{"id":108090,"date":"2025-05-17T04:21:18","date_gmt":"2025-05-17T04:21:18","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/108090\/"},"modified":"2025-05-17T04:21:18","modified_gmt":"2025-05-17T04:21:18","slug":"i-have-coeliac-disease-heres-what-no-one-tells-you-about-going-gluten-free","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/108090\/","title":{"rendered":"I have coeliac disease \u2013 here\u2019s what no one tells you about going gluten-free"},"content":{"rendered":"

Aimee Vivian is used to being the “gluten-free friend,” having been diagnosed with coeliac disease<\/a> 10 years ago. In fact, she\u2019s 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.<\/p>\n

But it hasn\u2019t always been easy for her.<\/p>\n

While the Capital FM presenter<\/a> eventually received her diagnosis in 2015, through a simple blood test at her GP\u2019s 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 \u2013 and they can also sort of mask each other<\/a>.<\/p>\n

“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 \u2013 even though I was still uncomfortable and things kept happening that didn\u2019t feel right. I would get a very bad tummy, I would be very bloated and feel a lot of discomfort.”<\/p>\n

The turning point, which then led to her diagnosis, was when she ordered a Domino\u2019s Pizza after a night out at university. “The next day I was feeling very, very poorly, thinking, \u2018Oh, I thought that was supposed to make me feel better [on a hangover]\u2019. 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.”<\/p>\n

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Things like pasta, bread and cakes contain gluten. (Getty Images)<\/p>\n

According to Coeliac UK<\/a>, the genetic autoimmune disease triggered by gluten affects one in 100 people \u2013 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).<\/p>\n

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) \u2013 it can even impact fertility and cause nerve damage.<\/p>\n

It’s for this reason that Vivian gets frustrated when people conflate coeliac disease with gluten intolerance or a gluten-free diet. “It\u2019s 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.”<\/p>\n

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 \u2013 you\u2019re like \u2018Yes! I can eat chips!\u2019 But then you ask if they\u2019ve been cooked in a separate fryer and they say no, meaning if you\u2019re coeliac you can\u2019t have them.”<\/p>\n

\"LONDON,<\/p>\n

It took 10 years for Aimee Vivian to finally get her diagnosis. (Getty Images)<\/p>\n

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 \u2013 and I will repeat myself. I will say \u2018so is it definitely gluten-free?\u2019, \u2018Is it definitely cooked in a separate fryer?\u2019 And when the meal arrives, I will ask another time, \u2018Is it definitely gluten-free?\u2019<\/p>\n

“And if I\u2019m 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\u2019d much rather ask the questions than risk having a reaction and making myself poorly.”<\/p>\n

Doing the weekly food shop \u2013 when Vivian has far greater control about the food she is getting \u2013 is no walk in the park either.<\/p>\n

“I live in a little village, so we don\u2019t even have a big shop and the local store doesn\u2019t have much. Even at the supermarket though, there\u2019s not always loads of choices and, of course, there\u2019s a surcharge \u2013 let\u2019s call it that, because that\u2019s what it is.<\/p>\n

“A pack of wheat pasta would cost you around 75p, whereas a free-from pack would be more like \u00a32.75. 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.<\/p>\n

“It\u2019s even harder for families,” Vivian continues. “Then there\u2019s things like kid\u2019s parties \u2013 how do you tell a six year old \u2018no, sorry, you can\u2019t eat cake\u2019? Even if you bought a gluten-free alternative, it\u2019s so expensive \u2013 then most of the time the finger food and buffet is full of wheat, etc. It not only means they\u2019re missing out, it further creates this sense of ‘I\u2019m different’.”<\/p>\n

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 \u2013 which is not only more budget-friendly, but seems to include healthier options. “I don\u2019t know why, but when they take the gluten out, places seem to add all sorts of other things in,” she comments.<\/p>\n

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 \u2013 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.<\/p>\n

“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.”<\/p>\n

Vivian has also found helpful resources online, such as curated Google Maps that tell you where is coeliac safe when abroad \u2013 she even compiled her own earlier this year during a trip to New York City.<\/p>\n

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.<\/p>\n

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 \u2013 as she can attest to.<\/p>\n

“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.<\/p>\n

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 \u2013 I mean, I took a lunchbox to a wedding.”<\/p>\n

You can learn more about coeliac disease at Coeliac UK or the NHS website. You can also get a test via your GP.<\/p>\n

Read more about diet and nutrition:<\/strong><\/p>\n