted me on lots of supplements, but I was terrified. After all the other practitioners giving me supplements that I reacted so badly to, what will make hers any different? I had to try though as I had no other choice.
Some luckily were okay, but others not. Patients with MCAS need to understand that just because you reacted to other supplements, does not mean that you’re going to react to all, and if you’re reacting to something now, it doesn’t necessarily mean that you will further down the line, as your body heals, the inflammation will calm and you will be able to tolerate more. Yes, you may react to some and what you can tolerate doesn’t mean someone else will.
Everyone is an individual in this and on their own journey but ultimately they want an answer to “do I have MCAS?”. No one can be forced, and they can only go at a pace that’s safe for them.
From speaking with clients, by the time they see me, they have often already been around everyone and are in despair. They don’t know who to trust, and what they should spend their money on, as they have already spent so much. No one can be pushed with this condition, and you have to do what is right for you.
If something doesn’t feel right, don’t do it. You need to find the right people to support and work for you. There are many practitioners out there, claiming they can help. Make sure that when trying someone new, they have good reviews, have been recommended or when you speak with them they know what they are talking about.
If someone is telling you to push through your symptoms when trying a new supplement, get rid of them. They don’t know what they’re talking about. If they don’t believe you, you don’t need them. You’re a puzzle and it’s about trying to work out what bit goes first to help you take the right steps on the road to recovery.
You can have all the right people behind you, supporting you, but it’s you who does it.
You can have all the right people behind you, supporting you, but it’s you who does it. If you are in the mindset that it won’t work, or the supplements you are going to take, you will react to, then you will react. Being on all the medication, supplements, getting the mould out of my system and having the right people supporting me, I was still reacting. I had to work on my brain.
When your body has been under chronic stress for a period of time it won’t just calm down, it’s in hyperdrive. You’re stuck in fight or flight, your brain is still perceiving everything as a danger. Yes, all the tests are very important, but so is calming your nervous system down.
This took me a while to get my head around. It was so hard. I didn’t believe that by thought alone, I was causing so many problems. There are a few brain retraining programs you can try. I tried Gupta, but for me, it just didn’t work. It was too hard when I was so sick.
Hypnotherapy helped me find a place of calm, where I could help teach my body to relax again and feel safe, to try and break some of those beliefs formed from being ill. When you have these inflammatory symptoms, you become distressed by them and the stress causes anxiety that causes more inflammation in the localised areas where you’re more sensitive to it.
So that is why, for example, gut inflammation is very common. A lot of people cut out foods because they associate the inflammation with whatever they were eating at the time they were inflamed and then what happens is when they eat that food in the future, the anxiety of what it might do to them causes a flare and the inflammation is blamed on the food rather than the anxiety it causes.
When symptoms would come on, instead of panicking, which only makes things worse, I’d use hypnotherapy every day, because it will help with the neurological stimulants that create the histamine response helping to reduce them. This will help to put your body back into balance of a state of calm, so you’re not in fight or flight and you are in rest and digest.
It takes time and there will be bumps in the road, putting you backwards sometimes, feeling like you are back to square one. You’re not, and over time you will feel better and better. Don’t give up there is always hope!
This information is only a guide, and I can only go by my own personal experiences.
Well done Emily!! I absolutely relate to it. I would not be able to explain it better. Healing is possible. thanks for your support!