Over the last year we have had some difficult times with Chloe. We had roughly ten months of constant illness. Sickness, daily bowel upsets, a persistent cough and extremely disturbed sleep added up to a drained and miserable toddler.
It took it’s toll on us as a family, we were all tired including Izzy who was woken most nights by Chloe’s cries of pain. As a couple we were constantly exhausted and snappy. My health took a downward spiral, my depression became worse.
Chloe suffered the most obviously. She was clingy, wanting to play but tiring after a few minutes and asking to be held.
She always looked unwell, red eyed and exhausted. Even when she did sleep she frowned and grimaced through it.
We tried lots of things. A strict diet free of dairy, wheat, eggs, milk and soya. Reflux medicines, asthmatic inhalers. Nothing seemed to make a difference. Chloe had blood tests and stool samples taken and as things continued she had a Barium Meal and endoscopy and colonoscopy procedures under general anaesthetic. I honestly don’t know how people cope when their children have to have procedure after procedure and operations and tests for a long period of time. Because it is scary. A routine test which would not worry you at all if it was on you can seem terrifying when it’s your child. Your baby.
It took a long time but we have an almost definite diagnosis of Coeliac disease. I say almost because due to the fact that she had cut almost all gluten from her diet for the weeks leading up to her scopes it was impossible to confirm 100% but the extreme damage shown to her stomach and bowel definitely look like CD.
The consultant isn’t willing ( and neither are we ) because of the damage to her little body to attempt a reintroduction for the purpose of another test until she is 5 years old so until then she is to follow a completely gluten free lifestyle.
And it’s quite hard.
To completely avoid gluten. Because it is in EVERYTHING.
Things that shouldn’t contain it do. Items made in the same factories contain a chance of cross contamination and we have discovered that she is so sensitive to gluten that she can’t even tolerate this minor amount.
Things at home have had to change. Chloe has her own chopping board. We use toaster bags for her toast and if we use baking trays or utensils for non gluten items they are scrubbed with vigour.
Of course we have slip ups. In the first few weeks she snatched some toast from Izzy’s plate and was ill for 5 days. Another time she was sneakily handed a piece of muffin from Izzy at a coffee shop. Again she was ill for a good few days.
Izzy is learning. As are we. It’s a hard lesson for a child to learn but she’s starting to understand that it does make Chloe very ill.
To make life easier for them both, we now give them the same bread and I make cakes/treats suitable for them to share. When I make meals I use gluten free pasta, gf flours in our gravy,special stock cubes etc. But to go entirely gluten free as a family is expensive and is it selfish to admit that I would miss it?
Gradually we are switching over to more gluten free foods and I’m cooking from scratch far more. Which can only be a good thing.
But the really great news here.. is that Chloe is getting better. There has been a huge improvement. She is starting to sleep. She is more comfortable. She lies sprawled out in a deep sleep, a far cry from the curled up foetal position of a child in pain from a few months ago. When she cries out at night it’s a normal cry, not a sharp wail. There are no more nighttime vomits – she has even stopped her reflux meds.
She eats more. She is happier. She can run around all day without needing a break. Her cheeks are fuller and rosy. Her eyes bright and shining. No sunken shadows. There is a little baby fat around her belly. She is a normal toddler.
We have successfully re introduced eggs with the hope of reintroducing dairy and soya slowly over the coming months which will make meal choices that little bit easier – the reintroduction will more than likely not work but fingers crossed.
Life is slowly becoming what it should be. Chaotic and busy with two small children. Two healthy and happy children. What more could you ask for?
It’s lovely to see the “after” pictures of her looking so bright and happy without gluten in her diet, you can really see the difference . Well done to you all for persevering in getting a (nearly) diagnosis and all the best with adapting to her new diet. Given the fabulous things you create with gluten in, I’d imagine you’ll come up with some delicious GF recipes.
Thank you Charlotte – it’s such a relief to see her get an appetite and just be happy. I will try my best on the GF recipes. Xx
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Ah that is great news!