Welcome to the somewhat bewildering tale of how I ended up writing about Coeliac Disease, GERD, and Idiopathic Pulmonary Haemosiderosis (IPH).
I invite you to settle in – perhaps with a gluten-free snack – and join me on this journey through some health mishaps, with a fair dash of dark humour to keep things light.
The Early Days: Business, Bread, and Blissful Ignorance
Let’s begin in my early thirties. Life seemed to be on track. I was busy building businesses, chasing ambitions, and had big plans for the future. Back then, bread was my best friend. Little did I know that my gluten-filled diet would soon become my greatest nemesis.
It all started on the 5th of November, a date forever etched into my memory. Out of nowhere, I coughed up blood. Initially, I chalked it up to stress or overwork. After all, there were labels to print, deadlines to meet, and who really has time to worry about such things, right especially when you’re young and invincible ?
Horror: That night, things escalated dramatically. I woke up, choking on blood – a scene straight out of a horror film. So, off I went to A&E, where I spent a night sitting in a hospital waiting room, trying to maintain some dignity while coughing up blood into a tissue.
The Medical Mystery: Playing Diagnostic Guesswork
A few weeks later, after some hospital stays and a mountain of tests, I left with a handful of fancy terms: “ground-glass opacity,” “bronchiectasis,” and, most importantly, “we don’t know what’s wrong with you.” Bloody Marvellous !
I left my job soon after because, let’s be honest, near-death experiences have a way of making you rethink your priorities. However just when I thought I might be out of the woods, it happened again – another massive haemoptysis (fancy word for coughing up a worrying amount of blood). This cycle of coughing blood and baffling doctors became my new normal. At this point, I should have been given a loyalty card for the hospital.
The Breakthrough: Coeliac Disease and IPH
Fast forward a couple of worrying and traumatic years, and finally, I met Dr Ben Sutton at Queen Elizabeth Hospital in Birmingham, who solved the mystery. It turned out I had Celiac Disease, which was completely unexpected. As if that wasn’t enough, Dr Sutton also diagnosed me with Idiopathic Pulmonary Haemosiderosis (IPH), a rare condition where your immune system attacks your lungs. It’s part of the wonderfully obscure Lane-Hamilton Syndrome. Lucky me maybe I should have done the lottery that day?
The Gluten-Free Life: Bidding Farewell to My Favourite Foods
Thus began my reluctant relationship with gluten-free living. It was a rough adjustment at first – imagine loving food only to find out that bread, pasta, and practically everything you once enjoyed was now off-limits. It was like losing a dear friend. Suddenly, every meal became a research project, with gluten lurking around every corner, waiting to strike.
As much as I mourned the loss of gluten, my health did improve. The bloody episodes became less frequent and less intense, though they never fully disappeared. IPH, it seems, enjoys making the occasional dramatic reappearance, just to remind me that it hasn’t gone anywhere and it’s still lurking, waiting to bugger up my plans !
The GERD Arrival: The Unwanted & Uninvited Guest
Finally I thought I had my health issues under control (as well as I could), Something new! GERD decided to join the party.
Reflux so severe that it woke me up at night, leaving me with acid in my mouth and the taste of blood on my tongue. Charming, right? Doctors informed me that years of untreated Celiac Disease & Acid reflux had likely caused the inflammation responsible for the GERD.
Now, on top of avoiding gluten, I had to manage GERD triggers too – spicy food, caffeine, chocolate…tomatoes and the temptation of late-night snacks. Fun times ! – even more food on the “I can’t eat” list.
Navigating Life with Multiple Conditions
Over the years, I’ve come to realise that managing chronic conditions is as much about maintaining a sense of humour as it is about managing symptoms. Yes, unfortunately, I’m the person who reads every food label like it’s a legal contract, who asks a thousand questions before ordering at a restaurant, all while requesting the dreaded allergen folder… you know the one: usually blue, usually massive, and capable of broadcasting to the entire restaurant, “we’ve got one here!”
Yes, it’s even been known that I’ve occasionally packed my own food for a meal out. But you know? These small acts give me back some control over my health.
I’ve learned that there’s no universal guide to living with conditions like Coeliac Disease, IPH, or GERD – it’s about paying attention to your body and, sometimes, just hoping for the best.
You learn to listen to the warning signals and adjust accordingly, and sometimes, you just have to laugh at the absurdity of it all! like when you realise that the gluten-free bread you’ve just bought at an extortionate price has the texture of cardboard or doubles up as a cracking hammer, or when you’re explaining for the hundredth time that, yes, even a crumb of gluten can wreak havoc and yes “would you mind just checking there isn’t gluten in that gravy”.
Why I’m Sharing My Story
I’m not here to offer medical advice. I’m simply someone who’s been through the wringer with chronic health issues and come out the other side- a bit more fragile, a lot greyer, but still standing.
My goal is to help anyone I can, by sharing what I’ve learned along the way, providing useful information, raising awareness, and fostering a sense of solidarity. If my story can give someone insight, a sense of connection, or even a moment of laughter in the face of it all, then it’s worth sharing.”
Dealing with these conditions isn’t the end of the world. It’s just a different path – one that might require more planning and more care, but it’s navigable. So, if you’re in a similar situation, know that you’re not alone. There’s a whole community out there, figuring it out, day by day, just like you.
Thanks for reading, and welcome to the unexpected journey!
Cheers Jon
Why not check out my blog post on Idipoathic Pulmonary Hemosiderosis
