Aimee Vivian on living life to its fullest, with coeliac disease
In 2015, Capital FM DJ and presenter Aimee Vivian was diagnosed with coeliac disease, an autoimmune condition primarily affecting the small intestine, caused by an adverse reaction to gluten. Although relieved to finally have a definitive reason for her constant pain and discomfort, Aimee’s life changed dramatically to accommodate the condition.
Aimee is passionate about helping others live their best life in the wake of their own coeliac diagnosis and talks to us about how she has made adjustments to ensure she’s still the same Aimee (pain-free), but with a newfound love for experimental cooking!
How has the diagnosis of coeliac changed your lifestyle?
My lifestyle had to change quite a lot. I have found, however, that there’s always a way around things, and it is just ‘life’ now. Going out to dinner with friends is tricky and can’t really be spur of the moment – I need to have a plan. Do we know where we’re going? What gluten-free options do they have? Should I just eat before? I can’t rely on street food or grabbing something on the go, so I’ve had to learn to be prepared.
I can’t get embarrassed about being that person that always has to ask, “is there a gluten-free option?” or, “what are the risks of cross-contamination?”. These questions might seem tedious, but it’s always better to ask than risk having a reaction to gluten – especially in a public place. My diagnosis has also changed the way I have to think about bigger things, like holidays, weddings or parties, because you have to check if they can cater to your needs.
On the plus side, I can honestly say that I feel a lot healthier in general, I have more energy and am a lot happier because I’m not in constant pain any more without knowing why.
Did you have an inkling before the diagnosis that something may be medically off-balance?
Yes. Put simply, it took around 10 years for me to be correctly diagnosed as coeliac. I spent so many years feeling constantly unwell and nobody seemed to know why. I was in and out of hospital having different scans, a laparoscopy, endoscopy, biopsies and blood tests, as well as having to cut out whole food groups one at a time. A big problem with coeliac disease is that the symptoms are very similar to a lot of other health issues such as IBS (irritable bowel syndrome) or problems with the reproductive organs. Coeliac is quite often the cause of IBS or will run alongside it, making it more difficult to detect.
How have you managed to find gluten-free foods in the wake of COVID-19?
I have a long-standing weekly fruit and veg order with a local, independent greengrocer who has been able to continue safely delivering to my doorstep, so I haven’t lost out on fresh produce luckily. He brings eggs too which have been a key ingredient for a lot of my meals lately! Fortunately, I am used to being prepared and always plan my meals in advance. For everything other than fruit and veg, we would typically go to the supermarket, but there have been huge shortages of specifically gluten-free products like pasta, which I have come to rely on heavily.
When the pandemic hit and everyone started panic buying, people started taking the gluten-free options in place of regular bread and pasta etc. We do have a few local heroes however in the form of Italian restaurants who are selling gluten-free bread, flour, pasta and even beer, for those of us who really fancy it!
Are there any alternatives you have found when you couldn’t access your regular gluten-free foods?
If you can’t find any gluten-free options in your local shops or smaller restaurants, it might be time to get inventive. I’m really enjoying experimenting in the kitchen at the moment. Get yourself a spiralizer, make some courgetti if you can for a delicious, healthy and perfectly gluten-free variant for spaghetti! You can even make your own pasta – it’s actually pretty simple and what better time than now to try it out. Or try swapping the pasta out of the meal completely for rice or potato, there are some delicious recipes online to follow.
I can still eat loads of the things I love, just by swapping out a few ingredients. For example, I have tacos and fajitas but with a big piece of gem lettuce instead of tortillas. For my favourite lemon cupcakes, I use almond milk – it makes them taste delicious and gives a great alternative flavour.
Are there any symptoms you notice when you may have inadvertently eaten gluten?
Oh yes. If I eat even the smallest amount, I get a severely bloated tummy very quickly. Depending on how much I’ve consumed, this will be followed by unbelievable pain in my abdomen (originating from the small intestine) from indigestion, which often leaves me doubled over and unable to stand up straight. This can last hours. Plus, without going into too much detail – it seriously upsets my digestive system. This is where the IBS really kicks in and I can basically rule out the next few hours.
What advice could you give to anyone recently diagnosed with coeliac disease?
- Try to stay positive. This disease has the ability to get you down, but remember – it’s part of what makes you, you. Be proud of the fact that you are healthier and happier now that you have the diagnosis, and the ability to deal with it.
- Stay active. I always find that if I’ve had a sore tummy, light exercise can help ease the pain. I wouldn’t recommend anything too vigorous, just a light walk to get the body moving again. A happy body and a happy mind work hand in hand.
- Plan ahead. Don’t be afraid to pre-plan for dinner if your friends haven’t decided where they want to go.
- Speak up. When I first got diagnosed, I used to be nervous to say anything because I didn’t want to be difficult, but this was never my choice, and I have the right to enjoy my night out just as much as everyone else! Luckily there are so many more gluten-free options available in restaurants these days, so there’s a lot more choice for everyone involved.
- Don’t be embarrassed. There’s no hiding it, the side effects are unpleasant. They can make you feel horrible, but don’t let it take over your life. Remember it is not your fault and anyone who is going to judge you, probably isn’t someone you need around.
Aimee Vivian was diagnosed with coeliac in 2015 after battling years of what she now recognises as painful coeliac flare-ups. She currently presents on Capital Radio 1-4 pm Monday – Friday. Follow her journey on Instagram.