I’ve got what??

Let’s break this down into more manageable bites, shall we?  I’d never heard of any of this stuff before so I’m guessing you might be in the same boat.  The doctor said I’ve got what now?

Pyrroluria

Let me preface this by saying, I am not a doctor!  My understanding of the condition is limited to my meagre, high-school science comprehension of biological functions, but here goes…  Pyrroles, are these little molecules we all have in our urine.  Everybody has them.  I don’t know why they’re there, they just are.  People with pyrroluria (also sometimes called pyrroles themselves) have too many of these particles floating around.  Now this is a problem because pyrroles like to bind to Zinc, taking it out of the body on a urinary waterslide before it can be absorbed.  As a consequence, pyrroluria sufferers end up with low Zinc.  Come back, Zinc!

Without Zinc, the body looks for other, similarly composed metallic elements to perform its day to day functions.  Heavy metals in the environment are more readily taken up by the pyrrole patient and amalgam dental fillings are said to be particularly noxious.

Considering we’re talking about a deficiency in a pretty necessary element and additional minor toxicity from the presence of foreign metals, the symptoms are varied and differ from patient to patient, for me they were anxiety, digestive issues, low dream recall, emotional tension and insomnia.

Oh but it gets better… pyrroluria has this marvellous method of further compounding its effects on the human body, something like a snowball effect.  Zinc, you see, is an essential component in the bodily process that manufactures stomach acid.  If you have pyrroluria, you’re low in Zinc and as such, you become low in stomach acid too.  This condition, having low stomach acid, is called hypochlorhydria.

Hypochlorhydria

Hypochlorydria, low stomach acid, funnily enough often presents with the same or similar symptoms to high stomach acid!  For me, this meant a vague, nauseous feeling every hour of every day.  I also suffered constant reflux, regardless of whether my stomach was full or empty, but not the typical kind, oh no I had “silent reflux”, otherwise known as laryngopharyngeal reflux.  Basically, this is when the stomach’s contents regurgitate into the larynx and pharynx rather than the more typical oesophageal regurgitation so rather than experiencing heartburn, I had a disturbing symptom that I have come to call the “menthol” experience.  An unnerving hot/cold sensation in my throat that felt like I’d just swallowed a Fishermen’s Friend menthol lolly when I’d had nothing of the sort.

For a long time the medical profession only recognised that people could suffer from high stomach acid.  The solution was simple, put them on medication to neutralise the stomach acid or to stop the body making the acid with proton pump inhibitors (PPIs).  The test to definitively assess the patient’s stomach acid was extremely expensive and the odds more in favour of high stomach acid, that it became “best practice” to assume it the acid was high and proceed from there.  It is of course, interesting to note that the studies on stomach acid would be funded by the large pharmaceutical companies (Big Pharma) who manufacture the medication.  The treatment for low stomach acid does not utilise patentable medication and as such, funding it would be of no profitable interest to Big Pharma.

Anyway, the point of the story is this: without adequate stomach acid, the pyrroluria patient (me!) cannot digest their food properly, so less and less nutrients make their way into the body.  The Zinc deficiency becomes more and more profound and the symptoms magnify.  In addition, the neutral environment of the hypochlorydic stomach provides a comfortable resting ground for nasty bacteria and parasites.  Whereas a normal, highly acidic stomach would kill off any potential nasties, the pyrrole stomach cannot and they make their way into the bowel, ready to wreak havoc.  People with prolonged untreated hypochlorhydria often find themselves with an imbalance of bacteria in the gut known as gut dysbiosis, small intestinal bacterial overgrowth (SIBO), and/or leaky gut syndrome.

Gut Dysbiosis & Leaky Gut Syndrome

So, you all know those commercials on TV for certain probiotics that have pictures of the “good bacteria” and the “bad bacteria” standing on a scale in your digestive system?  My bad bacteria, it seems, seriously outweigh my good bacteria.  In fact, conditions in my bowel had become so inhospitable that the good guys had fled the country in some kind of probiotic mass exodus and the remaining wastelands were inhabited solely by renegades and freeloaders, aka the bad bacteria.  According to my digestive stool analysis, most of my baddies were garden variety candida.  The same organism responsible for thrush had colonised my colon.  Joy.

Gut dysbiosis in turn, leads to leaky gut.  Don’t worry, it sounds worse than it is!  Your intestinal wall is lined with millions of tiny little finger-like protrusions called “villi”, just like a shag rug which is apt because “villi” is Latin for “shaggy hair”.  The purpose of the villi is to increase the surface area to volume ratio of your intestinal wall for maximum absorption of nutrients.  When your gut is unhealthy, due to allergens and irritating foods (like gluten or dairy, for example), low stomach acid or prolonged use of medications such as antibiotics, anti-inflammatories or contraceptives, the villi can become inflamed or damaged.  The result is twofold, not only are you limited in what nutrients you can absorb through the regular channels, but the intestinal wall becomes permeable which it’s really not supposed.  Substances which are meant to remain purely within the confines of the digestive tract can seep across the newly permeable gut wall, directly into the bloodstream, leading to food intolerance and pseudo-allergic reactions.  The symptoms of leaky gut syndrome are as diverse as pyrroluria itself so it would require a little narrowing-down before I could work out what part of what was making me feel each different ailment.

Unfortunately, there’s not much information readily available on pyrroluria and the subsidiary conditions as many members of the medical faculty don’t believe it exists.  Perplexing, when it can easily be tested for by analysing the presence of the pyrrole molecule on the patient’s urine, but hey, what would I know, right?  I’m just the patient.  All I do know is I’d been feeling wretched for a year and had been hand-balled through at least 5 different GPs, a psychologist and a gastroenterologist, all shrugging their shoulders at my ongoing disorder, before I discovered a doctor with a special interest in pyrroluria who was not only able to give me a diagnosis but more importantly, a treatment plan and some much needed hope.  It’s an odd thing to be happy with an incurable diagnosis but the relief of knowing you’re not going stark raving mad and that there really is a physiological problem is beyond words.

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