Coeliac diagnosis – Coeliac Man’s story and top tips

Cartoon image of superhero Coeliac Man with a text title

To celebrate Coeliac Awareness Week, I’m sharing my diagnosis story, and my top tips for those of you who are newly diagnosed!

Being diagnosed with coeliac disease can be pretty scary. Or at least, I imagine it can be. Of course, I was fairly oblivious to the whole diagnosis process seeing as I was only a tiny superhero in the making at the time, and only really showed any signs of dissent when a doctor shoved a small camera down my unsuspecting throat for the biopsy. I’m reliably informed that I proceeded to scream the entire hospital down, in what I can only assume was my attempt to politely ask the doctor what on earth he thought he was doing. I don’t think it’s the most precious memory my parents hold close to their hearts when remembering my childhood, but I managed to avoid any mental scarring being far too small to remember the whole experience.

I understand that coeliac diagnosis is even more traumatic when you’re old enough to know what’s going on. The process hasn’t changed much over the years, with a blood test and biopsy generally needing to be carried out, while still eating gluten, to receive cast-iron proof of coeliac disease. (Although there could be good news on the horizon as Coeliac UK funded research is currently looking into a test that is accurate even when gluten has been removed from the diet, and without needing a biopsy).

If you’re getting tested for coeliac disease then chances are you’re suffering from some kind of adverse reaction when you eat gluten, so having to carry on poisoning yourself with the big G while you get tested probably isn’t ideal. I always feel like I was lucky to be diagnosed so early on in life. As being coeliac is all I’ve ever known, I never had to go through the adjustment period. Saying goodbye to all the gluten-filled treats you’ve been enjoying your whole life is probably quite a struggle. No matter how hard free from companies try, I’m told that gluten free bread just never quite tastes the same as normal people bread. To me however, gluten free bread is just what bread tastes like! So, I’ve definitely been lucky in that respect.

Despite having to say goodbye to gluten, the good news is that once you’re diagnosed with coeliac disease you should start to see your health pick up, so long as you stick to the gluten free diet anyway. It may seem a little daunting at first but that’s where your friendly neighbourhood Coeliac Man comes in. I’ve got literally decades of experience of living with this thing so hopefully I know a few tricks of the trade to share with you.

First things first, and at the risk of sounding like Corporal Jones from Dad’s Army…

Don’t panic!

A nice, modern reference for you all there (ask your parents if you’re wondering what I’m talking about). But Jonesy is right. This is no time to panic. For starters you couldn’t have been diagnosed at a better time. Having lived with coeliac disease for basically my entire time on earth, trust me when I tell you that us gluten dodgers have never had it so good. I remember a time when if you asked in a restaurant if something was gluten free, you’d be met with the same sort of look as if you’d just tried to order a deep-fried coffee. (It says something that this is the most ridiculous menu item I could think of and, according to the internet, it turns out to actually be a thing. God bless you America.) It was a time when you couldn’t simply stroll into a supermarket to buy a loaf of gluten free bread. A time when I had never eaten a doughnut. I know, it’s almost too terrible to imagine.

Thankfully these days are over. There are now tonnes of restaurants that are accredited by Coeliac UK, meaning you can eat there with peace of mind that they’re clued up on gluten free and cross contamination. We also often get a whole aisle of free from products in the big supermarkets. It’s surely only a matter of time before free from aisles get so big that supermarkets give up fighting it and succumb to the inevitable coeliac revolution and give us the whole place to ourselves. We can only hope.

Focus on what you can eat, not what you can’t

I realise this one sounds a bit like it should be on some kind of cheesy inspirational poster with a photograph of a sunset, but I think the message holds up. While it’s true that being diagnosed with coeliac disease means saying goodbye to lots of foods that you used to enjoy, it’s also true that there’s still so much you can eat.

All meat, fish, vegetables, potatoes, rice, pulses, eggs and fruit are naturally gluten free, so you’ve got plenty of staples to keep you going during those initial few hazy days when everything may seem scary and overwhelming. Then, once you’re ready to branch out into the world of free from products, basically everything you assume you can never eat again exists somewhere in gluten free, coeliac-friendly form. From crumpets to croissants, pizza to pancakes and beer to biscuits, there’s a whole world of gluten free alternatives to uncover.

Get comfortable reading ingredients

Despite the generally excellent range of free from products now available in supermarkets, unfortunately if you were to do your entire week’s shop purely in the free from aisle your money would not last long. You’d also no doubt come home with an obscene amount of chocolate brownies. Instead, you’re going to want to join the ranks of the gluten detectives, sniffing out those ‘hidden’ gluten free products lurking among all of the normal people food. You’ve probably seen us standing in the aisles, reading through the miniscule ingredients lists then fist pumping when we realise it’s something we can eat. It may seem embarrassing at first, but trust me, there’s no better feeling than finding a product you totally didn’t think you could eat turns out to be gluten free.

The world of food labelling can be pretty complicated, but for us gluten dodgers it’s fairly simple. For starters, and at the risk of stating the blindingly obvious, if something is labelled ‘gluten free’ then you’re good to go! The term ‘gluten free’ is certified by the actual law and means that the product must contain 20 parts per million (ppm) or less of gluten, basically meaning it’s safe for people with coeliac disease. The crossed grain symbol appearing on packaging is also a sure-fire way of knowing that something is gluten free.

If it doesn’t say ‘gluten free’ and there’s no crossed grain symbol that doesn’t necessarily mean we can’t eat it though. This is where your detective skills will need to come in. The key thing to look out for is any of the big nasty gluten grains of doom on the ingredients list: wheat, rye, barley, oats, spelt. If none of these big nasties are listed, and there’s no kind of ‘may contain’ warning, then you’re good to go!

If you’re unsure about anything then the good people over at Coeliac UK have a handy food checker app that allows you to scan products to check if they’re safe, along with a dedicated helpline staffed by dieticians and food experts that you can call for advice if you get stuck.

Join the community

Despite coeliac disease being not ideal at times, thankfully you don’t have to fight this thing alone. With an estimated 1 in 100 people in the UK being diagnosed, chances are you already know a fellow coeliac. And if you don’t, there’s plenty of people out there so you can totally go and make yourselves some new gluten free buddies!

There’s a thriving gluten free community on Instagram which is perfect for stealing meal inspiration and tips from. I’ve also made some actual friends on there and we’ve met up for gluten free meals out. It’s so good to not feel like the awkward one at the table, seeing as we’re all awkward. It’s also great to have likeminded people who you can just chat to honestly knowing you’re not going to be judged.

Joining Coeliac UK, the UK’s independent charity for people living gluten free, as a member is also a great place to start when you’re newly diagnosed. Having been diagnosed with coeliac disease when I was a baby, Coeliac UK has been a big part of my life for as long as I can remember. I know they were a huge help to my parents when I was first diagnosed, giving them the support they needed to nurture me from a small vomiting baby into a normal happy chappy.

Receiving the Coeliac UK gluten free food guide each year was an invaluable resource growing up. I fondly remember browsing through the hefty book for hours when I was a kid and picking out products I’d like to try. Everyone needs a hobby, right? Bearing in mind this was the pre-internet age it really was the only way of researching gluten free products from home and that alone was worth the membership fee. They’ve moved with the times and now offer food checker and venue guide apps, along with the aforementioned helpline, a magazine, and regular local events and food fairs. It’s well worth joining up.


So there you have it! My top tips for those newly diagnosed with coeliac disease. For lots more support and information, be sure to check out the Coeliac UK website.

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