Living with coeliac disease
It was the summer of 2008, I was six months pregnant with our second child and our toddler had just been diagnosed with Coeliac Disease. I was devastated!
My husband and I didn’t know what lay ahead of us, but at least we had an answer for all the bedtime vomiting, the rancid nappies and the pale, wan child that we were so desperately trying to make better!
Siún is ten years old, the eldest of our four children, and was diagnosed Coeliac at eighteen months old.
Never ending sickness
Siún had not been herself following an ear infection in the April 2008. As she is our eldest, we naively thought it was the teething process that was causing the rancid nappies; we hadn’t noticed the gradual weight loss and pale colour that had developed and we initially thought the vomiting at bedtime following her last bottle was a tummy bug. My parents had come to stay and as they hadn’t seen Siún for a few weeks, the palour and weight loss was very obvious to them. I then realised that she had become lethargic and that there was a general sickly appearance to Siún.
It must be said we hadn’t completely ignored the symptoms: my husband Grahame had taken Siún into Temple Street Hospital a couple of times following the unexplained vomiting and the nappies, but these were put down to ‘viral infections’.
We then brought her to the GP (three times in one week) as nothing was improving. The GP then decided enough was enough we had to have a Paediatrician referral. This was a relief as we were on the road to solving the mystery.
After numerous test gave the all clear we were relieved but the blood tests indicated strongly that Siún had coeliac disease. This was confirmed by an endoscopic biopsy (the Gold Standard of testing for coeliac disease) so we embarked on our gluten-free journey.
Then came diagnosis
Grahame and I were both upset and relieved to have the diagnosis, but once we established the gluten free diet for Siún she began to thrive and improve immediately! Her colour came back, her energy improved, the vomiting and rancid nappies ceased and she was looking healthy again.
The gluten free journey is rocky and for us, as her parents, it was difficult to get used to. Joining the Coeliac Society of Ireland was helpful so that we had ‘the book’ (Food List) as a guide whilst we found our feet with shopping for food. The Food List is helpful for grandparents and other family members, and also for teachers for treat ideas.
When catering for a coeliac in a family situation, it means that we all eat gluten-free where possible. Siún has her own bread, biscuits, cakes and breakfast cereals, but everything else is the same as the rest of us. After all, meat and two veg is gluten free! Care is taken to prepare Siún’s school lunch first every day and we also have a separate butter dish for her as well as her own toaster.
Little habits had to be adopted such as using a spoon to extract jam from the jar so that cross-contamination cannot occur and storing all the gluten free items in one dedicated cupboard or separate shelf in the fridge. Any birthday cakes required are all home-baked gluten free, preventing any risk of Siún breathing in and thus ingesting regular flour.
It was challenging however, when attending family functions or birthday parties trying to ensure there was suitable food and treats available for Siún. I found it very frustrating even though we would have explained Siún’s condition, often times she would be left out of the party with no effort having been made to include her. It really isn’t difficult: a muffin instead of birthday cake, a few carefully chosen sweets or lollipops and everyone is happy!
As she grew older Siún preferred not to take a chance on there being gluten free options for her when going on playdates or to friends birthday parties and was quite happy to bring her own little bag of supplies. I have learned that as long as Siún is happy, the journey to that point is not relevant.
Life gets easier
Nowadays almost every school friend’s birthday party and family event we attend, has Siún’s dietary requirement catered for! As her parents, this makes Grahame and I very happy and relaxed, as there is nothing worse than seeing your child disappointed at a birthday or playdate! We have noticed a vast improvement in availability of gluten free food options in the supermarkets and when eating out (when we get out!).
A lot of restaurants and hotels cater for the gluten free diet, however I have heard of some establishments with gluten- free options available that are unsuitable for coeliacs! This is very annoying and generates confusion surrounding coeliac disease. All gluten free food should be prepared suitable for coeliacs – there should be no doubt! It is frightening when some eateries say they have gluten-free options but that your child with coeliac disease could still be poisoned!
Getting ‘glutened’ is not good
Recently Siún did have a ‘glutening’ experience whilst out for a pub lunch in the UK. I had spoken to the staff and they had produced a folder with all their available gluten-free options. I was assured the burger was gluten free and was told that the chips were gluten free anyway. They were not!
Our suspicion is that they were fried in the same oil as their breaded goujons and battered food. That evening as Siún was going to bed, she vomited violently all over her cousin’s landing, reminiscent of how it was pre-diagnosis.
Grahame and I knew it had to be the lunch. This battle will unfortunately need to be fought by Siún every time she will want to eat out. It is a way of life that I am confident Siún will adapt to very well; however as her mother I wish it wasn’t so.
The expense of gluten free food in general is unfair and despite the rise in diagnoses of coeliac disease, there doesn’t seem to be a reduction in the cost of gluten-free groceries. On the other hand, we as a family eat home cooked meals every day. Grahame is an excellent cook and ensures that we all eat healthily, and that we all eat the same food.
We have not looked back since Siún’s diagnosis. Physically she is almost as tall as I am and keeps threatening to take my shoes! All in all, our daughter Siún has not allowed her coeliac disease to define who she is or how she lives, which makes us very proud. We hope that the rest of society will catch up and realise that coeliac disease isn’t to be feared but merely understood.
Siún’s Guide to Gluten-Free
For as long as I can remember I have been Coeliac. I was diagnosed when I was eighteen months old, so I don’t remember not being Coeliac.
I have to be careful with what I eat: if I eat food with gluten in it I could get sick. Another way that I know I have eaten some gluten is when I get pains in my tummy. These pains can take a while to go away.
When I go to my friends’ house, I always ask if what we are eating is gluten-free. I am lucky as all of my friends know that I am Coeliac and only give me gluten-free food. However, it wasn’t always like this. In the earlier years, when I was invited to birthday parties, I would usually have to bring my own supply of gluten-free sweets and cake. Once I forgot to bring a gluten-free option instead of the birthday cake and I had to do without. This only happened once!
I have lots of options now
Before everyone knew I was Coeliac, my Mum or Dad would contact my friend’s parents to make sure that there would be a gluten-free option for me. As I got older, my friends (and family) learned more about coeliac disease and are now prepared for when I visit. This makes me happy amd I feel like every other little girl/boy on a playdate.
- Shop around for your gluten free food! Each supermarket will stock different brands and types of gluten free foods; the prices can vary also. My personal favourites can be found in Aldi, Dunne’s Stores and Tesco. SuperValu has some good options also.
- Some of my favourite foods are: BFree bread, bagels and wraps; Goodness Grains bread; Juvela white rolls; all of Aldi gluten free biscuits; Schar ‘Saltí’ crackers; ‘Go Free’ Honey Flakes and Corn Flakes by Nestlé; Schar’s version of twix called ‘Chocolix’; Goodness Grains Cinnamon Rolls (Yummy!); pasta, spaghetti & lasagne sheets from the Tesco ‘Free From’ range; Clonakilty Sausages Gluten Free Ispíní; Green Isle gluten-free oven chips and Birds Eye waffles.
- I also like to bake with Sowan’s gluten-free scone mix, brownie mix and fairy cake mix.
- My Mum usually bakes all our birthday cakes using Odlums Tritamyl white bread mix and flour blends such as those from Dove’s Farm and Juvela.
- If you like pizza, Dominos do a great take-away gluten free pizza! Although small, it is yummy!
- If you are unsure of what you can/cannot eat, check the ingredients! Always read the ingredients: if it says ‘may contain gluten’ I wouldn’t take the chance!
- At home, make sure to have your own toaster and butter dish. ‘Squeezy’ bottles of honey, mayonnaise and sauces – such as ketchup or BBQ sauce – are safer and prevent cross-contamination.
I hope this helps you on your personal gluten free journey. Once you know how to keep yourself gluten free, life as a Coeliac isn’t so hard.