I have coeliac disease – here's what no one tells you about going gluten-free
Aimee Vivian is used to being the "gluten-free friend," having been diagnosed with coeliac disease 10 years ago. In fact, she's more than okay with her pals "taking the mickey" out of her because of her dietary requirements, and has found this to be a great help in adjusting to her new way of life.
But it hasn't always been easy for her.
While the Capital FM presenter eventually received her diagnosis in 2015, through a simple blood test at her GP's office, it was a long time coming. Vivian explains to Yahoo UK: "No exaggeration, I had been in and out of hospital for 10 years prior, having a whole range of tests and surgeries to try and investigate what was going on. That is partly one of the biggest problems with coeliac disease; the symptoms that you can get are often symptoms you can get with a whole range of other medical problems – and they can also sort of mask each other.
"For example, when I was 15 years old, I would get really bad periods, and so the doctor automatically put me on the pill and hoped that that would sort it out. And, you know, I sort of managed and plodded along – even though I was still uncomfortable and things kept happening that didn't feel right. I would get a very bad tummy, I would be very bloated and feel a lot of discomfort."
The turning point, which then led to her diagnosis, was when she ordered a Domino's Pizza after a night out at university. "The next day I was feeling very, very poorly, thinking, 'Oh, I thought that was supposed to make me feel better [on a hangover]'. I gradually realised that when I ate bread it became worse, but even then, it still took another three years after that point to get them to do the test on me."
According to Coeliac UK, the genetic autoimmune disease triggered by gluten affects one in 100 people – but only 36% are correctly diagnosed. A further estimated half a million in the UK are currently undiagnosed, and one in four people with coeliac disease have previously been misdiagnosed with irritable bowel syndrome (IBS).
Symptoms vary in type and severity, depending on the individual, but typically include bloating, diarrhoea, nausea, constipation, fatigue, headaches, mouth ulcers and sometimes unexpected weight loss. In more extreme cases, coeliac disease can lead to malnutrition and dermatitis herpetiformis (an itchy rash with blisters) – it can even impact fertility and cause nerve damage.
It's for this reason that Vivian gets frustrated when people conflate coeliac disease with gluten intolerance or a gluten-free diet. "It's not a lifestyle choice," she says. "The smallest crumb can cause all sorts of problems for those who have coeliac disease, and can cause damage to the gut lining even in those who are asymptomatic."
One of the main obstacles she faced when first diagnosed was navigating eating out at restaurants. "You go to restaurants and see gluten-free chips on the menu and you get really excited – you're like 'Yes! I can eat chips!' But then you ask if they've been cooked in a separate fryer and they say no, meaning if you're coeliac you can't have them."
At first, advocating for herself and speaking up when out and about used to daunt Aimee, but then she soon "learnt to use my voice a lot more." She continues: "I am not afraid when I go out to a restaurant to ask a million questions – and I will repeat myself. I will say 'so is it definitely gluten-free?', 'Is it definitely cooked in a separate fryer?' And when the meal arrives, I will ask another time, 'Is it definitely gluten-free?'
"And if I'm not confident, I will double-check or, I will not eat the meal. I think that is the main thing you learn over time: to become more confident with your voice. For me, I'd much rather ask the questions than risk having a reaction and making myself poorly."
Doing the weekly food shop – when Vivian has far greater control about the food she is getting – is no walk in the park either.
"I live in a little village, so we don't even have a big shop and the local store doesn't have much. Even at the supermarket though, there's not always loads of choices and, of course, there's a surcharge – let's call it that, because that's what it is.
"A pack of wheat pasta would cost you around 75p, whereas a free-from pack would be more like £2.75. It is heavily inflated and, especially right now, during a cost-of-living crisis, it adds a hell of a lot to the weekly shop.
"It's even harder for families," Vivian continues. "Then there's things like kid's parties – how do you tell a six year old 'no, sorry, you can't eat cake'? Even if you bought a gluten-free alternative, it's so expensive – then most of the time the finger food and buffet is full of wheat, etc. It not only means they're missing out, it further creates this sense of 'I'm different'."
When it comes to the best supermarkets and brands for gluten-free options, Vivian says that both Tesco and Morrisons are her favourites, and that Aldi has just launched a free-from range – which is not only more budget-friendly, but seems to include healthier options. "I don't know why, but when they take the gluten out, places seem to add all sorts of other things in," she comments.
Her husband has also been really supportive throughout their relationship. "At first he didn't realise how much I needed to consider as a coeliac – not in a rude way, but because he'd never experienced it before. You know, things like separate chopping boards, fryers, etc. Then he began Googling restaurants and checking that they were gluten-free and coeliac safe.
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"The further we got in our relationship, it was really nice, because for once, it wasn't always me who had to speak up and ask questions. He took a lot of the burden off me."
Vivian has also found helpful resources online, such as curated Google Maps that tell you where is coeliac safe when abroad – she even compiled her own earlier this year during a trip to New York City.
Elsewhere, there are gluten-free influencers she likes to follow, such as Sarah Howells, Morgan Moore and Alice Wiggins, and she creates her own videos for followers about where to shop and how to cook when following a strict gluten-free diet.
Whether others suspect they have coeliac disease or they have just been diagnosed, Vivian stresses the importance of advocating for yourself, because you know your body and it's not always a straight-forward journey – as she can attest to.
"If you think that you've got it, go to the GP, get the blood test. Say, 'I know I can ask for it' and get the coeliac blood test specifically. You will know, because you will learn your own symptoms and triggers." She also encourages those with coeliac disease to speak up and ask questions.
Her final pearl of wisdom? "Pack snacks," Vivian laughs. "I mean, everyone should always pack snacks, but if you're worried about food options or not being able to eat, go prepared – I mean, I took a lunchbox to a wedding."
You can learn more about coeliac disease at Coeliac UK or the NHS website. You can also get a test via your GP.
Read more about diet and nutrition:
5 ways to do the Mediterranean diet for less (Yahoo Life UK, 4-min read)
Six health benefits of asparagus (and why it makes your wee smell) (Yahoo Life UK, 3-min read)
13 high-protein breakfasts to eat as cereals fall out of favour among Brits (Yahoo Life UK, 6-min read)
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