Wednesday, 24 June 2015

Coeliac Disease

I have recently been diagnosed with coeliac disease. Sounds awful because "disease" equals "ew!" But it's not that bad, all things considered.

It started with an awful feeling in my throat - as if something was stuck or someone permanently had their hands around my throat. This was November 2014. I figured it was probably just tonsillitis or stress. Though I didn't particularly feel stressed, my first solo book was coming out (Shuttered, published by Dreamspinner Press) and I was buying my very first home.

I'm not one for making a fuss or going to see a doctor. It got to March before I finally thought this feeling isn't right.

The doctor thought it was acid reflux, despite me having zero other symptoms of that, and put me on Omeprazole. She also thought maybe my thyroid felt a little enlarged so off I went to the hospital to have an ultrasound scan. I also had blood tests.

Tablets did nothing. Scan came back normal. Bloods were fine except... I was anaemic.

Because I'm female, doctors instantly think anaemia has something to do with your menstrual cycle. I told the doc there was nothing wrong with me in that respect, thank you very much, and was just told to eat more iron in my diet. I don't eat a lot of meat, so I figured, ok that probably is the reason.

I upped my iron intake and started taking Spatone iron supplements. Back for a blood test and my iron levels had dropped.

I was put on a three month course of iron tablets - ferrous fumerate. I was also sent back to the hospital for an endoscopy to see why my body wasn't absorbing iron properly.

Now, let me tell you about the endoscopy. I find it difficult to swallow tablets and I have a very sensitive gag reflex. However, I'd read so much about how the endoscopy is easy and you don't feel a thing, that I figured I'd go in there, have no sedation, and just get on with it. Even when I was sitting in the waiting room, after I'd been tagged and weighed, and a young woman came in all red-faced with streaming eyes, I thought it'll be easy.

So in I went, no sedation. The nurse sprayed my throat with numbing spray, which despite burning and then making you feel like your throat's closed up, really does nothing. It was pretty horrific. Lots of gagging involved. Your instinct is to push the nurse away but you can't so they just hold your hand tight. The nurses were all lovely actually.

They take biopsies from your small intestines and then send you on your way.

A few days later, I got a letter. I have coeliac disease and must go gluten free straight away.

Coeliac disease is an autoimmune disorder. It's not an allergy or an intolerance. Basically my immune system is so nuts (I also have hayfever - pollen is a threat! destroy! destroy!) that it goes into overdrive when I eat gluten and damages the lining of my small intestines, meaning I then can't absorb nutrients properly.

There's no cure, but sticking to a strict gluten-free diet will help my body heal and prevent the long-term consequences of the disease (of which there are many grim ones, including cancer).

Now, I didn't get many of the symptoms of CD. No toilet trouble, pain or farting! I was (still am at the moment, I'm very early into my new GF lifestyle) horribly tired. To the point of almost falling asleep at my desk at work. I've got what I call 'an old lady hip' which could be a symptom (I have to go back to hospital to have a DEXA scan on my bones!) and I had rashes on my arms, which I always put down to eczema.

If I think about it now, it was silly to think the tiredness and achy bones was just me getting old! I'm only in my early thirties. I'm hoping my dodgy memory will improve too.

Going gluten-free, so far, has been... okay. I realised yesterday that I'd never get to eat Ferrero Rocher again. GF food is much, much more expensive than "normal" food, and it's half the size. I had to buy toaster bags and separate butter to use in the office at work, because I have to be aware of cross-contamination. No gluteny crumbs in my butter, please!

I do, however, get food on prescription now. But it's "staple" food like bread and pasta and not, unfortunately, biscuits and Ferrero Rochers.


So there we are! I'm diseased. But looking forward to feeling young again, hopefully very soon.

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