From the 13th – 19th May, Coeliac UK will be running their Coeliac Awareness Week for 2019. This week offers the chance for people diagnosed with the disease to share their story and connect with other sufferers as well as educating people who don’t know what Coeliac Disease is with the aim of potentially helping people get a diagnosis if they haven’t already.
The theme this year is ‘Is It Coeliac Disease?’ which has been designed to help people assess whether they could be suffering from Coeliac Disease and whether they need to get checked for it. Coeliac UK has created an online assessment that anyone can take for free which uses a few simple questions to help you decide whether a trip to the GPs to discuss testing for Coeliac Disease is required.
The assessment can’t tell you whether you have Coeliac Disease but it can help you decide whether this autoimmune disease is a possible cause of problems you’re experiencing. It is quick and simple to take and could be the start of your official diagnosis if you are suffering and didn’t realise.
As part of Coeliac Awareness Week, I thought I’d share my diagnosis story as I do get asked this quite a lot and mine was a little different to the standard, so it might be of interest.
I was finally diagnosed a couple of months before my 18th birthday (mid-2017) but I had started wondering whether gluten caused me a problem back in early 2016. I felt sick a lot, ended up with what seemed like IBS a lot, I was bloated, tired and just generally thought something I was eating was causing me an issue.
Gluten seemed like the best place to start as I knew a lot of people had issues with carbs and my mum suggested it might be some kind of intolerance, so in 2016 I made a half-hearted attempt to cut gluten out.
I started eating gluten-free pasta and bread and started checking the packets but I’ll be honest, I wasn’t very good. I remember picking a thin crust pizza on the basis that there’d be less gluten in it… I know!
I went to the doctors after a couple of months of kind of trying to avoid gluten and got told I had Bulimia. I did suffer from an eating disorder and because of that, they pinned my digestion problems down to my mental issues with food but it turns out… I didn’t have Bulimia either.
Because she’d told me that though, I started eating gluten again and I remember going on holiday a couple of months after this trip to the GP and eating pizza, pasta and all sorts and just feeling awful all holiday.
Now time loses me at this point because it was another year before I got diagnosed and I don’t really remember what happened in the middle but I seem to think I carried on eating gluten but didn’t eat bread because it made me feel gross!
I do remember eating a subway when I had a hangover in December 2016, so around 6 months before diagnosis and being so ill. I assumed I’d be ok because I was fine with gluten apparently but I was so incredibly unwell.
These IBS like attacks kept happening and it seemed totally random. I remember having one after eating a flapjack and one after eating a pack of BBQ hula hoops, both of which I now know are a no go for Coeliacs.
Eventually, I got fed up of feeling ill and not understanding why, so decided to push for the Coeliac test again, after being refused it the year before and being told I had Bulimia. My GP still wasn’t convinced and said she was pretty sure I had IBS but she’d put me through for a load of blood tests, including Coeliac Disease to rule everything else out and then she could diagnose IBS.
Slight problem with that plan – I did have Coeliac Disease. My tests came back over a month later (they lost my results once) and the test spoke for itself, they showed signs of Coeliac Disease.
I was told to go on a gluten-free diet and was referred to see a consultant about an endoscopy. Another twist in my diagnosis story – my GP told me the camera was a colonoscopy, so up the back passage and not down your throat. I had accepted I would have this and prepared myself.
When I finally saw the consultant in November, so nearly 6 months later, he revealed that the camera was, in fact, going to have to go down my throat and I freaked out. I have always had a horrific fear of being sick and I just could not go through with an endoscopy. I cried to my consultant and he saw how scared I was, so he said he’d re-do my blood tests and if they still showed apparent signs of Coeliac Disease, he would be happy to officially diagnose me off that.
I went for the blood tests and the results came back showing Coeliac Disease again, so he wrote me an official letter with my diagnosis on it. I was then referred to a dietician and still have yearly dietician appointments now.
I am too young to qualify for DEXA scans but do have annual blood tests through my GP, checking all my different levels, so despite now having the endoscopy, I still get all the relevant Coeliac Disease aftercare as I was officially diagnosed.
It is rare to be able to get an official diagnosis without endoscopy and it is recommended you have it done for complete confirmation but in special circumstances, which is what mine was considered to be, you can get an official diagnosis without.
So, that’s how it all happened for me. That’s how I was finally diagnosed with Coeliac Disease after 18 months of pointing out to GPs that something wasn’t right. There wasn’t anything like the ‘Is It Coeliac Disease?’ online assessment available when I was wondering whether it could be, so I think this new resource is amazing!
If you have any inkling that Coeliac Disease might be the cause of the problems you’re experiencing then please take the assessment and get a better idea as to whether you need to look into this further!
How did you get diagnosed with Coeliac Disease? Let me know your diagnosis story in the comments or let me know on Twitter!