A warm, sunny July morning. 6 week old baby in one arm, preparing my 4 year olds breakfast with the other (a bowl of Weetabix – adding the milk seconds before delivering it to the table so as “not too soggy, not too hard”…ffs) I remember the moment Peggy first showed symptoms of Coeliac Disease like it was yesterday. She started to scratch her scalp and neck. A vision of the sign stuck to pre-school’s door yesterday flashed before my eyes ‘Warning! A case of Head Lice has been reported’. Like a mother Guerrilla pruning her young I began riffling through her hair in search of the bloody things and wondered when the hell I was going to find time to de-bug the entire family whilst nursing a new born and renovating a house (although did consider that this would force me to finally wash my hair). I spotted the rash across her scalp and eyebrows. When I removed her pyjama top the red, slightly raised rash was across her torso. I bundled her up in her dressing gown and slippers and carted her off to the fountain of all knowledge – Grandma. Mum, being a nurse, took one look and thought it was Hives – an allergic reaction to something she had consumed or been exposed to. Other than the rash Peggy was in fine spirits – excited for her day out with Grandma to ‘Eureka!’ on the train. A detour to the pharmacy to buy Piriton and Camomile Lotion on route to the station and off they went. By the time Peg returned from her day out the rash had spread across her entire body, she had stomach ache and was lethargic. We took her to York A&E where, upon crossing the threshold and spotting the plastic toy house in the waiting area, the rash instantly calmed down and her stomach ache disappeared (why is that always the case!?) Thankfully we were advised to have her bloods taken, just as a precaution and sent home. The call came a few weeks later to go to the GP to discuss the results – which in all honesty was a real pain in the arse considering I had my hands full and she was obviously fine……when the words ‘Coeliac Disease’ and ‘Life Long Gluten Free Diet’ left the Doctors mouth it was like an outer body experience and my reaction was “But my husband has Crohn’s. Christ, will we ever eat out again!?”
Peg with rash on neck and cheeks
Symptoms of Coeliac Disease can vary from mild to severe, depending on the individual. Symptoms can include fatigue, headaches, depression, infertility, diarrhoea, iron deficiency and osteoporosis to name a few. 1 in 100 people have Coeliac Disease, but only 24% are actually diagnosed. This raises to 1 in 10 if you have a first degree relative with the condition. The only treatment for Coeliac Disease is a life long Gluten Free diet. To achieve an official diagnosis requires various blood tests and, in Peggys case, an endoscopy at Leeds General Infirmary – an incredibly invasive process which children are anesthetized for. Gluten must continue to be consumed to ensure the results from these tests are accurate. It’s so very hard to give your 4 year old food you think could be harming her. From ‘Eureka! Day (as we refer to it in our house!) to final diagnosis took over 1 year for Peggy. I thank our lucky stars that Peggy was diagnosed so young. The chances of her having another auto-immune condition (such as type 1 Diabetes or MS) are reduced from 34% (if over 20 years of age at diagnosis) to 16.7%. This week (May 14-20th) is Coeliac Awareness week and as part of the 50th Anniversary celebrations, Coeliac UK have asked their members to raise £50 to contribute towards their Research target of £5 million in 2018. We’re holding a garden party at which we intend to fleece our family and friends of their hard earned cash by asking them to buy GF baking and tote bags that Peggy has decorated!
Family O’Leary 2018
I write a blog about our experiences of having a (now 6 year old) with Coeliac Disease and a Husband with Crohn’s called “Will We Ever Eat Out Again” (www.willweevereatoutagain.blogspot.co.uk). I hope that by writing honestly about our experiences so far, sharing recipes and tips and logging our journey, we will raise awareness of Coeliac Disease, in turn increasing funding for invaluable research which will hopefully encourage a quicker, less invasive method of diagnosis in children.
We hope that by sharing our ‘Eureka!’ day story with the Mumbler community we’ll plant a seed in your mind. We’ll make you consider that perhaps the bloating, fatigue or sickness you or your child has been experiencing isn’t OK. That maybe, just maybe, you’ll pop along to the doctors after reading this and get things checked out. And if it does end up being a diagnosis of Coeliac Disease, I promise, you will eat out again.