In Issue 4 of Coeliac Superheroes, Lucy, a passionate foodie based in Leeds, West Yorkshire, shares her story.

Diagnosed with Coeliac Disease in December 2022, Lucy has embraced her gluten-free journey and is here to share her experiences, insights and tips for living well with Coeliac. From finding safe restaurants to enjoying new recipes, Lucy shows us what it means to be a coeliac superhero!

Introducing Lucy!

Hi, my name is Lucy. I am 27 and live in Leeds – West Yorkshire! I was diagnosed with Coeliac Disease in December 2022 and have been Gluten-Free ever since. I love trying new foods, restaurants and recipes! I would even say I’ve tried more new things since diagnosis!

Describe your life prior to your diagnosis.

I am a HUGE foodie and my life revolved around food (*spoiler alert* it still does).

But I constantly felt so ill, all the time. About a year before I was diagnosed as Coeliac, I would think I was going to feel ill either way, so I might as well just stuff my face. I had no idea what it was that was making me feel so poorly.

Constant stomach aches and pains, bloated, gassy, all the toilet related issues and fatigue.

I would write food diary after food diary convincing myself it was one food item after another, going round and round in circles.

How did you find out you had coeliac disease/ Did you suspect it before hand?

I have had stomach issues for as long as I can remember. I suppose I thought it was fairly normal, for me. Finally, in lockdown (2020) I had more time to reflect on my health and realised it wasn’t normal. I went to the doctors for various blood tests and all came back fine. They decided to do one last one just in case. And it came back as ✨abnormal✨. Next came the endoscopy to formally diagnose Coeliac Disease.

What was the most challenging part of the diagnosis process for you and how did you overcome it?

After the abnormal blood test, I was told I could be waiting up to a year for an endoscopy. My doctor advised me to go onto a fully Gluten-Free diet in the meantime, to alleviate the symptoms. I joined GF Facebook pages and did loads of research online, to make sure I knew what I was doing. A few months in, I got a call from the hospital saying they had an appointment for me in 3 weeks time! I had seen, on these pages, that you needed 6 weeks worth of gluten in your system before the endoscopy. I questioned this with the hospital but was told 3 slices of bread a day will be fine… I’m sure you can guess where this is going.

It was not fine… I had to endure a second endoscopy as the first was inconclusive, due to “possibly not enough gluten in the system at time of procedure”.

Moral of the story, make sure you have at least 6 weeks worth of gluten or don’t cut it out till your tests are complete!

How do you handle eating out at restaurants? Where is your favourite place to eat out?

It’s just about asking the right questions. Try not feel like you’re putting people out by asking these questions, if they can’t or won’t answer, it’s probably not the place for you. ( Top Tip – if you’re calling a restaurant before going, and feel a little nervous. Pretend you’re asking on behalf of someone else, it is 100% an anxious/nervous loophole!)

Find out if they provide Gluten-Free options. You can usually see this from their menu/website online.
I then explain I have Coeliac Disease (I’ve found saying Coeliac Disease has a bigger impact than just saying you can’t eat gluten etc).
Then I ask if their Gluten-Free food is prepared in a separate area with separate utensils.
Finally, it’s decision time. Usually, if I get a bad vibe I leave. Go with your gut feeling.

If you’re eating somewhere that does GF and non GF food, there will always be a chance of cross contamination. But it’s deciding whether there’s enough procedures in place to hopefully prevent it.

Favourite UK Chains: Nando’s, Pho, Mowgili, Prezzo, Pizza Express, Pizza Hut, The Lounges, Fat Hippo, Honest Burger, Wagamamas, Cosy Club and Leon’s! So many fab places!

Have you encountered any misconceptions about coeliac disease or the gluten free diet from others? How do you address them?

A lot of people don’t actually know very much about Coeliac Disease or why people choose Gluten-Free diets. The biggest issue I’ve had is people not understanding that literally a single crumb can make Coeliacs incredibly poorly.

I will usually take time to explain how a very small amount of Gluten, will cause a Coeliacs immune system to attack internally. In turn making them feel very poorly and if untreated (in the long run) can lead to life changing complications.

How do you educate friends and family about your dietary needs?

I am super lucky with my friends and family, they have all been super supportive and understanding.

My advice would be, be patient. Most don’t understand the severity until themselves or someone close to them is going through it. It’s a learning curve for everyone.

What tips do you have for traveling while maintaining a gluten-free diet?

Prepare yourself. Check restaurants near where you’re staying. I usually save locations on google maps for each place I visit. Then when I get there I don’t have to worry about finding safe places to eat.

Take snacks everywhere you go – just in case! Also, having a bread cake in your bag never hurts!

Can you share any tips for making the transition to a gluten free lifestyle smoother?

I found going cold turkey the best. I got my diagnosis the week of Christmas. I was pretty stressed as I had left my Christmas shopping till last minute (like I do every single year). So I decided to get Christmas over and done with, make sure I knew what I was and wasn’t allowed to eat and got a week’s worth of shopping. I was then ready (or as ready as I would have ever been) to make the change!

I honestly think if I had tried to go GF the next day, whilst worrying about Christmas and not having any GF food prepared, I maybe wouldn’t have stuck to it like I have. Everyone is different, do what you think will work best for yourself.

Would you like to add anything to your story?

Social media is a godsend. Surround yourself with other Coeliacs and you will never feel alone. Everyone is so kind and supportive. I love seeing recipes and new Gluten-Free finds!