COELIAC disease affects approximately one per cent of people in the UK although some experts think this may be an underestimate because milder cases may go undiagnosed or be misdiagnosed as other digestive conditions, such as irritable bowel syndrome.

Coeliac UK, the national charity for people with coeliac disease, is launching the UK’s first online assessment to help fast track diagnosis among the 500,000 people living in the UK with undiagnosed coeliac disease during Coeliac Awareness Week from May 11 to 17.

The charity’s latest campaign ask people experiencing the most common symptoms of coeliac disease “Is it coeliac disease?”

A dedicated website, www.isitcoeliacdisease.org.uk will host the new assessment questionnaire and provide detailed information about coeliac disease and outline the campaign activities.

The new online assessment will give people more confidence to seek further medical advice from their GP. Upon completion of the assessment, they will receive an email with the results which will indicate whether their symptoms are potentially linked to coeliac disease.

Sarah Sleet, chief executive of Coeliac UK, said: “With half a million people living with undiagnosed coeliac disease we must take radical action to turn around this horrendous situation.

“We hope that giving people direct access to an online assessment tool will put those who are suffering with the symptoms of undiagnosed coeliac disease on a pathway to diagnosis and avoid potentially life threatening long term health complications.

“We also hope it will help reduce the unacceptable length of time to gain a diagnosis which is currently, on average, 13 years.”

• Reported cases of coeliac disease are two to three times higher in women than men and can develop at any age, although symptoms are most likely to develop during early childhood – at between eight and 12 months old and in later adulthood – between the ages of 40 and 60 years.

• Coeliac disease is an autoimmune condition, which is where the immune system – the body's defence against infection – mistakenly attacks healthy tissue.

• It is a digestive condition where a person has an adverse reaction to gluten but it is not an allergy or an intolerance to gluten.

• This damages the surface of the small bowel (intestines), disrupting the body's ability to absorb nutrients from food.

Eating gluten - a protein found in wheat, barley and rye - can trigger a range of symptoms including diarrhoea, which may smell particularly unpleasant; bloating and wind; mouth ulcers; anaemia; adominal pain; weight loss; feeling tired all the time as a result of malnutrition (not getting enough nutrients from food); children not growing at the expected rate

DISCOVERING, at the tender age of five, that she had coeliac disease could have been a devastating blow for little Carla Smith from Pershore.

But her family, school and friends as well as the health services have made sure she isn’t left feeling excluded or different – even if she does have her own toast, freezer, chopping board and food cupboard at home.

Her mum Joanne said she knew there was something wrong but could not put her finger on it. From the age of about two and a half she would have periods of having diarrhoea, looking pale, tiredness and waking up with tummy ache.

It was never properly diagnosed until last November when she had violent tummy pains, said Joanne. She ended up in A&E at Worcester where it was thought to be a bowel problem and blood tests showed it was coeliac disease.

Ever since then Carla has been eating a gluten-free diet and her family has embraced the change too. They all eat gluten-free when they sit down to a family meal.

“The first thing I did when I knew Carla was coeliac was to join Coeliac UK. If you have any questions you can e-mail them and they respond straight away. Their food directory is amazing. That has been a great help to us. It is like a Bible. It lists all the supermarkets and their gluten-free products.”

Coeliac UK also has an app for mobile phones allowing people to scan the barcode and it identifies if the product contains gluten, said Joanne.

“Our main priority is making sure Carla is not treated any differently. She accepts it and she never complains.”

She said Carla’s school Cherry Orchard First School in Pershore, had responded really well making sure Carla could join in with activities such as making Easter cakes. The school checked with Joanne about the ingredients she could use. On some occasions gluten-free ingredients are used by all the children in Carla’s class.

Carla’s photograph is also on the wall of the school kitchen so that staff knows she has coeliac disease. The youngster does take her own packed lunch because she knows it is safe to eat. “The school has been very good. They go out and buy special ingredients for her.”

The family has even found a local butcher who sells coeliac sausages, said Joanne. Some of Carla’s food, such as bread, is provided on prescription.

“Going to birthday parties is the hardest thing,” said Joanne. “I try and speak to the person organising the food before the party so that if it is sandwiches and cakes, I can make sure she has a plate of gluten-free food just like the others.”

Joanne adds that Carla has been very grown-up for her age about her condition and if someone offers her a sweet or another treat, she always asks her mum if she can have it. “She knows how poorly it will make her if she is tempted.”

Since being on the gluten-free diet her energy levels have returned to normal and she takes part in all the usual after school clubs.

Her brother Kian, nearly three, dad Iain and mum have all been tested for coeliac and their results came back negative.

BEFORE Nicky Ratcliff was diagnosed with coeliac disease she was feeling generally unwell – tired, bloated and had a skin irritation.

The 38-year-old mental health nurse, who works in Kidderminster and south Worcestershire for the Worcestershire Child and Adolescent Mental Health Service, did not know what was causing it but a blood test nearly nine years ago during her pregnancy came back positive for the illness.

She had to stop eating gluten or the consequences were extremely dramatic. “If I ate gluten, within 20 minutes I was double up in pain and would be on the toilet for 10 hours. I would be unwell for about a week altogether.”

That was about nine years ago and although she is determined not to let it get her down, she still finds it a frustrating condition.

She says she was told to stop eating gluten but there was no emotional support from the health services. “The health services do not support you with managing it emotionally. I do feel constantly frustrated by the illness.”

“If I go on holiday I have to take so much gluten free food with me. If I go to a big occasion like a wedding or Christening – even if they say they have catered for my condition – I eat a bit and wait for 30 minutes to see if I am going to have a reaction. I am constantly nervous.”

She says cooking without gluten is not easy and if her son comes home from school after doing cookery and wants her to try a cake he has made, she can’t do it.

She explains that living with other’s – her son Cameron, her partner and his three children - who all eat gluten also raises the issue of cross contamination with her food. She has to make sure there are no bread crumbs from the toaster for example in contact with foods like butter and cheese which she can eat.

Nicky used to love going out for meals before she was diagnosed but it is much harder now. She says she has to explain her condition to waiting staff and hope there is something suitable on the menu.

Sometimes there is only one option. “I have to be constantly aware and it is exhausting. Having fast food, if I want a snack, is so hard as a lot of places have no gluten-free options. You are so restricted.

“Some restaurants are getting better now. But it annoys me that buying gluten-free food is so expensive. It is £3 for a loaf of bread and the bread isn’t very nice.”

The other drawback comes when she meets new people and her illness comes out in conversation. “I am constantly having to explain my bowel habits,” she says.

She said there needs to be greater awareness of the condition and how it affects people’s everyday lives. She also said it would help if TV chefs and cookery programmes, like the BBC’s Saturday Kitchen, MasterChef and the Great British Bake Off, focused more on gluten-free cookery.