Our Gluten Free Story


My 5 year old daughter and I both suffer from coeliac disease (an auto immune disease). I am hoping that our experiences may help others, especially parents of small children, deal with the condition. To help explain what I am talking about, here is an extract from Coeliac UK’s ‘Gluten-free living for adults’ information leaflet...

“Coeliac disease is not an allergy. It’s an auto immune disease, which means that the body produces antibodies that attack its own tissues. In coeliac disease, this is triggered by eating gluten, a protein found in the cereals wheat, rye and barley. Some people may also be sensitive to oats.

When people with coeliac disease eat gluten, the lining of the gut becomes damaged. Tiny, finger-like projection called ‘villi’ become inflamed and the flattened, leaving less surface area to absorb nutrients. People with undiagnosed coeliac disease can, as a result, have a wide range of symptoms including nutritional deficiencies.

Around 1 in 100 people have coeliac disease – although it remains under-diagnosed.”

I suffered with a whole host of digestive symptoms for nearly two decades, pretty silly I know, but at the time, there always seemed a logical explanation. During my 20’s, I put the symptoms down to the stress of having a highly pressurized (although enjoyable) job, in my 30’s I thought it was as a result of having two small children. Tiredness is an everyday condition of having a baby and a toddler, right?!

It was only after I began to only have a few days off between symptoms, started to suffer hair loss (as in the bottom of the bath began to be covered with hair after every time I washed it!), coinciding with nasty rashes that I finally went to the doctor (yes, Mum, you were sooooo right, I should have listened to you years ago, lesson noted!).

Anyway, to cut a long story short, I was diagnosed and now follow a gluten-free diet which has made an enormous difference to how I feel in myself, both physically and mentally. I can’t say that making the transition was easy; in fact it was pretty tough, especially for someone like me who loves her food! But it was, and is, worth every effort. Thank you Mum, you have been a rock and amazing at every step and Jum, my lovely husband, thank you for all your patience and support, you are the best!

All about Evie

Evie started to show symptoms when she was about three. She was always so white and seemed to catch every bug going. I put this down to starting nursery, being exposed to lots of other children. In hind-sight, her poor little body was being drained of nutrients, leaving her vulnerable to catching everything going.
She began to have tummy ache almost daily – she was also sick a lot, and I mean a lot. We took to leaving an empty ice-cream box in her room at night and bless her, she got so practised at catching it, she never spilled a drop! I can make a joke of it now, but at the time, it was horrible.

Her pains began to escalate – always at night. To start with, I thought she was playing on it to get attention, how wrong I was. Always listen to your kids, what does a three/four year old know about doing that? She began to wake up and flick about in the bed like an electric eel, the pain was so bad, it was hideous for all of us. I took her to our GP; she was amazing and put into place a course of action to investigate immediately.

Last Spring/Summer, Evie had a barrage of tests at hospital to check for all manner of conditions. Bless her, it was pretty scary for her, all these big machines and procedures. In-between, she continued with her school and normal life – bouncing back as kids do. I used to wake up at night in a cold sweat thinking about what it could be.

In September 2012, after anything scary had been ruled out, she was finally diagnosed with coeliac disease. Was it a surprise? Yes and no. After all that, I have to say, I was pretty relieved that was what it was. There was no need for medicines or operations. In the grand scheme of things, we are lucky.
Eight months along and Evie is doing great. Her bloods show that she her body has not yet restored itself to where is should be, but in general, her health and mood swings are much better. She is on the right track and will not hopefully suffer and long-term effects as she was diagnosed so young.
I on the other hand, have been left with thin patches of hair (luckily hidden as I have messily curly hair!), Osteopaenia (which is a thining of the bones, in my case due to years of not absorbing enough calcium), and a Haitus Hernia (which may or may not be related). So please, please, if you think you, or any member of your family are suffering with coeliac disease, visit your GP, today. This is an easily managed condition once it has been identified. Visit http://www.coeliac.org.uk/ for further information and advice.
Read more about how we deal with our daily gluten-free challenges on the 'Gluten Free Daily Challenges' tab of this blog...
Evie's photo was taken by http://www.louisejolleyphotography.com/

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