In the last few years, awareness around coeliac disease has increased immensely. Although nowadays there’s a better understanding about the condition and there are more gluten-free products being introduced into the market than ever before, there’s still a long path ahead. According to Coeliac UK, the autoimmune disease affects an average of 1 in every 100 people in the UK and around 70% of these are clinically undiagnosed. Many of those who know about their condition find it difficult to socialise, eat out, travel and struggle to their favourite products in the gluten-free aisle.
This week to celebrate Coeliac Awareness Week (10th - 16th May) we’ve chatted to 2 coeliac influencers about what it’s like to live with this health issue.
1. Tell us a bit about yourself
Cate @CoeliacTeenager - My name is Cate. I am 20 years old, I am a coeliac Instagrammer and Youtuber from just outside of London. I work as a teaching assistant in a school and I spend my weekends going to different restaurants and going on adventures with my friends!
Laura @bristolglutenfree - My name is Laura, I’m 31, live in Bristol (originally from Northern Ireland) and work at the local Bristol Hospitals Charity. My hobbies pretty much revolve around going out for food and drinks, holidaying, time with family and friends and we’re currently renovating our first home. I run my own gluten free food page and love connecting with fellow foodies on that!
2. When were you diagnosed with coeliac disease? What led to your diagnosis?
C - I was diagnosed at 8 years old due to my parents noticing a change in my usual behaviour. This was excessive tiredness and lots of stomach upsets.
L - Following a two week trip to Japan back in 2016, as on the final day I noticed a significant amount of hair loss (later diagnosed as alopecia areata). This triggered a long series of appointments with my local GP and external health advisors where I then found out the alopecia may have been caused as my body reacted to gluten within my system due to my intolerance.
3. How did you feel after being diagnosed with coeliac disease?
C - After being diagnosed my parents saw my usual behaviours coming back and I became that lively child again! To this day I rarely have any issues.
L - Having had a sensitive tummy for years and ongoing issues when I ever ate gluten products, I felt relieved to have been given a diagnosis as I was then able to get back to a level of control which would in turn ensure I could stay healthy. During University I went to my local Doctor a few times as I believed I couldn’t tolerate gluten, but never got anywhere with a diagnosis so it felt like a long time coming. Post-diagnosis there wasn’t a huge amount of support available so it did feel a little overwhelming trying to learn how to navigate this new dietary restriction, but as I soon learnt, it is doable!
4. What resources helped you when you were first diagnosed with coeliac disease?
C - Mainly my family. I was diagnosed when coeliac wasn’t that known but I already had two cousins with coeliac at this point (Now 10 of my family have it!). They helped us to understand coeliac and how to buy the right foods, etc. There wasn’t a tone of support when I was diagnosed as it wasn’t as known as it is nowadays. However the Coeliac UK website was a big support and offered really good tools that I still use now!
L - Instagram was so helpful – I connected with fellow gluten free foodies and they enabled me to see that eating gluten free doesn’t have to be boring or restrictive, in fact I’d say I eat so much more of a varied diet now that I can’t eat gluten. That really helped with the initial shock of such a dietary change!
5. What impact has having coeliac disease had on your day-to-day life?
C - My coeliac has definitely influenced my daily life! When I’m eating out or going to the shops I always have to pre-think about what I will be getting just in case there aren't many options. However these days there are more options out there so it’s not always a problem. At work they are able to supply me a gluten-free lunch every day which is great.
L - I love cooking so I feel that I’ve been able to navigate the day-to-day changes without huge impact, however I think a lot of that is down to the fact that most of our meals are cooked from scratch. Where it is difficult is if we try to eat convenience food, grab a sandwich on a day out or have a spontaneous meal out – I do feel that not being able to eat gluten means I have become a lot more planned – bringing my lunch, snacks etc. in case there are no safe products around or researching and booking tables in advance. Also if I have a flare up, usually due to cross contaminated products, that has a real significant impact to my health for that week.
6. Do you feel awareness around coeliac disease has increased in the past few years?
C - Absolutely! When I was first diagnosed I hadn't even heard much about coeliac before and neither had my family really. I think that most people nowadays know what coeliac is but they may not fully understand what it involves. Most people assume that it’s just wheat but don’t realise that it’s also barley and rye!
L - I feel there is a greater awareness now, however more can definitely be done especially with the ‘ins and outs’ of the disease and food intolerances in general. For example, some items on menus are labelled as gluten free, but when you ask you may then find out that they are cooked in the same fryer as gluten products and therefore have a risk of cross-contamination. Simply serving gluten free items doesn’t make it 100% safe, the preparation and cooking methods are also vital so it’s always good to be aware of these points and ask the questions if it affects you.
7. Do you find it easy going out to restaurants?
C - Mostly I do. The chain restaurants are usually really good with coeliac but the smaller restaurants don’t always have much awareness of allergies so I usually have to pre-look at the menu to make sure there are options.
L - I have a list of my local ‘go-to’ spots in Bristol now so as long as I can get a table at any one of those I’m usually happy! A lot of new restaurants popping up seem to cater for gluten free diets as well, so hopefully that list will only continue to grow.
8. What tips do you have for people with coeliac disease eating out?
C - Always check the menus before you go to make sure there are options. It’s also important to make the staff aware of your coeliac and make sure they are aware of cross-contamination.
L - Always ask if you’re uncertain about what you can and can’t have at restaurants. I used to be so embarrassed to ask but it’s your body and ultimately you’ll be the one who is ill if you have gluten, so always worth the ask!
Call ahead! I found it relieved my stress a little to have a chat with the restaurant beforehand and ask them to add a note to the booking. If it affects you, ensure you ask about cooking and preparation methods to ensure no risk of cross-contamination.And finally, keep a note of your fav GF spots as I find it’s good to have a go-to list of places when going out with friends, family are visiting, etc.
9. How do you handle having to follow a gluten-free diet when travelling abroad?
C - I use a coeliac translation card which you can find on the Internet. It basically explains to anybody what coeliac is and it also explains cross-contamination. I find these really useful when out in restaurants or at the supermarkets in countries where I cannot speak the language. It’s also important to make sure you know the translation for coeliac, gluten, barley and rye when you’re abroad so when you’re checking foods you know what to look for. There are also some brilliant instagrammers and vloggers who talk about their experiences eating abroad.
L - Plan, plan and plan! We love researching our trips anyway so this is usually a given for us, however over the years we’ve found it really fun to pick out some go-to restaurants for our trips and it gets us super excited about visiting them. Gluten free food abroad doesn’t have to be boring – we’ve had incredible pizza in Rome, tapas in Barcelona and fine dining in Copenhagen and we’ve usually found the restaurants through foodie recommendations on Instagram or online.
10. Do you feel the food market has improved when it comes to gluten free products? Do you think there are still things that could improve?
C - Yes 100%! When I first was diagnosed most supermarkets didn’t supply any gluten-free products at all, it was only health shops that supplied. Nowadays you go into any supermarket, even one of the small ones, and they supply some sort of gluten free range. There is definitely room for improvement, especially around lunch meals, I feel there aren’t enough options for that.
L - There is so much choice now so there are definitely improvements there and many of the products taste great so no complaints here! There are so many products that, with small tweaks, could be gluten free e.g. they add flour as a binder or to thicken the product. That’s such a shame as if gluten wasn’t used at that stage it would expand the gluten free offering enormously.
11. Do you struggle to find products you like in gluten-free version?
C - Yes, bread especially! I have barely found any gluten-free bread I like in all the years of being Coeliac. I feel as if they all taste very dry. I just miss fresh bread!
L - Not really but I’ve had years of experience now so normally mix and match purchasing food from different local shops and supermarkets to build up a pantry of GF products. The only thing I’m yet to find are gluten free pastries that taste like the real deal.
Takeaways are always a tricky one however even they are starting to bring out more gluten free alternatives! I think as people speak more about dietary intolerances and allergies, the more the food establishments will listen and make changes to suit as many of their customers as possible.
12.What do you think of brands like Mr Lee’s who are working towards putting out products on the market to satisfy this dietary requirement?
C - I think it's brilliant! I love how easy Mr Lee’s is, it’s great for on-the-go. I take them to work sometimes because all you need is some hot water and a spoon/fork. And even though it is free from gluten it still tastes amazing and my family who aren’t gluten free completely agree.
L - I love it, think it is so inclusive of all customers and wish we would see more of it on the market. Gluten free doesn’t mean boring, so I love when brands acknowledge that, knowing their products can be tasty with or without gluten, and decide to go without.
13. What are some of your favourite gluten-free products/brands? Why are they your favourite?
C - Obviously I love Mr Lee’s! But I’m also a huge fan of the Tesco and Sainsbury’s ranges. I think they have so much selection! I also love the brand Eat Real for their lentil crisps they’re amazing!
L - Forthay Granola – a local Cotswold granola brand who’s items I was lucky enough to try recently. Promise gluten free bread – my go to! Any time I visit Mum & Dad they always have a stash of it in. Pieminister gluten free pies are a real treat (both in store and for recreating an at-home pub meal). Warburtons crumpets are an absolute favourite of mine for a weekend breakfast!
14. Are there any fellow gluten free bloggers you would like to give a shout out to? Why do you like them?
C - Definitely Becky Excell and @Glutenfreepicks! Both of their instagrams are incredible and I have followed them both for a long time. I found a lot of gluten-free places through both of them that I love!
L - @foodbetheats – a local Bristol gal who I always find some great GF new brands through. @theglutenfreesuitcase – my go to when researching holidays. Her Rome guide was a saviour for us, wow did I find some gems in there. @beckyexcell – the Queen of the at-home gluten free recipes. If we’re cooking a fakeaway or baking a sweet treat she’ll always be one of the first accounts I’ll visit
15. Any words of advice for those who have recently been diagnosed?
C - It’s not as bad as you think! There are so many options out there for gluten-free nowadays and a lot of people understand it. Make sure you understand exactly what coeliac is and also contamination. I recommend looking at the Coeliac Uk website for any advice. I really recommend following lots of gluten-free people on Instagram because they are really helpful. My DM‘s are also always open so if you have any questions feel free to message me I’m happy to help!
L - At first it can seem so overwhelming, but there is such a wonderful community of like-minded gluten free people out there so connect, ask questions and share your gluten free experiences!