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Why coeliac disease can be so tiring

I'll be honest. Being coeliac can be pretty draining, to say the least. I've been noticing a few things these last few weeks. Did I say weeks? I meant months. Maybe years. Who knows? It all seems a little blurry.

Let me be clear. I don't mean the lead up to diagnosis and the following recovery (which is a different type of fatigue). I mean the everyday reality of making sure you don't eat gluten.

Coeliac fatigue
Why am I so tired all the time?

When I lived alone, I didn't really notice how much effort I put into examining food. I only had to think about myself. Fast-forward to having a family with a husband and two children and things are very different.

We have a gluten-free kitchen, which should make things super-easy. The truth? It does when we're at home but getting the food to the house is another issue. A supermarket trip means scanning ingredients twice-over for allergens or the dreaded 'may contain' warning. It takes twice as long to get anything into the trolley (apart from the really obvious stuff like bananas). The should-be-obvious stuff (like rice) is less reliable. Just look at a label and you'll see what I mean. Some of the plain rice packs I pick up have a 'may contain wheat' warning (see evidence below).

Then there are days like today where I ended up in a café with two small people needing a snack and a sign telling me not to consume my own food. The only gluten-free thing they had left was a packet of ready salted crisps. "We're having delivery issues," said the woman at the counter. "Normally we'd have Pom Bears."

There are other times when people say they'll provide food for you. Either they'll kindly go to immense trouble, which often involves phoning you time and again to check ingredients ("can you have whey?" etc...) or when you get there, you'll see them cross-contaminating, like serving your gluten-free dish with a spoon they've just had in some wheat pasta.

I saw a joke recently with a picture of people on a tartan blanket on the grass in the sunshine. "Being a coeliac is like going on a picnic!" it read. "Literally. You always have to take your food with you."

And that's what it is: constantly having to be prepared for places not to cater for you. Either you risk going hungry or you have to have a handbag large enough to carry a stash of crackers and snack bars, which sometimes have to serve as a meal.

It may not seem like much. I'm always grateful to be well. But this constant focus on food day after day, month after month, year after year, can take its toll.

So if you know a coeliac who's having a tough day, give them a pat on the back and tell them how well they're doing. They'll be grateful for the empathy. That and a box of their favourite gluten-free chocs. (*coughs* Bendicks)

Are you a struggling coeliac? Share your story - I'd love to hear from you.



Hi! Great to have you here...

My name's Ali and I help people on gluten-free diets have a better, easier and healthier lifestyle. 

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