WHAT IS MAST CELL ACTIVATION DISORDER/SYNDROME (MCAD/MCAS)... REALLY?
Amongst a handful of diagnoses, I have one which affects my life much more than others. It’s not the foundational condition, which for me is the connective tissue disorder, Ehlers Danlos Syndrome (EDS), which creates excess tissue and joint laxity, but is, instead, one of conditions that often goes alongside EDS.
It is, as the title suggests, Mast Cell Activation Disorder. And this condition, along with its close cousin, Mast Cell Activation Syndrome, seems to be cropping up more and more in clinical practice and in the wider world. There are many theories as to why there is such an increase, and this article will not get into any of those arguments.
Instead, I want to use today’s article to explain what Mast Cell Activation Disorder or Syndrome actually is - and what you can do if you suffer from this condition.
WHAT IS MCAS or MCAD - and is there a difference?
There is a difference between MCAS and MCAD - with MCAS being just one form of mast cell conditions. Mast cells are literally holding cells - the houses of chemicals which are deployed in the fighting of infection, disease, toxicity etc. Mast cells are part of our front line defense and they circulate until the time at which they bind to the extracellular matrix - and there are a host of studies into what determines where mast cells bind, what collagen types they will and won’t bind to and what governs their degranulation within their binding sites. And then - when activated or ‘degranulated’ they will release their contents into the surrounding tissue.
(A note: the above-linked studies aren’t reflective of the body of literature, I’m fully aware of that… it’s just an insight into the wealth of information out there about mast cells - and how utterly complex their behaviour is).
Their contents are inflammatory: chemicals, known as ‘mediators’, which essentially trigger allergic and immune reactions. One of the most-known mediators held by mast cells is histamine - and the reaction that you get when bitten by a mosquito or dealing with hayfever is a situation where high levels of histamine (released from mast cells) is creating inflammation either around the site of a bite or in the eyes/nasal passages as an attempt to clear out pollens.
A mast cell disorder, therefore, is when the mast cells in someone’s body inappropriately and excessively release their inflammatory contents.
As you will have seen in the studies above, the mechanism of binding, proliferation and degranulation has been delineated and extensively explored - and we have gleaned many insights into this process, though there’s still more to learn. What is still relatively poorly understood is why this whole system goes wrong - as in MCAD or MCAS conditions.
In those with connective tissue disorders, however, there is a clearer idea as to why this mast cell regulatory system is affected. Quite simply, mast cells reside in connective tissue. Excess laxity and improperly formed connective tissue is a recipe for unstable mast cells, or having too many mast cells in certain areas. Additionally, those with connective tissue disorders tend to have an upregulated protective response due to the inherent insecurity and unsafety in the body. This can lead to connective tissue patients genetically having bone marrow which just produces too many mast cells - i.e. too many potentially inflammatory time bombs.
The difference between MCAS and MCAD tends to be founded on a matter of semantics - if you have too many mast cells and/or too many in the wrong place this is MCAD (and includes excess bone marrow production). If you have mast cells which are too easily degranulated this is the ‘syndrome’ of MCAS - because it implies a degree of hypersensitivity to cause excess degranulation, rather than there being anything inherently flawed in the production or placement of mast cells.
In truth, I suspect that many people even within the medical community do not make real distinctions here, using these terms interchangeably.
HOW ARE YOU DIAGNOSED WITH MCAS?
The reason for a potential lack of proper distinction is because testing for mast cells is tricky. Tissue biopsies and bone marrow samples are required to truly identify whether too many mast cells are being made or too many proliferate in a certain tissue (most commonly, the digestive tract or bladder). These are invasive operations which do little except provide a formal diagnosis.
Diagnosis, therefore, tends to default to MCAS (the syndrome) because the true cause of why a patient’s mast cells are regularly degranulating has not been fully explored.
Additionally, such diagnoses tend to be clinical and based on case histories, rather than testing. The reason for this is that mast cells are finicky and unpredictable - the only thing you can really test for is the inflammatory chemicals that they contain. Isolating these mediators from blood samples is easy, that’s true - but it’s less easy to time blood draws to the moment a mast cell patient is experiencing reactivity. It is also not true that mast cells degranulate everywhere simultaneously - so if a localised reaction is taking place there is every likelihood that the chemical mediators are diluted in the circulating bloodstream - making it look as if nothing is happening.
This lack of ability to effectively diagnose MCAS means that some people dismiss it as a nonsense diagnosis - suggesting that the reactivity is a form of psychosomatic hyper-response.
It may surprise you to hear me say this - but this isn’t entirely inaccurate. The mind can be highly involved in MCAS conditions. However, talk to anyone who deals with mast cell degranulation conditions and they will disagree with the view that their diagnosis is unreal or psychosomatic - and they are right… just because the brain is involved, does NOT mean that this condition is caused by psychology.
SO WHY ASK WHAT IS MCAD/MCAS… REALLY?
I actually understand the perception that MCAS as a bit of a ‘nonsense’ diagnosis - but NOT because it doesn’t exist - just that the diagnosis is a fairly useless descriptor of symptoms rather than an actual diagnosis. MCAS just explains the state that the body is in - and it goes no way to explaining why.
When you are looking at systemic conditions such as this, it is very important to understand that there isn’t just one bodily system at play. This is not a Cancer of a specific tissue, nor is it an isolated infection. MCAS is characterised by uncontrolled and inappropriate immune system responses based on the ease of degranulation of mast cells. This means that the immune system, the structural extracellular matrix, protein signalling - and most importantly, the nervous system - are ALL involved.
And when you are looking at inappropriate inflammatory responses from the human body which are systemic in nature, in order to resolve the condition you have to understand why the body has got the wrong message/idea about something to cause it to have have such inappropriate responses.
Here is where MCAS and MCAD diagnoses really have distinction. The former is an ease of degranulation - and I have found in clinical practice that this is largely mediated on stress states, hyperactive nervous systems, hypersensitive viscera and overwhelmed bodies which are fighting anything and everything due to a misplaced sense of ever-present threat and/or excess internal/external toxicity burdens.
MCAD is a much more structure-based condition in which the location and quantity of mast cells are determined by something within a patient’s genetics (as with connective tissue disorders) or history - or both.
Despite this distinction, this does NOT mean either of the following are true:
Everyone with a connective tissue disorder has MCAD. This is just not true, most actually have MCAS and their connective tissue issues are responsible for their hypersensitive state and hyper-alert and overactive immune system, but NOT for improper placement or production of mast cells
Anyone with MCAD cannot do anything about their degranulation issues and will have a harder time. Again, this is not true. Even with excess distribution of mast cells, degranulation is still a function mediated by stress responses. It’s harder to resolve, certainly, but there are still things you can do to minimise degranulation events (in terms of both severity and frequency)
How to Treat MCAS
So, if Mast Cell Activation Syndrome is mediated upon the stress-response of the human body, there is actually a relatively simple solution to resolve these issues: reduce stressors.
Of course, this is so much easier said than done. It requires dietary choices which are personalised but play close attention to minimising immune aggravation. It requires lifestyle choices which nourish the nervous system - plenty of balance, rest, play, socialisation, fulfilment, passion, drive and living a full existence. It requires ensuring the body is not exposed to too much toxicity - from the environment, from chemicals, from foods, moulds, water, from toxic people and relationships.
And it also often involves deep inner work on reframing self-perception and perspectives on life as an attempt to harmonise your relationship to the world around you. Using mindset techniques to alter whether you see the world around you as a threat or as a safe place is fundamental. If your nervous system senses threat at any level then all immune cells (including mast cells) will be placed on guard, on high alert. From this position, ease of degranulation is a foregone conclusion.
Combining specificity about the external environment and the way you take food and experiences in with an approach to life which is not founded on tension, stress and fear is a tough ask - but it is the way to reprogram the neurological-immune response that is MCAS.
All of the above works. It is not foolproof - but it is a strategy for life which revolves around being in tune with your body and the stress loads you are placed under. It’s actually a really healthy way to live generally, and probably what everyone is aspiring to. For those with MCAS, this aspiration becomes a necessity, not a choice.
How to Treat MCAD
I have MCAD. Ironically, this is not just based on my connective tissue disorder. I have a proliferation of mast cells throughout my tissues - most notably in my GI tract. Whilst this may (in part) be genetic (and no, I have not had a bone marrow biopsy to figure out how many mast cells I make), this is ALSO based on the experiences I have had - including some pretty terrifying gastrointestinal incidents which have ‘healed’ in such a way that, by means of self-protection, my tissues in those areas have a phenomenally high amount of mast cells.
And when you look deeper into that, this is a really ‘sensible’ response from my body. Wherever the body senses tissue weakness (for me, throughout the GI tract due to BOTH connective tissue weakness AND past injuries) it will place more sentries, guards and attacking forces. Understanding this is massively helpful to my psychology because I know any reactivity I have is actually my body trying to keep me safe.
However, there are STILL things that I can do. All of the above tools for MCAS still apply in MCAD. My degranulation can be really well controlled by dietary care, nervous system attention and knowing my body, my triggers and my parameters.
When I add confounding variables into the situation - such as is currently the case with the extensive dental work I am going through - I have literally no hope of controlling my mast cell degranulation. And I know, because I’ve tried. Everything that I did before to bring my body back from complete dysregulation, dysautonomia, sickness etc. is not quite having the same effect.
I’m OK (just!) - but the point is that any additional stressor - in this case to my nervous system (through the tension and pulling of dental contraptions) and immune system (through the placement of a set of foreign objects in my mouth) - will place a system that is predisposed to degranulation into a much more precarious place.
And though I practice nutritional and functional medicine - MCAD for me has been a window into how important the “other stuff” is when it comes to regulating reactivity. Excessively controlling dietary intake is not the solution here - everything else about the nervous system’s state of stress, anxiety, paranoia and high-alert is.
It is my opinion that this is why conventional medicine finds mast cell conditions so difficult to treat. They will minimise the symptoms utilising mast cell stabilisers, but this isn’t solving the underlying condition which gave rise to the problem in the first place.
From both personal and professional experience, MCAS and MCAD are - really - conditions in which only an holistic approach to total-body-system health can help. When the body is in a situation where it is having an inappropriate response to the world around it you HAVE to use multiple strategies which reprogram and recalibrate that response. A small part of that is dealing with toxins, allergens and aggravators externally. A far larger part of that is building a relationship of self-awareness such that you can manipulate, regulate and work with your nervous and immune systems to change that inappropriate responsiveness.
It’s not easy, that is true. But it is possible. And the precise ‘how’ is different for everyone because it involves working with your personal story and understanding where your specific inappropriate-response state begins within you.
If you’d like my help to tackle your mast cell condition, please do reach out to me and I’ll be delighted to help you through this difficult, yet very rewarding, process.