Recently in my clinic I have had a wave of interest in discussing the role of nutrition in Ehlers-Danlos Syndrome (EDS) and the trifecta that often presents itself as EDS, Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS).
As one of the few practitioners in the world with all three of these conditions, it is perhaps unsurprising that my guidance is regularly sought in this arena. However, I realised that this latest spate of interest was sparked by a mention in a Facebook forum (this happens quite a bit) – and someone then directed me to a fabulous video advertising a campaign to study EDS and nutrition in more depth.
I immediately shared this video on my Facebook page – not because I wanted my friends and family to give money to the cause, but because the experiences shared by some of the patients in the video mirrored my own so precisely.
The video (it’s short – go watch it) also has a beautiful reflection from a young woman on how hard it is to explain the more extreme incidences of EDS to those who ask us what we go through. She’s right… it’s difficult to explain without giving a short essay! And this means that even working in the industry I struggle to describe what physically happened to me and why.
HOW THE EDS WORLD HAS CHANGED
I wasn’t helped in my own journey by the fact that my EDS/POTS/MCAS diagnoses came a long time after I first became truly unwell. The mis-diagnoses went on for far longer – approximately 8 years – than the relatively short time since I finally understood my health history through the lens of this trifecta of issues.
It was only 2013 when I received these diagnoses and I forayed briefly into social media in an attempt to understand myself. At that time, whilst there were similarities, no-one seemed to have experienced what I had – and the availability of help in the UK was slim-to-non-existent. My consultants tried drugs, which were awful. They lightly recommended low histamine diets, which were useless. They prescribed “IBS” therapies (also irrelevant) and then basically gave me little further assistance. (This was after they tried to tube feed me with sugar-laden, gluten-and-dairy-based enteral nutrition… but that’s another story).
It was at this point that I found other sources of information and pursued my training in nutrition, functional medicine and functional biochemistry. I never intended to work in this arena at all. It literally was about saving and healing myself.
There is a gastroenterology professor featured in the aforementioned video – and he was the very consultant who tried drugs and enteral feeding. Quality and type of nutrition and nutrient supplementation was not thought of as potentially relevant for EDS at that time. My how times of changed…
It is actually a source of delight to me now that the professor who affected my health negatively with his ignorance of the importance of nutrition in EDS – and MCAS in particular – has been open-minded enough to recognise that the dietary intake and nutrient supplementation within these conditions is of paramount importance. I have been working quietly in my practice for years helping patients to navigate through this tricky realm. It is nice to know that the mainstream medical establishment may finally get funding to formalise research into this area.
In the meantime, however, it is pertinent to address whether, why and to what extent nutrition plays a role in the EDS/MCAS/POTS trifecta. Whilst we’re waiting for science to prove it – what can I share about what I know and how I help my clients through the nutritional landscape?
EXISTING NUTRITIONAL INFORMATION FOR THOSE WITH EDS/MCAS/POTS
I get quite a lot of enquiries from patients with EDS. For many reasons, most notably because so many symptoms are gastrointestinal and food-reactive in nature, it is common for people to reach out to me assuming that there is a nutritional plan for EDS and a single ‘way to eat’ that helps those with the EDS and MCAS symptoms – helping them regulate their digestion and immune system.
For the uninitiated, these symptoms include (but are by no means limited to) gastroparesis, gastroesophageal-reflux-disorder, slowed motility, recurrent SIBO, constipation and/or gastric emptying issues (too fast, too slow), rampant food intolerance reactions (which can be literally ANYTHING from bloating to diarrhoea, rashes to headaches and brain fog), unpredictable dizziness and apparent blood-sugar craziness in response to eating (this feeling is not actually typically related to blood sugar, but it certainly feels that it is).
Then you can add onto this gut-centric list the non-gut symptoms: anything from itching, rashes, hives and dermatographia (where marks can be left by light touch on the skin) to migraines, pressure headaches, generalised lack of proprioception – and don’t forget the joint dislocations (sometimes the least pressing issue, sometimes actually disabling and debilitating). Then there’s bladder issues, hormonal issues and the mental health elements.
Basically, anyone with this trifecta is dealing with a lot. And this trifecta exists on a spectrum – not everyone with EDS is similarly affected either in terms of the amount of symptoms or their severity. EDS is as variable as the amount of individuals who deal with it.
I have observed the nutritional realm closely in the last 5-6 years since my diagnosis. I have realised that what most people ‘sell’ or promote is one-stop-shop nutritional recommendations which utilise science, mechanism and an understanding of biochemistry to design ‘diet plans’.
I recognise that this works for some situations, but I also feel that my entire approach to nutrition for all of my clients is borne out of my experience with EDS nutrition.
Because with EDS/POTS/MCAS all bets are off and any predictability of responses simply does not exist, particularly when MCAS is part of the picture. The nutritional landscape, and the recommendations for health found within, is not designed for someone dealing with this trifecta.
Instead, personalised nutrition is called for – and that’s probably why my attitude to ALL of my clients (irrespective of diagnosis) is about personalised and permissive nutrition which takes their wellbeing/history/habits/experience into account, rather than prescribing one diet for all.
Of course, this isn’t a simple answer. EDS patients tend to come to me after they have already tried (and experienced no success with) nutritional approaches which address part of their health picture: the low-histamine diet lists (histamine and mast cell activation syndromes are close cousins), some form of Paleo diet because it’s low-inflammation, sometimes Ketosis is attractive because of its purported reputation of regulating inflammatory markers.
Often the resulting nutritional intake resembles a complex jigsaw of nutritional styles. This is why I write about the psychology of food and orthorexia so much … because I have watched so many people (and myself) attempt to use food control to manage all of their symptoms. Unfortunately, even if this has some success, it is incomplete… and, moreover, intense stress and anxiety is created in the process.
The food obsessions within the EDS trifecta arise out of three things:
- For anyone with gastric issues as part of their EDS, eating can actually be PHYSICALLY CHALLENGING: as in, it hurts, it is uncomfortable and it can in no way be an unconscious process
- For anyone with MCAS, eating releases histamine and their inflammation burden is naturally higher so foods really do create systemic reactivity that can be unpredictable, painful and life-affecting. Again… food actually HURTS.
- Lastly, and this is the one many people forget, the neurological wiring in anyone with a connective tissue disorder is slightly different. The connective tissue is a part of the body which is rich in nerve endings. If your connective tissue is impaired, these nerves are affected: either not communicating accurate information to the brain, or OVER-COMMUNICATING distress signals and feedback back to the brain.
This not only makes the entirety of the gastrointestinal tract an area that our brains our highly, highly aware of (sometimes called ‘visceral hypersensitivity’) but this creates a highly sensitised awareness generally.
The result is a brain which struggles with synthesising the sheer quantity of information… and anxiety arises, coupled with a desire for relief, control and some form of rulebook to regulate the sensations we experience.
With this as a backdrop, it is no wonder that food becomes important and stressful… and we seek the way to eat that takes the pain away. But sometimes, it’s not just about food and to help us with all the stressors of the above, we have to take a step back and talk about nutrients. For those with EDS/MCAS/POTS and living with the gastrointestinal distress that these conditions can create, nutrition doesn’t always have to equal nutrients from food itself.
NUTRIENT SUPPORT AND EDS
What I have observed is that there seems to be a near-universal (and yes, I’m hedging my bets, but this change is relevant whoever you are so I’m risking little) variation in genetics in EDS when it comes to both Vitamin A synthesis from beta-carotene (ridiculously common, even in those without EDS) but also within a preference for metabolising Omega-3 fatty acids towards an Omega-6 pathway, which is pro-inflammatory rather than anti-inflammatory.
This means that some form of Vitamin A supplementation is likely to be warranted – or a diet rich in Vitamin A from ANIMAL sources (not carrots – that’s beta-carotene not retinol)… which equals organ meats, particularly liver. Similarly, care must be exercised with Omega-3 supplementation (no mega-dosing) and obtaining these fatty acids directly from food sources (oily fish) is a good strategy.
I have also noticed that many of my EDS patients also have some evidence of B6 and Zinc deficiencies. This may or may not be diagnosed as the condition Pyroluria (where excessive pyrroles are made which bind B6 and Zinc so it cannot be used), but in some cases the deficiencies are the result of malabsorption due to digestive compromise. This is more common if EDS patients have been on the contraceptive pill.
I have found that supplementation helps with these deficiencies, more so than diet.. This isn’t about getting all of your nutrients from food, nor about using nutritional supplements to remedy collagen issues.
Instead, it’s about filling some of the gaps created by quirks in metabolism and biology and giving the body more than enough of what it needs, without having to work too hard to get it from food. Without Zinc and B6 so many biochemical processes are impaired – everything from immune health to neurotransmitters and hormones. And without Vitamin A many things go awry – most notably, gut function and lining integrity… which is a problem anyway for those with EDS, so any help we can get here is welcome.
In essence, shoring up the supply of missing nutrients in those with EDS tends to do one major thing: relieve some of the stress on the body. This is helpful for the obvious reason that a body which is dealing with a trifecta of conditions is already under quite a lot of strain. Add to this that much of the issue within MCAS is based on the body being in a state of heightened stress and it becomes obvious why relieving some of the hard work can really change the functioning and overall wellbeing of anyone with this trifecta of conditions.
However, I still haven’t given you any idea of what to eat – or how important food itself is for someone with EDS or the trifecta.
FOOD AND EDS
Everything about nutrition for someone with EDS is about looking at nutrition in a different way. It isn’t solely about the nutrient composition of the foodstuffs and the mechanistic interaction these foods have with human bodies. Instead, it is about the recognition that digestion involves the gastrointestinal tract, the nervous system, the immune system and (to an extent, though often as a byproduct) the endocrine system. In someone with the EDS/MCAS/POTS trifecta every single one of these body systems can be affected.
Food, therefore, is absolutely fundamental to those with this trifecta. It can influence every system that we struggle with – for better and/or for worse. So getting it right (for you) really matters. But within EDS/MCAS/POTS, getting it ‘right’ is not just about what to eat, it’s also how, the preparation, the environment, the nervous system state and the mindset around food. In short – dealing with nutritionally supporting those with the EDS/MCAS/POTS trifecta truly does require an holistic approach.
For me, the most obvious issue is that with tissue laxity can often come tissue permeability and issues with the healing of the skin. Having had issues with a ruptured oesophagus in my past I perhaps have more experience than most in this area, but it’s as simple as being cautious around anything that encourages gastrointestinal permeability and/or sluggish transit. Pretty universally, I find my EDS clients are better without gluten, and often without dairy (though this can come back in after a time without it and is a very individual thing). It’s boring, and the ‘anti-gluten’ message is everywhere – but for those with impaired connective tissue gluten (and its ability to expand tight junctions within the gut) really can be a problem.
Beyond this, foods which promote tissue integrity and do not promote inflammation are always a sensible bet. This does not mean being anal about never having anything that is the slightest bit inflammatory, but it does mean paying attention to the overall composition of the diet. This is why I have found a Paleo-esque approach to be most beneficial: both because it eliminates the most common inflammatory anti-nutrients, but also because it loads up on beneficial nutrients.
But with EDS it isn’t just about these anti-nutrient/nutrient balancing acts. It is much trickier than that: it becomes about textures, fibres, transit time and general breakdown potential of foods. Those foods which require more digestion and more time within the GI tract in order to be effectively processed tend to be a little more complicated to deal with for those with this trifecta of conditions.
Moreover, when it comes to the proteins – and the carnivorous red meats typically loved by the conventional Paleo crowd – I find that much more care must be taken for those with EDS. Many EDS patients have a natural, lifelong aversion to red meats and dense proteins, feeling as if it is heavy in their stomachs.
Digesting this meat is not something that is made easier just by taking inordinate amounts of Betaine HCL and enzymes, and in truth I am unsure as to the mechanism behind this digestive difficulty, but it is one I experience myself. I often observe that combinations of high fat and dense protein (i.e. the fattier cuts of meat, such as red meats) are more difficult for those with EDS/MCAS to break down and deal with. It is perhaps to do with the density of amino acids and dietary fats coming in one package. Nevertheless, a dietary intake of more lean proteins with added plant fats tends to work better – think chicken with avocado dressings or using lower fat mince to make dishes cooked in coconut or olive oil.
Speaking of cooking – this is another part of EDS dietary management. The HOW is as important as the what. This is not about the ‘food combining’ that was all the rage in the 90s, but instead is an understanding of the fact that a large part of the EDS/MCAS/POTS picture is nervous system overwhelm. When eating, the body is being asked to process a great deal of incoming information in the form of food. I have often found that simple meals are digested more easily for those with EDS/MCAS, sometimes consuming just one food at a time around the plate and minimising complexity of spices/herbs/flavours in the one dish.
Then there’s those who prefer the texture of their foods in a specific way. I believe that this sensitivity is part of each person’s unique nervous and gastrointestinal sense of the nutrition as it moves through their digestive tract. Personally, I cannot cope with liquid nutrition or smoothie-style food and my body really doesn’t understand juices. Conversely, I do digest foods better, particularly proteins, when there is some form of liquid accompaniment: a sauce, oil, dressing, dip.
It’s like getting the texture right, and using sauces to help my body move things through my GI tract is the perfect combination to help my body understand what it is eating and how to deal with it. But what works for me DOES NOT work for all of my clients. Everyone must find their own ‘best way’ to digest.
Cooking also changes the integrity of the foods that we consume. Raw food can be really rough on the digestion of someone dealing with motility and sensory issues within their EDS. Vegetables that are undercooked (i.e. lightly steamed) might be deemed ‘healthier’ in the nutritional world, but for those with EDS these might not be digestible and therefore are rendered practically useless because they create more stress.
More than all of this – the act of eating is a neurological process as much as it is a gastrointestinal one. The MCAS responses of those with this trifecta are not only based on the presence of certain foodstuffs or anti-nutrients in the body. MCAS is not just an allergy to a food or a response to one or a couple of specific triggers (though this can form part of the picture).
The complete view of MCAS respects that mast cell degranulation occurs in response to a threat. The threat can be from an anti-nutrient, but more often than not it is a response to a perceived threat in the environment.
It is my belief that this is one of the reasons why MCAS so consistently occurs in those with EDS. Having connective tissue disorders means that the environment is automatically a little more destabilising and threatening than it is for those in ‘normal’ bodies. This instantly up-regulates the perceived level of danger, even when you’re just standing still. This automatically more alert immune system/nervous system response present in those with connective tissue disorders means there is a higher prevalence of mast cell dysregulation.
So much of my work in general – not just with EDS/MCAS/POTS patients – is based on this up-regulated sense of threat that the nervous system develops. For some, this is due to childhood traumas, birth traumas or historic illness. For those with EDS the up-regulated nervous system preparedness to fight is more innate than that: it is an inbuilt protection mechanism against the precarious nature of their own lax connective tissue.
In light of this, dealing with nutrition in EDS is only partially about removing the most triggering, inflammatory and digestively challenging foods.
It is also only partially about supporting nutrient levels utilising supplements to assist with optimal functioning of the body.
Instead, much of the work in EDS is actually about working on nervous system balance. This is why my work in EDS and beyond includes and revolves around mindset, perspective, attitude and emotional processing. Utilising our understanding of ourselves we can explore techniques which work on our nervous systems to find a different way to live inside a body with EDS.
Within EDS the food you eat IS important: to minimise stress, inflammation and reactivity AND to nutritionally support physical functioning. This is a good foundation. However, it is not all about the food – it’s about how it’s prepared, the timing of eating, the environment in which you take it in and also the way you feel about it as you eat.
By not just focusing on the ‘what’ of the food, but by dovetailing nutritional care with a whole network of environmental and emotional awareness processes, those with EDS can find that digestive challenges, and many of the reactivity/distress symptoms that occur within MCAS and POTS slip into the background.
We aren’t just changing the diet: we are changing the alertness and reactivity of the body receiving the nutrition.
Symptoms may never fully disappear and doing this is not always simple. There is no one ‘Diet for EDS”, there is just an evolution of understanding your unique EDS body and the way it works. Then it is about learning how to integrate it into the world when the world itself, automatically and always, feels like an unsafe place to be.
This is why so much of my practice is based around those who are dealing with upregulated sympathetic nervous system responses, which are now ridiculously common regardless of whether you live with a connective tissue disorder or not. If you would like my help to understand your body, your responses, your inflammatory triggers or how to learn about your own unique body and how to nourish yourself, you are welcome to reach out to me and I will be delighted to help you find your way to feel a little bit safer in your own body.