When Julie Scully read that dental decay can be a symptom of Coeliac disease, the penny dropped that her nine year old daughter Juliette could be a sufferer, but it was to be another 13 months before she was diagnosed, so long is the waiting time for aa small bowel biopsy in Ireland.
That was a month ago, and her mother is already noticing a big difference in Juliette, a pupil of Rath NS, since she switched to a gluten free diet.
“She has colour in her cheeks she never had before. Juliette didn’t have the obvious symptoms like weight loss or slow growth, but she always looked pale and unwell,” she said.
The family from Jamestown, near Ballybrittas recently attended the National Convention and AGM of the Coeliac Society of Ireland, where Juliette happily agreed to take part in a photocall to promote their campaign.
“She was delighted. She really felt very special to be doing it, and she was happy she got to keep the t-shirt,” her mother laughed.
The Coeliac Society of ireland is highlighting the message that one in 100 Irish people are thought to be Coeliac, and as many as five out of six people are yet undiagnosed.
One of the difficulties of diagnosis is the variety of symptoms presented by the disease, which can be triggered at any age by an infection.
They can include diarrhoea, constipation, bloating, stomach pain, mouth ulcers, fatigue, failure to thrive in children, bone pain, weight loss, anaemia, or indigestion.
Julie is in the process of getting her three young boys tested, as the disease is genetic, and says the strict gluten-free diet is hard to adjust to.
“It’s not just about her diet, it’s emotional. She is looking at foods she loved and can’t eat them. The gluten free food doesn’t taste the same, and it is so expensive. Our biggest fear is that she wouldn’t be able to go to friends’ houses, so we are making a huge effort to get everything she needs, and send a picnic with her, and keep her home for meals. We had to throw out our toaster because even a crumb of bread can’t land on Juliette’s plate,” she explained.
Gluten is in wheat flour, which is in a huge variety of food, from sauces to sausages. Everything prepackaged and all restaurant and fast food is out, unless they specifically say they are gluten free. It can take up to a year for the gut to fully recover, after which it becomes hyper sensitive, so even the smallest amount will trigger violent sickness.
Emma Clarke Conway from the Coeliac Society advises anyone with symptoms to request a blood test and a biopsy.
“Don’t ignore it. We are aiming to educate the medical profession as we find that children end up in casualty with stomach pains and it’s not being picked up. A lot of people diagnosed are not told that their families should be checked too,” she said.
The society have launched an ambassador programme and plan to launch a coeliac youth group in Ireland. See www.coeliac.ie