Monday, 20 November 2017

The Hard Parts of being a Coeliac No One tells you about!

Having been diagnosed for almost 7 years now I would like to say I am fairly well adjusted, but there are always new challenges and things that happen that really make you want to scream at the top of your lungs!

Everyone tells you it will get better and it does believe me, you get a handle on the diet, the cross contamination and all the basic rules. BUT no one tells you about all the unknowns and the obstacles people put in your way that make it that much more difficult to be safe. That is such a funny way to put it isn't it, to avoid being 'Glutened', is it safe or stay safe.

I have not been doing to well recently, losing a lot of weight, feeling lethargic and generally feeling like I have been 'Glutened' most of the time. For which the Hospital are giving me another endoscopy, what fun hey. Anyway this has lead me to think about other things such as make-up, which to be honest I have never really thought was an issue before.

I love to wear lipstick and never really thought about it but when you eat, some of the lipstick does come off onto your food and therefore you are digesting that. So it is actually important for it to be Gluten Free. Thankfully though I did find out that Too Faced Melted Matte Lipsticks are formulated without gluten, woopie!!!

Don't worry I am getting to my point here. I have found that when discussing this subject with people they have often mocked me or just simply dismissed me as a complete idiot. Like whatever are you on about, Gluten Free lipstick?!?!?!  This is just one example of dismissal I have received over the years, I have a serious auto-immune disease that actually requires me to take ridiculous precautions such as this!

You find that many people are very ignorant to our disease, it can be ever so frustrating. I still get it now where people automatically say 'owh so like an allergy to wheat'. You just want to pull your hair out and scream NO!!!!! When half the time it is just easier to reply yes.

Earlier this year I did have a little meltdown before I went away for my Mum's hen weekend away in Valencia. I had not been away abroad since being diagnosed, so it was a pretty daunting experience for me. I have been away to America, but they are so much better equipped than us, so I don't even count that as 'abroad'. When we got out there and I was armed with my translation cards, I felt much better. We found a few restaurants and even Macdonalds was way better than the UK!

The thing that struck me was the fact that I didn't find I had much support or understanding about what I was going through. I knew we weren't going to a 3rd world country, but it was still an extremely scary thing for me to be doing.

A great issue I have yet to find an easy get around for is a shared office kitchen! I know this is not something the great majority of the population thinks about and a lot of people moan about the state of their office kitchen, but for us coeliacs it is a much bigger concern. Crumbs all over the side spreading everywhere, food splattered in every orifice of the microwave and the dreaded CAKE DAYS!!!

You have to think about every little thing, and quickly become the office Nazi, mostly due to ignorance of our disease. It's not like I am being overly OCD or anal just because I feel like being a twat, I genuinely have to be overly cautious. Cleaning the side before I use it every time, re-cleaning clean cutlery. I won't even use the tea towel provided, just because I don't know what it has been used for, so use the paper towels.

I even panic on cake days, even if someone has been kind enough o think of me, when everyone dives into the cakes it goes everywhere and there is no guarantee that my specially bought stuff is now not contaminated. Then you worry about explaining that, because you just get dumbfounded looks like you're being overly dramatic.

Somedays you do just really hate being a Coeliac and let me tell you it is okay to say that. You are not the only one, trust me on that!

Always be kind, you never know what personal battle people are fighting.


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