What’s new, coeliac disease? Four years on…

I wish there was an off-switch for autoimmune disease. I mean, your own body attacking itself – what’s that all about? Hundreds of thousands of years of human evolution and we can’t even eat a bagel without our lunatic immune system declaring war on our intestines.

Apparently, most coeliacs’ intestinal walls should be completely healed within four years. Last year, my villi had shown the tiniest amount of growth, after three years of being completely gluten free. This week, I went for my third endoscopy since being diagnosed. As weird as it sounds to say, it was the most enjoyable endoscopy of the three, thanks to the unbelievably lovely endoscopist and the Irish nurse wearing Paddy’s Day glasses and doing pilot-style updates as they reached the “turbulence” at my duodenum.

The fact they were all a gorgeous bunch of humans slightly helped the shitty news to follow.

My gut wall is still not normal, according to the endoscopist who had a look down there. Despite the strictest adherence to a gluten free diet for years, my gut is probably just as bad as it was when I was diagnosed. So what’s next? Refractory coeliac disease, so say the doctors. I have an urgent appointment booked in to go over my biopsy results, but they’ve said the next step is probably steroids to suppress my immune system.

So, what is refractory coeliac disease? I don’t know an awful lot about the condition and I probably didn’t help myself by Googling it (every time I end up on WebMD I’m either pregnant or dead). Basically, it’s when coeliac disease doesn’t respond to a gluten free diet. Coeliac UK describe it as a very rare complication with an increased risk of certain types of cancer – with two types, one that can be treated and one that can’t. From what I’ve read, they don’t know a lot about actually treating it, since only 2-5% of coeliacs have it.

I still don’t know if this is definitely the reason, but I’ve spent years trying to cut out different food groups to work out what else it could be. For years, I gave up cheese – do you know what that kind of deprivation does to a woman? As if living without soft, flakey croissants isn’t miserable enough. There is a light at the end of the tunnel, though – what makes me think it isn’t type 2 refractory coeliac disease (the grim one) is because the primary symptoms are ongoing severe diarrhoea and sudden weight loss, of which I have neither. So, who even knows what’s happening until I get to speak to a doctor next week. But at least I have an answer (ish) now, which is a lot more than I had before.

I’m trying to force myself to think positively, and not go down the spiral of cutting out all major food groups again. Mainly because I am in a pretty serious relationship with cheese right now.

In the meantime, it’d be lovely hear from anyone who’s been in or is currently in the same situation I’m in now. If anyone has successfully treated refractory coeliac disease and has any advice, please do get in touch. I’m more than ready to start growing these elusive little villi back and convince my unhinged immune system to stop the siege on my gut.

Science has already upped its game and miraculously turned beer gluten free (probably bigger than when Jesus turned water into wine), so I have good faith it can help switch off this rampant autoimmune disease. I’ll update the blog when I find out more 🙂