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Victoria Fenton - Functional Medicine Consultant, Nutritionist & Health Coach

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How To Handle Multiple Diagnoses – Histamine Intolerance, POTS, Gluten Sensitivity & So Much More… – Victoria Fenton
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How To Handle Multiple Diagnoses – Histamine Intolerance, POTS, Gluten Sensitivity & So Much More…

The Strain of Remembering All The Details

My brain frequently hurts with all of the data I feel I have to (and should) remember on a daily basis.  I’m constantly frightened that I’m going to forget the relevant details for a client and I use Evernote as a generalised dumping ground for any oblique reference to everything that I ever think might be useful (often forgetting to search it when trying to remember said references!).  My clients know that when I stumble across something useful, even outside of consultations, I am always going to email them with the tidbits I dig up or a link to something that might help – be that a product, a YouTube video or an article which reflects their situation.

It’s cliched but true that whenever I learn more, which I do daily, I become acutely aware of how little I do know, and also how frightened I am that I am going to forget the very thing that a client might need.  Body biochemistry is seemingly infinitely complex, and that means that there’s a hell of a lot to remember.

In a professional capacity this is fairly normal – and I can always refer to my resources to jog my memory and ensure I’m really helping my clients.

However, this experience of feeling overwhelmed with information is actually a common theme in the lives of my clients.  The internet is a minefield of potentially relevant resources which they’ve Googled in an attempt to find their health answers and yet such a quantity of knowledge can prove suffocating, rather than illuminating.

 

Can You Ever Know Too Much?

When it comes to living life with almost unquantifiable data we can become overburdened with this wealth of material.  Deciding and applying the truly relevant and important parts from the weight of everything we have learned is impractical, if not impossible.

 

In my experience, attempting to remember all of the details of physiological function and then act according to that knowledge actually creates paralysis. Faced with too many options, we freeze.

 

This concept was beautifully outlined in Barry Schwartz’s book “The Paradox of Choice, Why More Is Less”, where the dilemmas faced by a mind confronting limitless options almost overpowers decision making.

For someone like me, probably veering to the Type A spectrum with a high degree of perfectionism and a simple desire to get things “right”, information can be a poisoned chalice, particularly when it comes to healthcare.

One of the best and worst decisions I ever made was to study everything I could about human physiology, most importantly – my own.

It was the best because it means I now carry around vast insights into every feasible health complaint.  

It was the worst because I suddenly became aware of the complexity of how to make a decision when there are so many variables, factors and complications to consider.

 

My History With Healthcare Information

My own case is perhaps an extreme, but it is in no way uncommon.  I have Ehlers-Danlos Syndrome, which at its heart is a simple, genetic connective tissue disorder.  The problems arise because it is often combined with an array of genetic potentials which, once ‘activated’, lead to the development of a variety of conflicting issues.

My little laundry list of problems included gut infections, peristalsis issues, GERD, gastroparesis (and even projectile vomiting after every mouthful), Postural Orthostatic Tachycardia Syndrome, histamine intolerance (likely Mast Cell Activation Syndrome or MCAS), SIBO, non-coeliac-gluten-sensitivity and associated immune hypersensitivity and autoimmunity (joints, leaky gut), vagus nerve issues and consequential sympathetic nervous system dominance.  And just because I’m greedy (and without knowing whether this is a contributing factor or a consequence of excess oxidative stress) I also have pyroluria or kryptopyrrole syndrome (shockingly high pyrroles suggesting massively low B6 and Zinc levels).

Learning about all of those things was what began my education.  Uncovering the truth about what they all meant and how they all interconnected (and why) was actually my journey whilst I learned about everything else “physiology”.  My way to help myself began with deep study of biochemistry and gaining qualifications in some quite high-level metabolic analysis.  I felt that the key lay in comprehending how bodies worked, systems fit together and how external factors – every individual food, exercise choice, sleep quantity/timing/quality, environment, pollutants, allergens and toxins etc. etc. etc. – would interact with my internal milieu.

 

Initially, I thought that information - understanding interactions and isolating all of the variables to control the end result - was the only way that I could ‘hack’ my existence and ensure symptomatic relief. Functional Medicine - understanding the interconnectedness of systems-based healthcare - was a natural field of study.

 

How I Healed

But I want to be really honest.

 

My training in Functional Medicine, with all the information and biochemical understanding I gained, along with the comprehension of hormones, digestion, genetics and nutrition etc. was not enough to allow me to FULLY “heal”.

 

I know that that might be shocking, given that am a Functional Medicine Practitioner – but there is a real reason why I have named myself a Functional Nutrition Coach”.

I learned the hard way that information is a necessary precursor to any healing journey.  However, knowing more is not always the best way to get the ultimate results (i.e completely healing).

Whilst clearing parasites and infections, ensuring a life without excess toxicity or genetic methylation complications, or dealing with gut dysbiosis is essential, all of this is work will resolve symptoms and clear out surface-layer ‘issues’.  For some people this is enough, and allows for drastic improvements.  But for the multiple-diagnosis patient, those with so many complicated interrelating factors, I have found that there are typically deeper issues underlying the manifestation of such an array of illnesses which contribute to the persistence and recurrence of issues.

The solution to this sort of situation is actually not more information.  It is not in learning more data to try to battle the complexity of combined illnesses.

Take my example:

Anyone who knows anything about even a few of my list of diagnoses knows that each one of those conditions comes with its own little diet-sheet of recommendations, exercise prescriptions (or rest prescriptions), a handful of supplements which might help or exacerbate problems and a whole host of ‘guidelines’ to follow to ensure symptom relief (because they’re only ‘manageable’ diagnoses after all, supposedly without cure).

The problem is that all of that information conflicts.  If I stuck to every diet I was supposed to be on – low histamine, low FODMAP, gluten/dairy/sugar/refined-anything free, SCD preferably, possibly even GAPS, definitely AIP, low oxalate, low salicylate – I was left with only a handful of foods.  All of which had to be cooked a certain way, always fresh, never raw, never cold, never too close to water… blah blah blah blah blah…

Already it is impossible.

The kicker is the histamine piece, of course.  Because of course, histamine is naturally occurring and perfectly healthy in the right amounts.  Anything which causes stress raises histamine levels.  And this means that even driving past a field full of flowers puts a few too many pollens in the air which raises histamine – after which, even a food that was perfectly safe one minute will cause hives and reactivity the next.

With histamine issues you are dealing with a highly volatile cascade of inflammatory cytokines which are responsive to just about everything, including stress levels from the emotional, mental, social or psychological realm and the process of eating itself.

 

In short - you simply cannot do an equation or calculation which can show you how to behave, what to eat, what choice to make in order to feel OK and stay safe. There is no algorithm that can predict the outcome because you simply cannot factor in all of the contributing components.

 

Even if you could ‘think it through’ and work out the right way to behave, it is my contention that the very effort of doing so completely aggravates the sympathetic nervous system and stress centres, undermining your own calculations by piling in histamine with the simple stress of making those mental somersaults.

More than that – doing ALL of the above, with diligence and precision as if it is a full time job, is ABSOLUTELY, 100%, IN NO WAY A GUARANTEE FOR SYMPTOM REDUCTION OR REMOVAL.

So not only is it emotionally, psychologically and practically difficult, it is stressful and exhausting and provides absolutely no guarantee of success.

 

How To Better Handle Multiple Diagnoses

I am not the first to make this observation.  In fact, if you want the deep dive into histamine specifically, do follow Yasmina Ykelenstam on healinghistamine.com (formerly The Low Histamine Chef).

You may think that I’m going to tell you how to find other ways to manage illness or inflammation – but what I have to offer is actually nothing to do with meditation or self-care practices.  My route to healing wasn’t in massage or ashrams, and (with the Ehlers-Danlos) I just don’t do yoga.

For me, the immune dysregulation and hypersensitivity lay at the core of the cascade of ‘illness symptoms’, and whilst mine manifested in the issues listed above, in truth immune issues and inflammation are at the heart of those who are suffering from multiple sensitivities, diagnoses and complaints.  Over-sensitisation of the immune systems is, in part, genetic.  But it is also, in large part, epigenetic.  Our environment and experiences turn on immune hypersensitivity.

It seemed obvious to me, therefore, that true healing was less about finding ways to avoid all the things which activated my immune system.  This meant that all of those rule books, diet sheets, guidelines of practical management advice etc. – and all of the information I could possibly learn – was simply too much information, too many things, too massively unpredictable, an just too… stressful.

 

Instead, if immune dysregulation occurs because our epigenetic environment has turned ON the switch of hypersensitivity (and autoimmunity), healing surely must lie in working out how to turn that switch OFF.

 

It seemed obvious to me (eventually) that healing could not come because I knew how to isolate, identify and avoid or fight down any potential threat.  This was simply perpetuating the mental framing of life as a real threat, which I realised was a deep-rooted part of immune dysregulation.  Our immune system reacts to threats, whether perceived or real.  This means that having all of the information which taught me what was wrong for my health and my conditions simply set up the comprehension that life was a threat, everything in it was a threat – so naturally the end result was immune hypersensitivity to all of those imagined threats.

 

My perception of life and food as a world of potential enemies was, independently of all other variables, contributing to (if not actually causing) the sensitisation of my immune system to everything around me.

 

To my mind, health should never feel like a constant fight against an enemy, or an army of enemies.  Those rules and lists of foods, isolating nutrients as ‘evil’ or ‘bad for you’ only perpetuates the immune hypersensitivity which causes the issues in the first place.

Instead, healing starts when we can stop seeing everything as a potential battle and possible threat  Doing that has a physiological component.  But dietary strategies, treatment protocols and ‘being good’ are often not enough.

The next step is a process of establishing the reasons why your immune system has up-regulated: there will be physical reasons, yes – but also psychological ones, historic traumas, emotional conflicts or difficulty processing emotional baggage, relationship issues, genetics (to a degree) and literally every facet of personal experience may have left you open to feeling unsafe, insecure and vulnerable.

This is what I work on with my coaching clients.  All of the information I possess about nutrition, biochemistry, food sensitivities and HPA axis dysregulation contributing to immune challenge is essential.  Yet it is a just one part of the journey.

Finding a way to truly turn OFF immune hypersensitivity often requires the deeper work, including emotional understanding, mental reframing and deep self-awareness.  Understanding what makes an individual client feel so unsafe that they, unknowingly, upscaled their immune responsiveness is a big part of my detective work as a practitioner.

I used to work as a PA in central London.  I have often been asked the link between that career and this – and the truth is that all I have ever known how to do is remove stress from others’ lives.  In healthcare, therefore, I have become hugely adept at identifying the ‘threat’ factors or stressors affecting my clients – largely because I worked for so long to isolate them in myself.

When immune hypersensitivity and over reactivity has become a coping mechanism, and a means to evade that which threatens us in some way, it can be convenient to enact enhanced restrictiveness as a way to feel ‘in control’.  I believe that to deal with multiple diagnoses which may seem to require so many conflicting prescriptions and protocols it is essential to identify the root of the discord, and the reason for the escalation of threat sensitivity.

Sometimes this is self-work, self-acceptance, learning to trust oneself and life.  Sometimes it’s about leaving situations that are actually extreme stressors – toxic relationships, damaging work environments (whether literally or from colleagues), abusive familial situations etc.  Often it’s about working through the emotional challenges around physical health, and the stress created emotionally when faced with opening up the diet to greater and more varied food consumption.  And it is regularly a process of deeply accepting the role and benefit of nutrition in life.  As someone who projectile vomited after every meal for years, I deeply and profoundly know how to work with these issues.

I believe there are solutions – and if you are battling multiple diagnoses, numerous diet prescriptions and confusing, conflicting ‘healthcare guidelines’ there is a way through.  I am going to continue to write about these issues because I don’t see them discussed anywhere in the autoimmune environment.  Restriction is often seen as recovery, with patients being judged by how ‘good’ they’re able to be with their AIP protocol… and this is just something I cannot agree with because it perpetuates threat, it promotes meritocracy around dieting and food and it further distorts self-perspective, self-acceptance and the overall potential for true healing.  Leaving a patient to feel that they can only feel safe if they’re avoiding a whole list of foods is just not acceptable to me.

So if this resonates with you as an approach, and you sense that I might have the right approach for you to find a way to be in your body please do book in for a Free 15 Minute chat with me.  I’ll be happy to chat with you and work out how to help you get your health back.

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