How Lou has come to terms with having coeliac disease

Coeliac disease sufferer, Louise Burkett, at her home in Sheffield
Coeliac disease sufferer, Louise Burkett, at her home in Sheffield
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fish and chips by the seaside on a summer’s evening, crusty warm bread dripping with butter, a pizza loaded with cheese and other tasty toppings.

fish and chips by the seaside on a summer’s evening, crusty warm bread dripping with butter, a pizza loaded with cheese and other tasty toppings.

They’re all dishes to make your mouth water - but are out of bounds for coeliac sufferer Lou Burkett.

And the Sheffield mum is certainly not alone - since the auto-immune disease, which centres around an intolerance to gluten which is found in wheat, rye and barley, affects one in 100 people in the UK.

Symptoms vary between different people but can include diarrhoea or constipation; persistent nausea and vomiting; recurrent stomach pain, cramping or bloating; tiredness and headaches, and weight loss - although that is by no means a comprehensive list.

It can also lead onto other more serious conditions like osteoporosis - since the body and the bones are not absorbing the nutrients it needs - infertility and repeated miscarriages.

For Lou, from Millhouses, the symptoms started when she was in her early thirties.

She suffered from perhaps the more obvious symptoms of diarrhoea and weight loss, but it was the extreme exhaustion which left her constantly wiped out that was the worst thing to deal with - a symptom which only became worse when she was pregnant with her third child Emily, now aged 13.

It took four years of “putting up” with such discomfort and return visits to the GP before she got a diagnosis of coeliac disease - although staggeringly this is a relatively short time frame given that the average sufferer waits 13 years.

This is one area she particularly wants to speak out about - encouraging people who are experiencing potential symptoms of the condition to push for a test to check if they have the disease, rather than suffering in silence or being fobbed off by a doctor who is convinced it is irritable bowel syndrome.

Lou, who runs Burkett Quicksign near Meadowhall with her husband Chris, said: “My parents both died within a year of each other, I had three kids and a business to run, so I had a lot of stress going on.

“I just thought with all that I was bound to be tired, and I thought if it was IBS then the stress would only be triggering it further. I just got on with things. But I’d now tell people to ask to be checked out if they suspect it could be coeliac disease, even it it’s only to discount it.”

Now aged 49, Lou - also mum to Dave, 23, and John, 19 - has been living with the official diagnosis for 11 years.

She manages it through home cooking and by being extremely careful with the ingredients and products she buys - constantly scanning food labels and packaging for any signs of gluten. A directory from the Coeliac UK charity has also been a “bible” for her in determining what she can and can’t eat.

Although now confident and accepting of the condition, she admits that in those first months after receiving the news it was a rather different story.

“It was a daunting time,” Lou said.

“The supermarkets weren’t anywhere near as well stocked as they are now and I started to trawl through the samples I’d been given on prescription - which were horrible. I started to see food as a problem and I felt deprived and angry.”

Throughout those first years she received great support from a group of other young women in the same situation, who came together for informal meetings offering advice and a friendly ear.

They used to meet up every couple of months - baking together at each other’s homes and enjoying the company of others who were going through similar experiences. The support network is still there today - although the meetings have reduced as they all work to balance career commitments and family life.

Lou admits that it is “wonderful to feel well” now that she has a hold on her condition, but still misses the spontaneity of life without a strict diet regime.

“It is another thing to manage,” Lou said, “which can get annoying when your life is so busy anyway.

“There’s nothing that you can do which is spontaneous when you are coeliac - I can’t jump in the car on a sunny day and enjoy fish and chips on a bench on the seafront at Bridlington any more. And although shops and restaurants are getting better at making provision for gluten free diets, there’s still a long way to go. I dread things like train and plane journeys because there is never anything available that is suitable for me to eat, even the salads nearly always have pasta in them - you always have to be prepared and make sure you have snacks in your bag.”

And she added that although there are now plenty of alternatives available for her to tuck into without fear of becoming ill, none quite match up to the ‘real thing’.

“I’d just love to be able to tuck into some warm crusty bread,” Lou said. “Walking past a bakery and smelling that smell is awful!

“But I just have to put it out of my mind. I have come to terms with it now.

“I’m grateful that I can control it and I don’t have to take tablets every day. The fact that you feel well when you are managing it - compared to how I felt beforehand - is great, and helps make it easier to deal with.”

Coeliac Awareness Week runs from May 16 to May 22.

Silversmiths in Arundel Street, Sheffield city centre, is hosting a special four-course gluten free dinner on the night of Monday May 16 to celebrate.

Catering students from Sheffield’s Castle College will also be cooking up some gluten free treats for Coeliac UK members on May 17 to mark the awareness week.

The charity is asking people across the country to do something gluten-free during the awareness week. Visit www.coeliac.org.uk/glutenfreepledge to register your support.

Email sheffield@coeliac.org.uk to make contact with the South Yorkshire and North East Derbyshire branch of the Coeliac UK organisation, which is chaired by Mike Davidson.