Welcome to the second instalment of Coeliac Superheroes, our monthly spotlight on people living with Coeliac Disease. Last month we spoke to Laura from Coeliac Sisters!

This month we spoke to a young woman who has been very recently diagnosed with Coeliac Disease who graciously shared her experience, challenges and advice for others in a similar situation

Introducing our this months Coeliac Super Hero…

My name is Hayley, I’m an optometrist from Glasgow and I have only recently been diagnosed with coeliac disease in the past few weeks! I am a big foodie, and before my diagnosis I shared an Instagram page with my sister where we reviewed different places to eat. Instead of giving it up, I want to show other coeliacs and people following a gluten-free diet that food can still be enjoyed and we don’t need to restrict ourselves!

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

For the past 2 and a half years, I have had l chronic headaches all day every day. On top of that, I’ve also been fatigued no matter how many hours of sleep I had the night before and feeling weirdly dizzy. I went to the doctors numerous times, each time being dismissed and leaving with a prescription for pain killers. I knew something wasn’t right, so I was very persistent with them. Eventually, the GP admitted they had no idea what was wrong and referred me to a specialist. After I had the appointment with the specialist, I left feeling deflated as he also couldn’t give me an answer but referred me for an MRI as a precaution.

When I got the letter with the results, the MRI was fine (thank goodness) but he had noticed that the blood test I received the year before showed low iron and folate, so wanted me to get tested for coeliac. I thought this was just another precaution, so when I got the letter saying it was confirmed and there was no need for further testing, I was so surprised! Looking back now, I realise so many signs were there that I passed off as normal. For example, itchy bumps on my elbows (dermatitis herpetiformis), feeling bloated all the time and of course the headaches and fatigue. I wonder if it even started when I was younger, since I had visited the doctors a lot as a child with sore stomachs and mouth ulcers, but I guess I’ll never know!

Women recently diagnosed with Coeliac Disease — Hayley was recently diagnosed with Coeliac Disease

You have recently been diagnosed with coeliac disease, describe your experience of living with coeliac disease so far.

At first, I was really upset as I thought it would mean my whole world would be turned upside down. I spent hours and hours searching up food swaps and restaurants and joined loads of Facebook groups. I quickly realised that actually, it wouldn’t be that different as there are so many alternatives for gluten-containing foods and loads of restaurants cater for allergies and coeliacs.

So if I’m honest, after the initial shock and after buying in all the non-gluten alternatives, it hasn’t been that different! Saying that, I am going on holiday in a few weeks, so I’m having to do a lot of research and plan the places I’ll eat when I’m there, whereas before I could be more relaxed about it.

How did you adapt your diet after your diagnosis?

In a sense I am lucky, as the gluten-containing foods I liked before diagnosis have great alternatives, like pasta. I’ve never been a big fan of pastries or sandwiches, so I didn’t have to adapt my lunches or snacks as much. The one thing I’m devastated about is the lack of good gluten-free pizzas! I am a lover of a Neapolitan pizza, and all gluten-free pizzas I’ve come across so far are as flat as a pancake!

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

The hardest part for me was not being able to talk to any doctor about my diagnosis. I was told I needed to get tested for coeliac via a letter, that I had tested positive via a different letter, then that no further testing was required and I should stop eating gluten immediately via another letter! I had no face-to-face communication and I had so many questions that I couldn’t ask. Instead, I had to do my own research but joining Facebook groups and following Instagram pages really helped. One thing about the coeliac community is that everyone is so supportive and willing to help, which has made the process so much easier!

How have your family and friends reacted to your diagnosis? Have they been supportive?

They have been amazing! As soon as I received my diagnosis, my mum was emptying the cupboards and labelling things I could and couldn’t have and looking up recipes. Every time I come home now there’s a new gluten-free treat that she’s bought for me to try! My mum and dad are so supportive and are eating gluten-free foods with me. My friends have also been amazing, by being there to listen to my worries and letting me choose places to eat when we meet up so that I feel comfortable. I’ve been so lucky!

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

One misconception I had myself was that gluten-free alternatives weren’t good, but I was wrong! The pastas I’ve tried have tasted the exact same as the gluten versions, and the breads I’ve tried have been amazing too. So far I’ve tried the warburtons pittas, the M&S tiger rolls and the genius brioche buns, all of which I’d recommend to anyone, even non-coeliacs!

As for others, I’ve had a few comments already from people who don’t understand coeliac and say ‘a little bit of gluten won’t hurt.’ I’ve still not found the exact way to respond to this as I find it hard to get my point across, so I made a post on my food Instagram page to address these common misconceptions.

What are the positives of your diagnosis?

Despite initially thinking my options of food and restaurants would be limited, my diagnosis has actually allowed me to try new foods and make a list of restaurants that I might not have tried otherwise. It’s also allowed me to become part of a lovely supportive online community and connect with other coeliacs!

Would you like to add anything to your story?

You know your body more than anyone, so if you know something isn’t right, stand your ground and be persistent until you’re taken seriously. It’s taken me 2 and a half years to finally get a diagnosis after being dismissed numerous times by the doctors. Had I just given up and not pursued it any further, I may have run into more health complications in the future as a result of undiagnosed coeliac disease.

Can you share any tips for anybody else who has been recently diagnosed with Coeliac Disease?

Join Facebook groups on managing coeliac disease and also on gluten-free options in your area. I’ve joined loads and have had so many of my questions answered and now have a list of places in my area that offer gluten-free options to try. It makes the diagnosis so much less daunting and gives you hope knowing there’s so much choice still out there!