"The aim is to create a network of parents with children with similar conditions"

LITTLE Peggy O'Leary is just like any other six year old – with one big exception.

If she eats a slice of pizza, a sausage roll, or some birthday cake, it will make her ill. Gravy and Yorkshire puddings with a Sunday roast, a cheese sandwich and fish and chips will make her poorly too.

Peggy, of New Earswick, has coeliac disease, an autoimmune disorder that affects 1 in 100 people and attacks the digestive system, stopping it from absorbing nutrients. It is triggered by eating gluten which is found in a whole host of everyday foods including bread, pasta, cereals, biscuits, cakes and sauces. The most common side effects are stomach pains, diarrhoea, bloating and flatulence, indigestion, constipation, fatigue, anaemia, and unexpected weight loss.

In children, symptoms can include vomiting too. In some patients, a rash can occur.

The first sign that Peggy had a problem eating gluten arose two years ago after she ate some Doritos and came out in a rash across her body and became very lethargic.

Her mum Rebecca and dad Chris took her to A&E. "They took some blood and a couple of weeks later we got a call from our doctor to come in and talk about the results," says Rebecca. "When they said they indicated an intolerance to gluten, you could have knocked me down with a feather."

The couple knew all about living with a digestive disorder – Chris has Chron's disease and has to follow a restricted low-fibre diet.

Medical advice was for Peggy to have further tests to confirm the diagnosis in six months time. Rebecca explains that the only sure way to detect the condition is through a biopsy. For Peggy, that meant having an endoscopy under general anaesthetic where a small camera was placed down her throat to investigate the intestinal tract and take a biopsy of the gut.

Ironically, before this investigation, Peggy had to continue to eat gluten, so that her symptoms would still be apparent when doctors carried out the test.

Rebecca says: "It is frustrating that you have keep suspected coeliacs on a gluten diet in order to get a positive result. A lot of people with coeliac disease don't make it to the endoscopy stage because it just hurts too much.

"I felt guilty giving Peggy Weetabix every morning. She wasn't poorly all the time, but it could have been harming her slowly every single day. But you have to go through this to get the diagnosis. It stinks."

When Peggy was eventually diagnosed with coeliac disease, the next challenge was making her school – Headlands Primary at Haxby – aware of her specialist health and dietary needs.

Happily, this was a positive experience and the family, the head teacher and the catering team worked together to create a plan of action and clear guidelines, ideal for use in the future should other pupils need to follow a gluten-free diet. This included making teaching staff aware of the child's health condition and as well as other pupils and catering staff.

Peggy has to wear a yellow wristband and canteen staff know to use separate serving spoons for her. In the kitchen, gluten-free dishes are prepared every day, so Peggy can take up her entitlement to free school lunches (available to all children in England in reception and Years 1 and 2).

Rebecca, who also has a two-year-old son Reg, says while its important to keep Peggy safe, it's also vital that she doesn't feel singled out because of her medical condition.

Rebecca adds: "It's great that Peggy can have a hot lunch every day, which she is entitled to. It is about inclusivity and equality: it's really important to Peggy that she eats with her friends."

And she is exceptionally proud of Peggy who gave a talk to her class mates all about coeliac disease – and took in some gluten-free buns for them to eat. She also showed them photographs of a fundraiser she'd taken part in the weekend before for Coeliac UK.

Rebecca would like to see "Peggy's Plan" rolled out to other schools in York – and across the country. She has already won the support of her local MP Julian Sturdy and will be having a meeting with York City Council soon to discuss this matter.

She says: "Under section 100 of the Children and Families Act of 2014, schools have a legal responsibly to make arrangements for supporting pupils at school with medical conditions."

Rebecca has been chronicling the challenges the family have faced in her blog: willweevereatoutagain.blogspot.com. Now she has set up a Facebook page (Food For All At School), specifically for parents of children who have to follow specialist diets or have diabetes or food intolerances. Rebecca is encouraging parents to join the Facebook group. She says: "The aim is to create a network of parents with children with similar conditions."

Find out more at coeliac.org.uk