Life, EDS, MCAS & Medical Update - More on Why Digestion Isn't Just About Food

Over the last few blog posts I have hinted at changes and progress in my own health. Today’s post is going to explain - in detail - what has been happening.

Before I can describe the recent weeks, I need to go backwards a little bit, telling you what has been going on with my health for the last year. For those who know my health history (more here) you will be aware that I have three diagnosed conditions (there’s more, but let’s keep it simple!!) which I manage on a daily basis: Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS).

The latter two diagnoses are complications that emerge out of the former: EDS is a connective tissue disorder which disrupts the way your body makes collagen, leaving your skin too stretchy, your joints hypermobile and, in certain cases, creating nervous system dysregulation and immune issues because of the way your nerves and immune cells sit within the extracellular matrix of your connective tissue.

For the most part, all three of these issues are something that I have, after many years of alarming and life-threatening illness, found a way to manage and deal with. Finding strategies, approaches to life/diet/exercise/socialisation which support my biochemistry, whilst acknowledging my innate sensitivity, is what allows me to enjoy a full life and run my own business.

But EDS is a condition which creates consequences. If you’ve been following my blog for any length of time you will be aware that I have been undergoing extensive dental work in recent years. The purpose of this was to reshape my jaw, relieving the pressure on my vagus nerve (in the back of my neck) so I could get rid of certain symptoms which still persisted. These symptoms were both neurological and hormonal in nature, as well as gastrointestinal: an inability to gain weight (I was still very underweight approximately 4 years ago), lack of menstrual cycle, frequent dizziness and constant stress (high cortisol) flowing through my system.

My initial experience with attempting resolve the compression of my vagus nerve actually occurred many years ago - with disastrous consequences. The devices used (basically plastic contraptions in my mouth) caused so much neurological distress that I was unable to walk in a straight line and I collapsed in the middle of the street on several occasions. The conclusion at that time was that I was not quite strong enough to go through the process necessary.

Second time around and we tried a slightly different approach (a different type of mouthpiece) - and within the first few months of treatment (not without its stresses, but nowhere near as bad as the first attempt) my body had changed. I had gained weight (a miracle), I had no dizziness, my system had calmed a little (though not totally) and within 6 months I regained a menstrual cycle after 13 years without. It was literally like someone relieved the compression on my vagus nerve and stress fell away, with life flooding back into my body.

However, what I had not really taken into account was that I had entered into a many-years-long process in which I would go from good, to awful again - relatively quickly.

After an initial honeymoon period of relief, I now realise that the strain of having mouthpieces and expansion devices in your body 24-7 is actually one of the most stressful things you can do. I had a tooth removed from the roof of my mouth, many, many different metal contraptions, screws, plates, dentures and finally fixed wires on my top set of teeth. We did major work - creating two gaps in my upper jaw as the space opened up and my jaw moved forwards in my head.

We made the decision to remove all of the metalwork, but then it transpired that our choice had been premature, there was little stability to my jaw … and so I had to go through the whole process again, only this time a device was used alongside which I wore cricket helmet each night with elastics attached to the wire frame at the front and then onto the mouthpiece - attempting to use sheer force to pull my upper jaw forwards.

Through all of this I just about kept it together - though I gained a lot of inflammatory/stress weight and became desperate for sugar, REALLY prone to bacterial overgrowth and very challenged with cranial stability, structural integrity (I kept spraining ankles and knee joints). My mast cell (basically immune over-activity) conditions flared.

The worst part came when I had fixed braces put on top and bottom teeth. In anyone this is a stress. In a 32 year old female who runs a business where she talks to people all day, every day, this was impactful on so many levels. However, the biggest impact was on my gut.

Most of my distressing EDS and MCAS symptoms have centred in my gut. This whole journey began with a ruptured oesophagus at 17 - and ever since then my gut has been the nexus of most of my issues.

Add braces onto my teeth and I suddenly was unable to chew properly and every meal was followed by the rigmarole of flossing, dental sticks and water picks in an attempt to clean my teeth. Obviously eating out became impossible - so long clinic days became days of fasting.

The inability to chew meant that I was swallowing foods that weren’t broken down enough. The length of time without eating screwed up my appetite and hormones. And - most importantly - in a body that is inherently flexible (that is the nature of connective tissue disorders) my jaw and teeth were being held rigid.

The stress that this placed on my nervous system was enormous - and to be honest, almost inexplicable. I could feel the daily tension, I could feel the inflammation being created as a result - and I watched my body change and become more and more uncomfortable as time passed. I knew, instinctively, that things didn’t feel right - but the impact seemed absolutely disproportionate to the fact I just had braces on my teeth.

Worst of all, I was starting to feel sick upon eating again. This a feature of the mast-cell-driven reactivity that is prevalent in my oesophagus (particularly around the location of the historic rupture). When my nervous system is stressed, my immune system’s attention and aggravation is heightened. The sickness I experience upon eating has waxed and waned since the time of the oesophageal rupture, but it always tracks to my nervous system stress levels. Mostly, it had vanished… but at its worst this symptom leads me to violently regurgitate after eating (or sometimes even drinking fluids).

Since the beginning of July last year I have struggled overwhelmingly to eat, to digest, to chew food, to keep food down… and to maintain my sanity (and also reputation) throughout this. I have friends with whom I have never shared meals because they met me after my braces were fitted. For some people, I am sure there must have been some suspicion as to whether I was actually suffering from some kind of eating disorder, which is what was suspected when I first became this sick all the way back in 2003. It is hard to explain - but eating, particularly in that state of stress, just hurts.

But then I had an operation in April this year (for something unrelated to my teeth) and this required a general anaesthetic. In my nervous system, drugs are a funny thing - some I tolerate, some I don’t. This anaesthetic, with the muscle relaxants and adrenaline they also pumped into my system, really messed me up.

From 11 April 2018 until 25 July 2018 I was sick after every single meal. This meant I couldn’t go out and could barely eat with people. I had one meal out with someone and whilst I think I probably covered it up well, it was super stressful and I was just relieved I made it through. In the midst of all of this messing around with food I actually gained weight, became more inflamed - and I have exercised throughout but no muscle was built. It was the perfect example of how stress affects a body.

Probably, on the surface, you didn’t notice. If you’re a client reading this and we met during this time you probably had no idea (unless I told you - and I wasn’t being secretive about it). So why share this - why be so open on my own blog about something so niche and weird and reflective of ill health?

It’s simple really. My body is an extreme - but it’s an example. It shows you how vital your nervous system is to the entire functioning of the human body. It should demonstrate how stress can create a flare of all immune activity and reactivity. Sensitivities can rise exponentially, and the strangest physical symptoms can result.

But it’s also important to explain that I probably didn’t look ‘ill’ because I knew exactly what was happening, and why. This is the reason I take so much time to explain health issues to my clients - because understanding your body is at least two thirds of the battle towards helping it. Once you know why a weird symptom is occurring you can feel less fearful.

I have always just had to trust that this sickness was due to the dental work - and that all the weird food avoidance, restriction and fear that was being set up would evaporate when the braces came off.

But the journey to brace freedom was tricky. I had thought it would be in around April this year. Then in June, then the beginning of July. Instead, all I did was add more strain through putting in more elastics (trying to pull teeth in specific directions). Eventually I stopped sleeping properly and everything just got so much worse. In the end I fought my dentist - everything inside me was just done. It was ‘too soon’ in his opinion - but for the month of movement he wanted to pursue (possibly gaining about a millimetre) he agreed that my sanity was more important.

The night the braces came off I didn’t want to eat. I was utterly petrified. But I did - sticking to relatively ‘safe’ foods (just chicken and vegetables). I had one minor regurgitation… and then nothing.

Sceptical, I had to go all the way back up to London the following day to have a special retainer mouthpiece made (I’m a long way from finished the dental work, by the way - this is just getting the braces out!). The mouthpiece fitting went OK - and that night… nothing. Absolutely nothing. No regurgitations, no sickness. I could hardly believe it.

The next day I went to Italy on a trip that had been planned when I thought I’d have been free of the braces for months prior to it. As it had loomed closer I had known I couldn’t go whilst still being sick…

And whilst I was very careful to avoid gluten and dairy whilst in Italy… I ate meals out every night… with my family (EATING WITH OTHER PEOPLE!!!)… and I drank alcohol… and I was ABSOLUTELY FINE. Only on one night did I have a slight indigestion - but it may have been due to the fact that I’d eaten a whole pile of RAW BEEF TARTARE.

I mean… Really? Me???

Yes - me. Eating normally again. Digesting food. No sickness. Immune system calming by the second - within literally moments of having my braces taken off.

Why You Might Care About My Story

My story should show you - whoever you are reading this - that eating, digestion and the health of the human body isn’t just about food and the diet that you consume.

It might also help you to understand that in my distressed and desperate state I was being drawn to eat sugary foods, chocolate, ice cream, dairy, sauces that were too spicy and foods that I just don’t deal well with (anyway, ever). I wanted cake, for heaven’s sake - proper, gluten-based cake. And that has ALWAYS made me ill. And during all of this I couldn’t always own that I was being drawn to consume foods that ‘hurt’ - but it was like in a space of distress I sought foods that were chemically able to give me a dopamine hit to make me feel better.

Since the brace removal I haven’t even been down the chocolate aisle in my local Waitrose - and I’ve not even looked at ice cream, despite the heat.

Everything I have discussed above shows you how impactful the nervous system is on the way your body can assimilate food.

This whole experience has provided immense validation to what I have known for a long time - and the core tenet around which I base my practice. Whilst the focus and the zeitgeist at the moment is on gut health and how central that is to wellbeing, this is at the expense of recognising something more important - the fact that the gut is controlled by the nervous system.

The relationship isn’t one-way, it’s bidirectional. Yes, what’s inside the gut matters (and can affect mental health and nervous system aggravation). But stress - wherever that comes from - is MASSIVELY influential and can completely change gut function, microbiome, food preferences and just about everything about how you work as a human being.

Everything has changed since my nervous system and immune system have calmed down. My skin has cleared up, my bloating is going, my weight is dropping and I’m building muscle. I might even get into debt this month with the amount of people I’ve promised to take out to dinner!

Now, as said above, mine is an extreme example - and the alarming sickness stems from my peculiar EDS, MCAS, POTS combination and a gastrointestinal history that I wouldn’t wish on anyone.

But my example is testament to the way that simply aggravating the nervous system energy can utterly and completely disrupt everything about the way the human body and mind can work.

This is why, when I work with clients, I’m hunting for what’s blocking their systems from communicating - where are the stressors that they are dealing with and how can we eliminate them? This is what systems biology SHOULD be about - not just looking at the health of each system but also looking at how they are communicating and the neurological energy which innervates their functioning.

Sometimes (as in my case) you cannot remove the blocks to communication and you have to just wait out the process. But most of the time - when you focus on systems biology and root cause resolution - there are steps you can take to remove the stressors to your nervous system, and in so doing improve the health of all of your systems. This is what I do with my clients - and what I am finally relieved to be able to have done for myself.