2024 was a rough year health-wise, and I’ve finally found some answers.
The good news is I can manage what I’ve got.
The bad news is.. what I’ve got.
Last year was filled with illness, that set in around June. It included tiredness, dizziness, panic attacks and fatigue. It led to general dysfunctionality, and meant I had to take lots of time off work.
The lack of clarity piled stress and anxiety, on top of the physical symptoms I was suffering, which created a vicious cycle.
I was told I might have coeliac disease in October last year, and in January I had a biopsy which tested me for it.
I had the procedure, and kept myself on a gluten-free diet in the months after, and frankly I have not felt better since this ordeal began.
I also decided to quit my job and find a new one, which will hopefully help the stress levels too.
In February I received a letter saying the results of the biopsy all-but confirmed I have coeliac disease. The doctor doubly-confirmed all of this, and sent me on my way.
I was overcome with relief on the one hand that I had some certainty about what was wrong with me, and I could at the very least, manage it so I didn’t get ill again.
But there was also trepidation.
The next task, was adapting to a world where I have to constantly check what I’m eating.
The prospect of making a fuss every time I go out is not something I relish.
But it is unfortunately my new reality.
While the doctor answered all of my questions, I found the level of help from the NHS quite minimal. There was no sheet with help, no list of items to avoid, not dietitian appointment follow up.
I was just told to join Coeliac UK, which I have of course done, and I am going to raid the internet for tips, recipes, suggestions for good places to eat out, and more.
And the rest is basically up to me. And anyone who can help me of course.
I am hoping that this doesn’t cause the anxiety and a heightened sense of nervousness about everything to return.
When I was experiencing that last year, it was honestly some of the lowest moments of my life.
Naturally my mind has turned to how I can adapt.
As I write this, I’m thinking about the next few months and what it might bring.
First and foremost, Pesach. It’s coming soon, and if the festival of indigestion wasn’t hard enough already for a vegetarian, I’m now a coeliac vegetarian.
I can’t begin to imagine what gluten-free matzah tastes like.
I’m also somewhat dreading explaining this situation to friends and family at the Seder table.
Many don’t understand that this is not some kind of lifestyle choice.
Believe me, it’s certainly not a choice!
The next thing, is the cricket season.
I love playing cricket, and a fundamental part of it, is teas, and having a drink after the game. The social element.
Teas will now be a thing of the past, and when it comes to socialising after the game, cider is going to become my new best friend, I think.
Perhaps the thing I’m most worried about is going out to restaurants, and going on holidays.
My recent experience of going out to restaurants wasn’t particularly fun.
After I told them I need to know the gluten free options, I had two staff members surrounding me, crossing things off the menu, putting all kinds of flags in my food, and constantly coming over to remind me what I was and wasn’t allowed to eat.
It’s well-meaning, and I understand why they did it given how careful restaurants have to be when it comes to intolerances and allergies.
But it also put me at the centre of unwanted attention; when I can largely manage the condition with common sense.
Don’t eat stuff with gluten.
A lot of restaurants also have QR codes to check items on the menu also, so you can do this more discreetly.
Even recently when I went out with friends, as I arrived they told me they’d looked at the menu for gluten-free options and there were plenty of things.
I don’t really want this. It’s done with the best of intentions but it puts me at the centre of attention, which is the last thing I want.
My recent trip to Dishoom was pretty good, there were lots of options. I also tried to go to Nando's which was.. less good. RIP Nando's for me.
The other concern is going away on holiday.
Last November I went to sunny Marrakech, and I voluntarily ‘glutened’ myself, as I was on holiday.
I thought, why not have what I want, how bad can it be?
It turns out, very bad.
I enjoyed a few days eating what I wanted, before I was beset with the most awful feeling, which I struggle to even describe.
It was a mixture of feeling completely weak and drained of energy, dizzy and disorientated, while experiencing shaking and a rapid heart beat.
These panic attacks combined with 35 degree heat and being in an unfamiliar place (on my own) made it very difficult to get through.
Aside from the physical symptoms, it also ruined my holiday.
I didn't know what I could eat. I was petrified of making it worse and being unable to fly home or needing to see a doctor, so every meal became a game of Russian roulette.
I remember going to breakfast in my Riad, telling them I couldn’t eat bread and they made an omelette for me. Needless to say I was very grateful, and they did the best they could, but even with that, it made me a bit ill.
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