This week is coeliacs awareness week! As you know Aars’ has recently had a strong positive on his blood test for coeliacs disease, as well as elevated white blood cell counts pointing towards an auto-immune issue. So we are at the start of our journey with the NHS and learning how to help and support children with coeliacs disease. He is seeing the paediatric gastroenterologist next week.
My Nana had coeliacs disease way-back when no one had heard of it. Eighteen years ago I had a kidney infection which hospitalised me for a week. I lost a lot of weight and could not put it back on no matter how much I ate I was under 7 stone, anaemic… My GP at the time asked if we had any family members who were diagnosed with coeliacs disease; as we did she insisted I cut out gluten straight away – no bloods were taken, no tests done but after three months of being gluten-free I slowly began to gain weight. She told me that I should cut gluten out of my diet for at least a month every year!! So that is what I did until a few years ago I got very ill passing a lot of blood and all the disgusting, unpleasant and painful symptoms of coeliacs disease and again had to cut it out immediately – there was no time to book an appointment with the nurse for blood tests, or stay eating gluten whilst I waited to see a consultant and have an endoscopy. The GP and I thought after three months I would be able to go back to eating gluten and could set the diagnosis ball in motion then.
But three months later – even the tiniest amount of gluten made me very ill; with severe digestive issues including passing lots of blood, it gave me severe headaches migrate-leave couldn’t shift. And so it continues. The last time I was gluten-ed or gluten-nuked it was at a well known place in London in February which is normally good at catering for different dietary requirements (you can read my tale here) I was basically served a chocolate drink with a small amount of barley in it. I was horribly ill, totally out of proportion to the two sips I drunk.
As a result of my inability to eat gluten, we have made a lot of gluten-free food, and I have shared many gluten-free recipes on my blog. Even though I am aware that allergies and anaphylaxis are very different to an auto-immune disease, it felt right to me to share them. I also posted many recipes using normal flours, but free-from eggs, dairy, soya… Now all the recipes I share will be gluten-free.
Last year, my mum was diagnosed with coeliacs disease (blood tests & endoscopy) and because she had such a high positive result, her consultant recommended that all her daughters were tested too. This year two of my sisters have been diagnosed with coeliacs disease too (blood tests & endoscopies). So there is a strong family issue!
Aars had a strong positive blood result, and because he was loosing what little weight he had, was exhausted and suffering from severe migraines… amongst other symptoms, our GP recommended he cut out gluten immediately whilst we wait for the consultant’s appointment. So Aars cut gluten out of his diet on the 18th March. After about two weeks his body began the process of clearing out the gluten in his diet. That is an ongoing unpleasantness for him. BUT about three weeks ago; a month after he cut gluten out he started to see some of the benefits of being gluten-free!! The headaches became less intense and less prolonged. His energy levels began to rise, he started to put on weight, then came the growing pains – which he was less keen on… But he has grown! His trousers are 2 inches too short for him suddenly, the internal buttons he has done up to the tightest point have had to be loosened as his hips have widened, he has put on 5kg of weight.
The other delight for him makes me very happy too. They are doing cross-country running in PE this term at school; they get to run through the local vineyards – and initially he HATED it. Always lagging behind amongst the last ten runners of sixty to finish the course. In the last three weeks he has enjoyed the run and finished in the top twenty of the sixty runners! BOOM! That for him is an incredible, tangible result of being gluten-free.
So I have been advised that sometimes when children have a strong positive blood result for coeliacs disease they don’t do an endoscopy but rather a genetic test. So we are hoping that next week when we see the consultant she will go for that option – rather than make Aars eat gluten for six months before going under general anaesthetic for an invasive endoscopy. I shall keep you posted.
In the meantime if you are living gluten-free I have lots of recipes on my blog which are very friendly for your gut – and your wellbeing in general. Because we have to be egg-free, soy-free and dairy-free our recipes are full of yummy ingredients like flaxseed and chia seeds which we grind up to help bind our gluten-free bakes together in place of gluten and egg.
Here are some of our faves for you to try and hopefully enjoy. Food is an essential part of life and living. I think it’s really important to be inclusive of those who can’t eat certain foods for medical reasons (not so into those fussy eaters who can but don’t want to). I also love food, love eating, love cooking and baking and feeding others. So I make sure that Aars’ doesn’t miss out on all the yummy treats others can just pop to the shop to buy; he enjoys food too. His food allergies, anaphylaxis and coeliacs disease are an opportunity for us to experiment and play with food together, creating yummy scrummy delights. I never want him to feel like they are burden or a hassle or a cross we have to bear (even if sometimes deep-down I feel that it is all really a little f***ing unfair!)
You can find gluten-free recipes on my blog free2bake.com by heading to the recipe index, and under dietary requirements choose gluten-free. It will pull up a load of gluten-free recipes which conventionally use gluten. Since Aars diagnoses I have been using a lot of coconut flour in our baking and macca powder to try and build him up – it’s clear that the food has been working and he has been loving the taste-fest in pancakes, muffins… as soon as I have tested the recipes enough times for them to prove themselves as sound I will post them on the blog for you all too.
For now here are some of Aars faves! The recipes are below, but here are some quick links for you: cinnamon edged shortbread, sweet chilli popcorn, apple & oat scotch pancakes, gooey chocolate cake, orange & choc-chunk cookies, crepes, raspberry & custard kisses, ginger flapjacks, pineapple upside-down cake. They are all gluten-free, egg-free, dairy-free, soy-free & nut-free BUT packed full of YUM. Hopefully one of them will tickle your fancy ;P
If you think you could have coeliacs disease, go visit the coeliacs UK organisation, there’s lots of helpful advice and even a little diagnostic tool when may help point you in the right direction.