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Wednesday, June 8, 2016

A Letter from Your Token Coeliac

A Letter from Your Token Coeliac - What It's Like to Have Coeliac Disease - How to Explain Coeliac Disease to Friends and Family

Dear friend/family/stranger/cafe owner/person who's giving my lunch the third degree

Hello. First of all, I want to say that whilst I do have coeliac disease, I'm not coeliac disease; there's more to me than the fact my wonky gut that has declared war on a teeny tiny little protein - though it does make a huge impact on my life. 

I wanted to write to you to explain, because I know whilst you probably think you know coeliac disease, it can be a little bit confusing. In fact, it can be down right weird. 

I get it. I know you think I'm being pedantic because I have my own toaster or because I grill the waiter way more than my medium rare steak - maybe you think I'm down right crazy because I haven't taken up your offer to see a hypnotist.... but let me explain. 

You see, I don't mean to offend you when I don't eat your food, ask a million questions or sit there and eat nothing whilst you enjoy your delicious lunch. 

I'm not trying to be pedantic when I won't cut my sandwich with the same knife you used to cut yours or spread peanut butter on my toast from the same jar you dip into and out of when spreading your deliciously soft "regular" bread. 

I'm just trying to be safe. 

You see, whilst it may be trendy to be gluten free or have fussy food needs, I don't have a choice. 

Coeliac disease is a disease. It's not something I asked for and it's certainly not something I want - but thanks to a couple of little genes in my DNA, it's something I have to live with forever. 

There's no cure for coeliac disease and there's only one treatment; a strict gluten free diet. 

Yep, strict. Because whilst you may think that little piece of cake won't hurt and whilst you may think I'm silly for fussing about cross contamination, all it takes is one tiny little bit to send my body into attack mode. 

Coeliac disease is way more than a tummy ache. It's not about bloating or frantic toilet trips. It's not about weight gain or weight loss. What might look like fussiness or OCD to you is actually just me trying to protect my body. 

You see, whether I feel it or not, every time I ingest the tiniest bit of gluten (it only takes cross contamination or a crumb), my body goes into attack. It rolls out the army tanks, it rounds up its soldiers and goes after that gluten protein that your body welcomes with open arms. 

And you see, because apparently the only thing tough enough to kick my butt is me, my immune system goes berserk. It keeps on attacking and actually ends up attacking the bits I need. You see, inside your stomach you've got these tiny little finger looking things. They're called villi and they're what absorb all of the nutrients from your food. 

When they've been flattened by my immune systems army tank, they can't do that. 

Instead the damage causes my body to go into meltdown mode. I stop absorbing nutrients, I start to feel really woeful and my life pretty much sucks. Regardless of what my symptoms are on the outside, the inside is pretty brutal and "just a little bit" of gluten leaves me at risk of getting other conditions as well as suffering from nutrient deficiencies and all that fun stuff. 

All I'm trying to say is, I just want you to understand. 

I want you to understand that a gluten free diet is way more than a trend for someone with coeliac disease.

I want you to understand that I don't want to have to miss out on delicious food. 

I want you to understand that whilst it may feel awkward for you, I'm probably feeling 100x worse. 

I want you to understand how much it hurts to miss out. 

And I want you to understand that I need your support. 

Please don't ridicule me or make jokes and please, please, please don't try to feed my gluten to test my reaction. 
Please don't get offended if I decline your offer to make me food (I'm probably trying to save you the hassle whilst also protecting myself) or ask a million questions when you do. 

And whatever you do?
Please don't avoid inviting me to things because I can't eat anything. Whilst I can't eat the food, I still need the friendship. 

Yours truly, 
Your token coeliac. 


Now I'd love to know; 
If you're a coeliac, what are some things you'd like your friends/family/colleagues etc to know?
And if you're not a coeliac, do you have a "token coeliac" in your life?


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