Nottinghamshire people living with coeliac disease have revealed what life is like living with the serious autoimmune condition to mark its awareness week.
Coeliac disease is caused by a reaction to gluten – a protein found in wheat, barley and rye – and develops when the body recognises healthy cells as foreign, and releases antibodies to ‘protect’ it.
Currently only 24 per cent of people who have the condition in the UK have been diagnosed, and more than 500,000 people are thought to suffer from it without knowing.
There is no cure for the condition and the only treatment is a gluten-free diet.
Once all gluten has been removed, the symptoms usually disappear.
Clare Wheat, owner of Nottingham’s only all gluten-free cafe, has suffered from the disease for 20 years and says gluten-free options for people with the condition are ‘limited’.
After discovering a passion for gluten-free baking, she began selling cakes through several local cafes, before opening her own business Dottie’s Tearoom, in Arnold, two years ago.
What is coeliac disease?
- Coeliac disease is a lifelong autoimmune disease caused by a reaction to gluten.
- 1 in 100 people have the condition.
- Symptoms include bloating, diarrhoea, nausea, wind, constipation, tiredness, sudden or unexpected weight loss (but not in all cases), hair loss and anaemia.
- Once diagnosed, it is treated by following a gluten-free diet for life.
- Dermatitis herpetiformis is the skin manifestation of coeliac disease.
Clare said: “There is a lot more awareness about coeliac disease now, but for years I struggled to find somewhere to eat at lunchtime and was limited to the options of salad or a jacket potato.”
Clare says even some places that offer gluten-free options are not always 100 per cent safe for coeliacs.
“The problem is a lot of places who offer gluten-free food are not aware of cross-contamination, so even if gluten-free food has been prepared alongside regular food – people with coeliac disease can have a reaction,” she says.
“I have been quite lucky – from the start I was strict and controlled my diet, and on occasions when I’ve eaten gluten, I’ve only reacted for a couple of hours.”
Symptoms of the condition can be different from person to person, but commonly include bloating, nausea, tiredness and weight loss.
Lydia Meredith, a former student at Nottingham Trent University, was diagnosed with coeliac disease when she was 14, and says Nottingham has a good variety of gluten-free food outlets.
“When I was first diagnosed with coeliac disease I’d never heard of it. I didn’t know anything about it and I didn’t know anybody else who had it – I thought ‘what am I going to do?’,” she says.
“But it has become a lot more common and there are so many gluten-free products available now – but i do miss eating Chinese takeaway.”
Lydia says finding places like Hartleys, in Hockley, and Aubrey’s Creperie, in Long Row, who offer gluten-free options, has made eating out much easier.
“I used to be worried when I went out and didn’t want to be a pain by asking questions when I ordered in restaurants,” she said.
“I don’t think there’s enough education and training about coeliac disease in some restaurants – especially when it comes to cross-contamination of food – but Coeliac Awareness Week is a good way to spread word about the condition to everyone.”
This year Coeliac Awareness Week runs from May 8 to May 14, and aims to improve gluten-free food and support those who have the condition, as well as their friends and family.