'Everyone thinks it’s just a fashion trend or a fad' - Preston Coeliac UK member discusses cross-contamination and embarrassing symptoms

Being diagnosed with coeliac disease has improved over the past few decades, but there’s still a long way to go. Molly Court talks to Megan Haigh, a member of Preston’s Coeliac UK group about her diagnosis and cross-contamination.
Megan HaighMegan Haigh
Megan Haigh

Anaemia, childhood bowel troubles and a week long hospital stay because of cross-contamination are just some of Megan Haigh’s struggles having been diagnosed with coeliac disease three years ago.

Coeliac disease is a condition where your immune system attacks your own tissues when you eat gluten. This damages your small intestine so you are unable to take in nutrients.

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It’s caused by an adverse reaction to gluten, which is a dietary protein found in barely, wheat and rye.

Megan, 24, from Walton-le-Dale, said: “My symptoms were predominantly diarrhoea and I was anaemic. I felt very dizzy, very brain foggy and couldn’t really think straight. I was tired and lethargic all the time as well.

“I’ve always been a sickly child to be honest. My biggest thing is my weight which I really struggle to gain and keep.

“I’ve always been a tiny kid, always had bowel troubles and always sick.

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“My mum and dad didn’t know what it was, they just thought I would grow out of it.”

But it got to the point when Megan, who works in pharmacy and admin, knew something wasn’t quite right.

She was originally diagnosed with Crohn’s disease but after undergoing more tests, checks and endoscopies for five months, Megan was diagnosed with coeliac disease.

Megan said: “The diagnosis was a funny feeling really, I was relieved to know what it was, with the aim of stopping how I was feeling but I also felt a bit isolated and upset.

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“I thought I couldn’t enjoy food anymore, I couldn’t go out with friends. That was the thing that bothered me the most.”

When Megan was diagnosed, the first thing she did was look around for support.

She joined her local Preston coeliac group and came across a big coeliac community on social media.

Megan said: “My mum took me shopping as soon as I was diagnosed and was cooking gluten free meals to show me food was still good.

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“I thought, you know I can do this, this is alright, and then to realise gluten was in gravy powder, some hot chocolates, some salt and pepper grinders. It was crazy what it was actually in.

“So many things contain warnings and labels are obviously detrimental to coeliacs.”

Going out to eat in public places isn’t easy for those with coeliac disease, as many fear their requested gluten-free food will still be contaminated with gluten.

Megan said: “I get a little bit anxious sometimes when I go out to eat in new places, but I always try to push myself and try somewhere new every month.

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“It’s nerve wracking. I think it’s more about the embarrassment, especially with my symptoms mainly being diarrhoea. I act within five minutes of eating gluten.”

Although professionals are becoming more aware of coeliac disease, there is still a concern for cross-contamination in restaurants.

Megan said: “There was one occasion where I had a supposedly gluten-free full English breakfast but they cooked it in the same pan as normal sausages, so I was in hospital for a week because I was so dehydrated.

“In restaurants, people need a bit more understanding of the severity of it. I do think celebrity culture has made everyone think it’s a fashion trend or just a fad.

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“The amount of times I’ve been to a restaurant and I’ve said I need gluten-free food and they’ve said ‘oh is it a new diet you’re on?’

“That’s the first thing they ask rather than if you have a condition.”

Megan says with cross contamination, people don’t really understand why food has to be prepared and cooked separately.

She said: “I don’t think people realise how severe it can be, they just think you get bloated or something.”

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