I remember the day the new symptoms started. Intense stomach cramps. Bloating. Diarrhoea. Just before entering the theatre to see Six the Musical for the first time. Classic, right? This was back in February. I assumed I had a sickness bug, popped some pills, and carried on with my day.
The months went by. I became more and more ill. More weight loss. I was going to the toilet 10 times a day. But there's a stigma around toileting; especially if you're a woman. So I told no one, and told myself it would go by itself. I then saw my PoTS consultant, who told me I needed to be seen urgently.
I won't go into the details, but after emergency tests, procedures and appointments - I am gluten intolerant. And have been gluten-free for 4 weeks today. Happy anniversary, to me! Although, it's not so happy. Because guess who's been "glutened" today? Me.
Being "glutened" is when you accidentally consume gluten (quite self-explanatory!). Except it wasn't me. It was another chain restaurant. In my first month, I've only eaten food that I've not watched be cooked twice - and both times I've been severely ill after.
And I'm so frustrated. I'm frustrated that restaurants claim food is "gluten-free", but aren't careful of cross contamination. I'm frustrated that just after my body has settled after over half a year of being painfully ill, I'm back to square one. I'm frustrated that in a 20-aisle-supermarket, only a third of one of those aisles is gluten-free. I'm frustrated that my food bill has doubled because gluten-free food is so much more expensive. I'm frustrated that there are so many vegan and vegetarian options available, but gluten-free choices are so limited. This isn't a choice.
I'm frustrated that I'm now sat on a toilet sobbing because false promises were made about what I was eating (Frankie and Benny's Harlow - I'm looking at you!).
I've been absent from my blog, and my YouTube for several months now because I have just been so ill. Taking 5 Imodium just so I can leave the house for a few hours. This diagnosis has just sucked the life from me. And I am so incredibly drained. For the first time in months, the past few weeks have been better. I've started to feel like myself.
And then I'm "glutened". And I can't tell you how frustrating it is. To know I'll be on the toilet for the next few days. To know the pain will bring me to tears for the next few days. This month has been really difficult, and I've spoke to many people like myself who say that the first few months are the hardest.
Did you know that there's wheat in crisps? In gravy? In cooking sauces? In stuffing? In pastry? In chicken nuggets? In roast potatoes? In condiments? In cheap sausages? In virtually 90% of supermarket foods. When I was diagnosed, I honestly thought it would just be bread, cakes, pizza and pasta. How naïve of me. Next time you're at the supermarket, look at the labels - you'd be surprised.
But when you're already struggling with a diagnosis, and eating out is already extremely limited, being "glutened" is so hard. Especially when you're not close to home! Let me tell you, that was a fun 20 minute journey home...
So if I don't seem myself, or I'm not as upbeat as usual, or I'm virtually non-existent on social media (I have been for months - sorry!) - please be patient with me. This is another massive transition period for me. Especially finding food that helps with my PoTS as well. My body feels like a minefield at the moment; ready to explode at the smallest of triggers.
But for now, I'll snuggle up to my hot water bottle, pop some painkillers, and wait for the pain to subside. You think I'd be used to chronic pain, what with my history - but it never does get any easier.
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