Lifestyle

12 Things Learned From 12 Years of Coeliac Disease

12 Years Gluten Free

At the time of writing, I’ve been a diagnosed coeliac for over 12 years, and at least for me, it’s never been a problem. My attitude towards a gluten free lifestyle is actually one of pleasure. I thoroughly enjoy my day to day life and diet and I’ve never let CD get in the way.

In fact, I very rarely even think about it.

So it really baffles me how I frequently come into contact with fellow Coeliacs – through Facebook Groups and my cafes – who allow gluten sensitivity to become the bane of their existence.

As so, I wanted to share some of my thoughts to hopefully give some of those disgruntled people a fresh perspective. And I must stress this post is all in my own opinion.

I realise that coeliac disease affects people differently, but in my opinion it needn’t affect any of us at all. It’s of my opinion that we’re exceptionally lucky to have one of few disabilities that actually goes away by simply avoiding a certain food.

That might seem like an overly positive viewpoint, but why fight an unwinnable battle when we can simply embrace it instead?

Let me share with you 12 things I’ve learned from over a decade of Coealic Disease, and perhaps I can sway you to my way of thinking. If not, leave a comment and let me know. After all, everyone is entitled to their opinions. But first, here’s mine:

1. Don’t expect people to provide for you

When you set expectations high, you open yourself up to being severely disappointed. But, when you actually expect to be let down, anything above that is a bonus.

What I’m getting at here are the oh-so-common family barbecues and office parties, where there’s a lovely spread of food provided, but none of it is safe for you to eat. When you’ve envisioned this wonderful event and turn up to see that everyone except you is catered for, it can be soul crushing.

But not when you expect it.

Whenever I go to a family do or some sort of party, I always eat before I go. Sure this means I miss out on the food, but I’m really not that bothered when it means I’m staying healthy and, well, full. The same goes for long trips on trains/planes, or days out with friends. I’ll take a packed lunched and carry some fruit & nut bars.

By always expecting to be let down and not catered for, I’m always prepared and never really bothered when I turn up to find a sea of beige cuisine. It becomes a non-problem, and rather than sitting there miserable and hungry, I can go about enjoying the occasion.

2. Don’t be offended when people forget about you

On a similar note, when you turn up to the office party, Christmas lunch or birthday celebration, and are met with nothing but breadcrumbs and pasta salads, you’ll no doubt experience that feeling of being forgotten or left out.

But it’s ok. It’s bound to happen. Your coeliac disease is not going away and it never will, and over the years, you’re going to be left out and forgotten about over and over again.

It’s not worth getting offended over or mad about. We’re in the minority, but we’re not alone. Plenty of people with dietary needs are let down all the time. Muslims. Hindus. Peanut allergy sufferers. Vegans.

And sure, it can really rub salt in the wound to find a choice of vegan foods at the staff shin dig, but again, is it worth getting offended over? As I said previously, if you expect to be let down, you can be prepared and when you are, it’s not a big deal.

Side note: at a family barbecue this weekend, I had a lovely bowlful of homemade risotto before attending. I was full, but throughout the afternoon still picked at bits of BBQ chicken, whilst avoiding the majority breaded dishes.

3. Many people don’t believe Coeliac disease is a thing, and that’s ok

Alright, it’s not OK, but it’s to be expected.

Why is it to be expected? With so many people choosing a gluten free diet, and tabloid newspapers endlessly making light of our medical condition, it’s to be expected that some people are confused and misled.

But it doesn’t matter. That’s on them. Not us. If someone wants to crack a joke, or say “is that actually a thing?”, it doesn’t need to wind us up. There’s still plenty of food for us to eat out there without getting into an argument with some closeminded Daily Mail subscriber.

Side note: Recently I had dinner at a gastropub near my house called The Clog & Billycock. When I asked the Maître d’ if the dish was gluten-free, he replied by asking “are you coeliac?”. I paused for a second thinking “hmm, he’s actually asking if this is just a fad diet”, but when I told him I was, he said “I’ll ensure everything is prepared gluten-free for you and ensure everything is safe.”

There are idiots out there who don’t think Coeliac Disease is a thing, and you’re going to come across them. But there are also people who really care, and really understand your needs.

4. The only thing that matters is that you stay healthy

It can feel embarrassing to ask the waitress to ensure your meal is gluten free, but the alternative (not saying anything) is always worse. Never feel guilty or as though you’re putting people out by asking to ensure your food is gluten free.

Likewise, don’t feel bad about bringing a packed lunch to a catered event and don’t feel bad about wasting that packed lunch if your host surprises you with an array of gluten free foods.

Also, if you do meet one of those aforementioned people who don’t believe CD is a thing, don’t feel bad about leaving their establishment. Or avoiding risky dishes and sticking to steak and veg.

All that matters is that you stay healthy.

5. Always trust your gut

No pun intended, but you’ve gotta trust your gut.

Sometimes you know a food is not GF even when you’ve been told it is.

For instance: Last week I was in a cafe in Exeter, England. They had a range of freshly baked cakes in the display case, so I asked the barista they had any GF cakes, to which he informed me that several of them were. I was suspicious because none of the cakes were labelled gluten free in the display, which is typical of places selling GF food, so I asked him to double check, and in a quick reply he confirmed they definitely were.

So I ordered a small cake and sat down with my coffee. After taking a bite, I knew for sure it wasn’t. It was a regular cake. I could’ve been wrong, but after years of eating GF cakes, this wasn’t right. So, I didn’t continue eating. And the afternoon’s stomach cramps confirmed my gut instinct.

Was the barista in the wrong? Yes. But more importantly, I followed my gut instinct which prevented any further catastrophic damage.

If you’re ever in a position where you’re not sure, or your gut instinct tells you “this food aint safe, buddy!”. Put it down and leave it. If you lose a few pennies in the process, don’t sweat it. Your health is worth it.

6. Don’t get angry about it

This will be a controversial opinion, but I genuinely do not see the benefit in getting angry or upset.

I am an avid follower of stoic philosophy, so maybe that’s why. Or maybe I’m just tired of getting pissed off at people over gluten – whether they’re a chef, friend, barista or family BBQ host.

Even though we have strict laws (at least here in the UK) on food safety, and gluten exposure effects us coeliacs to varying degrees, I count my lucky stars that, at least for me, it does not give me a severe anaphalatic reaction.

As so, when an uninformed barista gives me a cake that makes me sick, or I’m at a party where there’s nothing for me, or I’m on a plane and Emirates (my favourite airline) forget my GF meal (yep, that happened), I don’t let myself get angry about. There’s just no point.

These things happen constantly. At least several times per week. If I let it bother me every time it happens, it’ll knock years off my life with stress.

And after all – as I said in point number one – I always expect to be let down. So I always come prepared with a snack anyway.

7. Go for Naturally GF Foods & Stop relying on mass produced gluten free alternatives

Gluten free alternatives are expensive, and in general, nowhere near as good as the real deal.

Gluten free beers are terrible. Gluten free bread is like cardboard. Gluten free wraps turn to dust in your mouth. Sure it’s gluten free, but when you’re paying so much it’s a massive anticlimax.

We really don’t need them. There are so many good naturally gluten free alternatives there is literally nothing you need to miss in your life.

Cider & wine are often just as cost effective as beer. Rice, potato & corn are a staple used by more than half the world’s population. So why can’t you use them? You can! Stop thinking that you need to have a sandwich for lunch. Or a pizza for dinner. Or cereal for breakfast. You don’t. Half the world doesn’t. If they can eat well without bread, so can you.

There are natural alternatives that don’t break the bank. Just think outside the box! And really, gluten free sandwiches from supermarkets are a depressing idea for lunch.

Side note: For the first 16 years of my life I lived off bread and pasta. It was a massive change to remove these from my diet, but really, not all that difficult. I’ve lived in Asia now for most of the last 6 years and their reliance on rice, veg and meat as oppose to the chips, bread, pasta and pizza we have in England, really changed my perspective on how easy GF food actually is.

Things like curries & risottos are simple, tasty rice-based dishes that can be made in large pots to feed the family for much less than buying pizzas.

8. Go on holiday without stress, gluten free food is everywhere!

In the Coeliac Facebook groups I’m a member of, there are constant posts by people worried about the hotels and destinations they’re travelling to. I can understand the anxiety, but honestly, it baffles me how far people take it. Packing a suitcase of GF bread? Come on!

I have been lucky enough to travel all over the world and gluten has *never* been a problem. I’ve trekked through Nepal’s Himalayas staying with remote families for weeks. I’ve ridden motorbikes extensively through rural Asia staying in backwater hotels. I’ve covered Europe for months on end. And not once has gluten sullied my trip.

Sure, be prepared. That’s a good thing. But don’t fear foreign countries just because of Coealic Disease. Go forth and explore! There’s plentiful gluten free food in every gountry – even Italy!

Side note: In August just fone I spent 2 weeks hiking 300km of the South West Coastal path in Cornwall, England, and again, not once was eating a problem. I carried backup food in my backpack, and when I arrived at a rural B&B with no nearby restaurant or a terrible local pub with only breaded dishes, I fell back on my own food supply. Along with a pint of lovely Cornish cider. Or I ate steak and veg, with no chips and extra veg. Or potatoes.

Sure, at some points the food really was a bit boring. You can only eat so many Nakd Bars. But did I let it ruin my trip? Heck no! It’s just some food and I know I’m lucky to have it.

9. Never give in. Ever.

Imagine this: You’ve just walked for 8 hours across Dartmoor in the pouring rain. It rained so hard your phone broke, your shoes are sodden, you’re exhausted and all you want is a nice home cooked meal. But when you get to you raccommodation for the night, the only thing on the menu is pizza orr pasta. (this just happened to me).

Or, you’ve worked hard all year and after a 9 hour flight you arrive in Mexico ready for your 2 week summer break. A Corona with lime is the *perfect* way to hit the beach. You desrve it.

It’s only one meal or one beer, right? No! Don’t do it.

That moment of satisfaction, that irridencenst glow of the food & drink you know you love – it’s not worth the next 3 days of lavatory torment – and it never will be.

I often hear Coealics (particularly newly diagnosed folk) saying things like “i cheated”, “I couldn’t help it” or “I needed to treat myself one last time”.

Every time you give in, you’re causing yourself more damage, which hurts you more in the long term. It’s not worth giving in, and it never will be.

Don’t fight your CD, embrace it and move on.

10. Oh, and Stop going on about it

Seriously, nobody wants to hear about your dietary restrictions. No one wants to know about the crippling diahhorea. Nobody wants to know about how unfair it is that gluten free food is so expensive.

I’m sorry to say it, but they don’t.

They don’t care, and it makes you sound like a dick. It makes us all sound like dicks and its one of the reasons people look down at us.

Recent surveys have shown that over 40% of people would be reluctant to date people on gluten free diets., claiming that they think we’re “high-maintenance”, “selfish” and “arrogant”.

Seriously, we have a bad rep, so don’t go on about it.

11. It’s what you make of it

There are so many people out there far worse off than us. People bound to wheelchairs. Blindness. Deafness.

My mum has a severe allergy to chillies and peppers, to the point she’s almost died on me once.

We hear in the news of peanut allergy sufferers dying because Pret A Manger contaminated their food. When people contaminate our food, pretty much the worst that happens is stomach crams and the squits.

I’m not saying it’s pleasant. But we’re alive, and all we need to do is avoid some pesky grains. We can do this. It’s easy. And we’re not going to drop to the floor and die.

I ask myself would I rather have a peanut allergy or coeliac, and every time the answer is coealic.

12. Education is Key

I’m often quite amazed at the questions people ask in regards to gluten content in food. In the Facebook groups, people are always posting photos of ingredient lists, asking whether it’s safe to eat.

Now, I do applaud these people on one hand for taking care of themselves, for fact checking and ensuring their food is safe. That is the most important thing.

On the other hand, though, Coelic Disease is mostly very simple and reading an ingredient list (at least in the UK), don’t require a degree. Gluten ingredients are bolded.

With that said, there are some things you should learn – mostly in regards to food – which will help keep you safe.

Things like:

  • Beurre blanc sauces – did you know most sauces start out as a “Beurre blanc”, which is thickened with flour? That’s why most steak sauces (peppercorn, stilton etc) are not gluten free.
  • Thickening sauces – restaurant sauces in general are often thickened with gluten. Don’t just assume your sauce is safe.
  • Cross contamination in farming & food production – farmers and food manufacturers often use the same equipment to process both gluten and non-gluten containing ingredients. This results in cross-contamination of the non-gluten ingredients, making them unsafe for us to eat.
  • Using separate toasters and food handling equipment – did you know that using the same cake tongs or toaster could put gluten crumbs on your GF food?
  • Why fried foods are often contaminated – most restaurants don’t have separate friers for gluten free food, which means your food is being cooked in the same oil which just cooked some breaded chicken. Now your food isn’t safe.
  • “certified gluten free” goods, like vodka can actually contain a small amount of gluten (typically 20ppm). So this means they actually have small amounts of gluten in them.
  • The fact that most alcohols commonly labelled gluten free (like gin, vodka etc) are actually made from wheat based alcohol and therefore places like America don’t allow them to be labelled safe.

Ps. most vodka is made from wheat before you tell me it’s made from potato.

But the point here being: the more you learn about what goes into food and how food is made, the better prepared you are for keeping yourself safe.

Adam McIntyre
Hi, I'm Adam. I've been a diagnosed Coeliac for over a decade. I love to travel, eat out and party with friends, and I never let gluten get in the way!
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