This is the third post I’ve written in this series, 10 reasons I know my daughter has Coeliac Disease, 10 reasons I know my daughter has Type 1 Diabetes and 10 reasons I know my son has Autism. All three posts have been surprisingly difficult to write, I had expected the reasons to roll off the tongue or rather type themselves, as each condition has, after all completely taken over our lives. This was not the case; I’ve had a think about why that may be.
I wondered; is it that writing 10 things is an emotional experience for me? Well yes, I guess it is quite an emotional process, listing reasons why I’m reminded that Bethany or Lewis have the needs they have. But no, it’s not that. Is it because there are in fact no reasons that particularly stand out, that we are ‘normal’ and live our lives normally on a day-to-day basis like everyone else does*
*oh that false truth we tell ourselves that ‘everyone else’ is normal and we are not when in fact what-is-normal?
Nah! It’s not that either.
Eureka! I have it, it’s because I’m so used to it now, the reasons I know that Beth is Coeliac, or Type 1 or Lewis is Autistic are part of our everyday lives now. My Dad told me once that if you have a bucket of water and a cup and scoop a cup of water out of the bucket does it leave a hole? The answer is no if you were pondering (I really hope you weren’t pondering that!) In this case the diagnosis was the cup of water being removed; the disturbance to the water was the settling in period. Depending on how violently the cup is plunged into the bucket (how traumatic was the diagnosis) will depend on how long it takes for the water to go still. The stillness is the acceptance and adaption to your new circumstances and what you’re left with is a bucket with a fraction less water in it. The reduction in water signifies the energy used and lost to restore calm.
Well that got way deeper than I’d intended, but hopefully that analogy and visual picture can help you understand if this is unfamiliar territory to you or help you process if you find yourself in similar circumstances.
Let’s get down to the 10 Reasons I know my daughter has Coeliac Disease;
No more spontaneous stops at café’s or restaurants
One particular memory stands out of a day we spent in Brixham, it was a Sunday and we were on our annual family holiday staying in nearby Paignton. Last time I’d been to Brixham I was 32 weeks pregnant with Bethany. I didn’t phone ahead. I should have phoned ahead. We ended up searching for an hour for a place to eat and Beth’s blood sugars were suffering. It had been such a lovely morning but I now felt like a failure for not following up my research with a quick call, and have never felt so far away from home in my life, my safety bubble home.
This was years ago now and I’m sure Brixham is much better at catering for free from diets. In fact, I’d love to go back again so if you know of any places of interest then name drop below in the comments. There are of course lots of similar disappointments I could draw upon and with Bethany being diabetic too we have the added issue of needing to pack snacks as we can’t just nip in somewhere to prevent or treat a hypo. This memory really stuck in my mind though, probably because selfishly I was in before and after mode. The before was me 32 weeks pregnant full of hope at being a new mum and the after, our new reality.
Keeping emergency snacks on board
So I’ve already mentioned snacks above but I’ll say it again; snacks, snacks, snacks. Woe betides anyone who tells me off for Bethany eating something in their café that’s not been purchased on site when they don’t cater for her and she’s in need of something to eat. I have a wet fish for that person and I’m not afraid to use it.
I’m actually giggling now as a memory just flashed before my eyes, it was me throwing away my HUGE mummy bag. The sort that carried nappies, bottles, muslins, bibs, nappy sacks, finger foods. I was so happy to go back to a normal sized bag that I could throw over my head and across my chest. With the addition of a Coeliac diagnosis when Beth turned 5 I was well and truly back in the land of HUGE bags. Gluten free snacks, low carb snacks, high carb snacks, snacks, snacks, snacks!
Dealing with rejection
This is a difficult one to write, I’m referring to the rejection Bethany experienced growing up. She’s still only a child, okay a teen but those days of large birthday parties have gone. For Bethany they never really started. She was invited to three birthday parties THREE. I catered for Bethany separately for each of them. Bethany may only be 14 years old but to talk to you’d think you were speaking to an adult, she’s grown a thick skin over the few years she’s walked this earth.
Another form of rejection is the times we go for a mummy and daughter day out which always includes a coffee shop stop. I cannot tell you how many times we’ve been disappointed to find that the gluten free cake options have sold out or just not been replenished, this is particularly difficult as we go to these cafés because we’re confident they’ll cater so it’s especially upsetting to find they don’t on these occasions. Actually, while I’m on the subject of mummy daughter days, I’ll drop this link here to our awesome Gluten Free Afternoon Tea at our local café, in fact, I’m in that very same café now editing this post. The Pavilion were amazing at catering for us and we’re planning on returning again soon for a treat.
Those break your heart moments
There’s one particular time that stands out for me, hands down winner. It was when Bethany was much younger. Along with my sister and her two sons Bethany, Lewis and I used to go to the local Messy Church every Wednesday. There was a lovely, super, wonderful lady called Penny who had a Coeliac daughter and would make sure every week that Bethany had her very own special dinner and pudding. My heart melts as I type this, I loved Penny and I hope she is well. Penny left and moved down south.
We continued to go to Messy Church a couple of times after Penny left but I took our own food to heat in the churches microwave. One day one of the volunteers (who was not the nicest of people) made me feel like Bethany was an inconvenience in such a way that I stood outside the church and sobbed while my sister stayed with the thankfully unaware Bethany eating her reheated dinner. Never had I been made to feel this way in the three years Beth had been diagnosed, it was a shock and my heart ached for Bethany and the future she had ahead of her with people like this judging and un-accepting of her needs.
Experimentation with food
This is kind of how the blog started to be fair, trying this, having a go at that. Then throwing things in the bin or leaving them out for the birds (I’ve found out the hard way that my birds are very, very fussy and don’t like many of my baking fails). Something I struggle with is that my beautiful daughter, who weaned like a dream and would eat anything put in front of her, has become the fussiest fuss pot known to mankind.
Following her diagnosis Bethany became weary of foods and, despite my best efforts, started to avoid new foods and eventually the ones she’s always loved previously. Experimenting with foods and introducing new meal ideas is a stressful business and I’m afraid to say I’m not always in the best of mental health to have the motivation and staying power to see things through. Nonetheless, experiment I shall (all thanks to Glutarama for keeping me on track) and eventually Bethany will enjoy a variety of nutritional foods and treats…one day.
‘I don’t like Mr Kelloggs’
Just to clarify we don’t hate Mr Kelloggs, I’m sure Mr Kelloggs is a very nice man, however, Bethany was about 6 years old and standing in the cereal aisle in Sainsbury’s when she said this and it was another break my heart moments. In fact, I think I stopped taking her to the supermarkets after that incident, I just couldn’t do it to her. I’ll never, never forget her face. I’d always done my shopping online since the children were babies so the supermarket was quite a new experience for Bethany.
‘mummy can I have this?’
‘no darling, that’s not gluten free’
‘what about this?’
‘sorry darling, that’s also made by Kelloggs and none of their cereals are gluten free’
….’I don’t like Mr Kelloggs’.
As I saw her eyes wide with envy at all the choice she did not have, I decided there and then I’d do my best to prevent a repeat performance. I know, I know, how unrealistic a deal that was to have made with myself but I had to try. I can count on one hand the number of times Beth’s been back with me to the supermarket since.
Rearranging your kitchen
I am very lucky and have a large kitchen; it wasn’t always large though. Having to rearrange the workspace to accommodate gluten free toasters, and space dedicated to gluten free preparation proved difficult. I also have the added issue that my husband seems to prepare his food like the Swedish Chef from The Muppets and a Hitchcock-style death by bread crumb scene is left in his wake. To be honest, in the early days I made us all gluten free, it just made sense to me and created less stress regarding cross contamination. I was later to realise that this was not fair on Lewis and have since changed us to a gluten filled and gluten free family.
Now that I’m confidant it’s a breeze, but before it was just another worry I couldn’t cope with. I even labelled shelves in the cupboards and the fridge and freezer; these too have long since been removed. Now I’m fortunate to have a whole double cupboard for Bethany’s foods and all my baking is gluten free, we’ve had no gluten containing ingredients in our house since 2008.
Expensive weekly shops
There’s plenty of articles out there already on how much free from foods cost in relation to ‘normal’ food. We used to get prescriptions and I was always so grateful for them, but as free from shelves grew in the supermarkets I knew that Bethany’s prescriptions would come to an end eventually. To be fair, the majority of the foods I get from the free from aisles are packaged snacks for emergencies, bread, cereal and crackers. I never buy something in the free from aisles that I can get half the price elsewhere in the store and as I’ve mentioned Bethany is so fussy that lots of the foods on offer just wouldn’t be eaten anyway. It does increase the weekly shopping bill, there’s no doubt about it and it also means that I can’t do all the shopping in one place because I tend to shop in Aldi but still have to go to Sainsbury to get the free from foods.
Bethany had to develop a main course meal with a side dish in school a while ago, all for under £5. It was a useful exercise for her to do to appreciate the difference in cost, we worked out what a gluten filled meal would cost in comparison and whilst her gluten free meal came in just over £5 for a two-person meal, the gluten filled meal would have cost £3.50.
Phew, so there you have it. In no particular order, either of importance or timescale, it’s just a list of 10 reasons I know my daughter has Coeliac Disease and the impact it has on the family.
Did any of this resonate with you? Have you had similar experiences, better or worse? I’d love to hear them, it would be both reassuring to me to know we’re not alone and I’m sure fellow readers would love to hear other experiences too. Please feel free to scroll down and comment below.
And one last thing! I’ve linked 10 reasons I know my daughter has Coeliac Disease with these other awesome bloggers pages, go check them out
disclaimer: with all of my ‘behind the scenes’ posts the same guidelines apply, I am not a trained medical professional, I’m a mum, a bloody tired mum but a damn good one too. All the ideas, thought and opinions in these types of post relating to Type 1 Diabetes and Autism are my own unless I have referenced a professional or piece of evidence to make a point.
If you’ve only just happened across my blog Glutarama, then you may also be interested to know this is not the main topic I write about, the majority of my posts relate to free from recipes and reviews, as our family are affected by Coeliac Disease, egg, dairy other intolerance’s it keeps me busy in the kitchen, but boy do I have fun experimenting for my family and followers.