It’s Coeliac Awareness Week this week (11th-17th May 2015, #CoeliacUKAwarenessWeek) and this year Coeliac UK is focusing on improving diagnosis of Coeliac Disease. It still takes an average of 13 years (13 YEARS!) to be diagnosed with Coeliac Disease, and even though approximately 1% of the UK population has it, only 24% of people with the disease are medically diagnosed.*
Part of the reason that it takes so long to diagnose, is that the isolated symptoms can be attributed to many different conditions (e.g. IBS, Crohn’s) and it can take a long time to join the dots.
In my own small way, I want to help spread awareness of the sort of symptoms that can occur when “glutened”, and the impact they can have on day to day life. There are still far too many people who believe Coeliac Disease is about being fussy or faddy!
1. Thinking starts to feel like wading through treacle. I become forgetful, have difficulty focusing on tasks, can’t remember words (I am in my twenties – far from senile!).
2. I get stabby pains in my gut, sometimes painful cramping.
3. Painful bloating, not your common or garden post-dinner food baby. I can blow up like a BALLOON. There are times when I could quite easily pass for being several months pregnant. (I have been offered a seat on the bus before…awks)
4. Yeah, ew. I won’t go into too much detail here, but to quote Johnson of Peep Show, ‘that’s not normal pooing’.
5. Total lack of energy. To the point where it feels a struggle to get out of bed in the morning.
6. Any aches and pains seem magnified.
7. Again, ew, sorry. But yeah, with bloating, comes gas.
8. Low mood follows a glutening like a fug.
9. I tend to get mouth ulcers on the right hand side of my mouth after a glutening (only ever on the right hand side – no idea why).
10. I don’t tend to vomit from a glutening, though I know some coeliacs do…but I do feel queasy and break out in cold sweats after a serious attack.
These symptoms can hang around for a while, and some of them (particularly the mental ones) can be hard to recognise; after a while, anything can start to feel normal. To other people, these symptoms are mostly invisible, and that coupled with the fact that some are pretty embarrassing to discuss, means that a lot can fly under the radar. All of this can come from eating just a speck of gluten. A tiny bit of cross-contamination from using the wrong utensil, or a few crumbs left on a chopping board. Crazy, innit?
For the majority of coeliacs, all of these symptoms can be removed simply by sticking to a gluten free diet. No drugs or operations needed.
If you are having symptoms like these, or know someone else who might be, take a look at Coeliac UK’s new diagnosis quiz** and consider if the reason could potentially be Coeliac Disease.
Symptoms do vary from person to person, so I’d be really interested to hear other’s experiences. Let me know in the comments if any of this sounds familiar!
*Read the full figures and more about Coeliac UK’s campaign here.
**I don’t advocate self-diagnosis via Dr Google/ internet quizzes, but Coeliac UK’s quiz is written by the charity and should hopefully be a stepping stone to get people to go and see their doctor, armed with the facts.
**A ‘glutening’ is what I call the auto-immune reaction that we coeliacs experience after eating gluten.