HELP! MY CHILD HAS BEEN DIAGNOSED WITH COELIAC DISEASE
First of all, you are not alone! My eldest daughter Alyssia has Coeliac Disease. As a family we have experienced massive wins and continue to pick ourselves up from the low points.
I have been wanting to get my initial experience down in writing for months now, if I help 1 other parent of a Coeliac child prepare for what is ahead then I will be delighted.
Here are my thoughts and suggestions to help you through the first 18 months post diagnosis.
Educate yourself and be prepared to educate others
People will say ‘It’s an intolerance, gluten is natural it won’t harm’.
Wow, I wish! There is no “A little bit Coeliac” You either have Coeliac or you do not. It only takes a crumb of gluten to trigger the autoimmune reaction in the small intestine of someone with coeliac disease and people wont understand this unless you explain it to them.
This goes for daycare centres and School to, don’t expect your teacher to know anything about Coeliac disease, they need to be all over it and you need to help them.
Education is key, if you are looking for a good place to grab the facts check out The Coeliac Australia Website it’s full of facts that you can relay to others. I will of course do my best to share their info here on Love Your Health too.
Cross Contamination – It’s a thing!
I love my friends. Some of those lovely friends have in the past baked something Gluten Free especially so Alyssia can eat it. My issue is that, I cant completely trust that there hasn’t been any cross contamination. “Was the cacao powder GF? Did they use clean utensils, equipment? Did they use butter which has already got Gluten toast crumbs in?” Personally I just can’t take the risk and so always politely decline and try to explain (educate) why. Good friends will always understand and not be put out.
Excuse peoples lack of understanding. We need more awareness!!
‘What will happen will she just be sick?’ How severe is her allergic reaction?’
“She’s not allergic – ‘shes Coeliac which is an auto immune disease.”
People with Coeliac disease can all have different symptoms. Alyssia may not feel sick immediately, we may not see any symptoms, however the damage is still done to the Villi located in your small intestine. When your Villi is damaged it means your body will struggle to absorb the nutrients your body needs to function correctly. This can cause serious short term and long term health issues.
People often expect, vomiting, hives, screams and panic. Often the damage is done in silence.
You may worry others may not take it as seriously as you do?!
Sadly I find its best to always be on my guard.
We’ve been lucky have a wonderful chef we could count on at Alyssia’s daycare centre, but we’ve still had a few mishaps when casual team members were not educated or reminded of the importance of Alyssia’s strict diet. She’s been handed gluten crackers by a new person before being told to quickly spit it out when the error was noticed. Cue – heart palpitations from me.
On another occasion she spent one glorious afternoon playing with coloured dried gluten filled pasta. Again cue – heart palpitations when we saw the pictures and then witness the food coloring around her mouth because she’d been sucking it!! Of course she was sucking it, to a 4 year old they looked like Candy!
I’ve had strangers hand over food or advise their child to share their biscuit with Alyssia. It truly is amazing how quickly you can fly across the playground whilst carrying a baby and a coffee to knock that bloody biscuit away. However I warn you, doing this is likely to create tears, screams and panic and that is just from the stranger who handed over the biscuit. The kids reaction is worse.
When eating out never assume that label stating ‘Gluten Free’ means the food is Safe for Coeliacs
The amount of times we’ve waited for ice cream, only to have the person serving be unable to provide assurance the product is in fact 100% gluten free. Sometimes we are asked what is gluten? Why would it be in ice cream? Before offering us their liability warning script. It’s likely your child already loves Ice Cream so prepare yourself for a meltdown when you have to leave empty handed, having just queued up for 5-10 minutes.
Other times a waiter has advised us the food is definitely gluten free, but when you ask how it is prepared you realise it is cooked and stored in the same oil/pan etc as other gluten foods. Again – for us not worth the risk. We would suggest it’s not for you either. If we’re required to eat out then we will take a microwave ready meal for Alyssia. She’ll often devour the Spaghetti Bolognese. I give strict instructions to the kitchen staff to microwave I the packet and pop on a clean plate.
Eating out doesn’t always mean go to a restaurant
Fortunately for me the joy of eating out diminished with having 2 babies 13 months apart and so the opportunities for that were already reducing as we opted for the easy life. Our family time consists of picnics which I can safely prepare myself and who doesn’t love a picnic right?
We always take snack foods with us in case we are out longer than expected. If we’re local then we’ll come home for lunch. I know some of my friends feel a bit sorry for me as eating out is a nice break for them but that’s not our life anymore and we love being outdoors – you can save money and the kids can run free!
However, recently we have discovered some awesome apps that will direct you to the nearest 100% Gluten Free establishment. I love For Gluten Sake ran by Carrie a Coeliac that has dedicated her life to helping other Coeliacs travel without fear of consuming Gluten.
It’s OK, all foods that are Gluten Free are healthy right?
Sadly not! Many healthy foods are naturally gluten free such as fruit, veggies and legumes etc. So gluten free diets are very healthy if you are cooking fresh products to create home cooked food. However many processed gluten-free products can be higher in fat, sugar, and calories and lower in fiber than their gluten equivalents. This is to improve its taste. Of course this can lead to weight gain and other diet related illness so be careful what you give your child. I have seen people in social media groups promoting Gluten Free Caramel cakes as “Health Food”.
You will need to educate your child again and again
As Alyssia grows its becoming more apparent that I cannot be there all the time and that continued education is key to being able to trust her.
We thought we’d nailed it with Alyssia. Recently we left her with a friend for a little party one day and had provided fruit platter and Gluten free treats and felt proud when we returned to find that Alyssia had sought out her Grandad as she was scared and upset that she was being fed gluten.
This all changed when she started Kindergarten and we were shocked to hear that Alyssia had started sharing food with her friends. She knew the risks but it seems this new found freedom of a playground and new friends to impress had led to her experimenting with their Gluten filled crackers instead of her own delicious Gluten Free lunch.
Because our daughter is not physically sick after Gluten consumption, I suppose she became a bit brave and thought it would be OK, maybe she asked “Is this Gluten Free?” and the reply from the other little girl was “Yes”
We have a daily mantra before School now “What is the number one rule?” “Don’t share food!”
Preparing treats for Birthday’s
Pre – bake cupcakes for parties and for school are a must for any family with a child that suffers from Coeliac disease.
I always have GF cupcakes stored in my freezer ready for a last minute party invite or social gathering that may include cake. There are 26 children in our daughters class, that is 26 birthdays through out the year and my heart breaks at the thought of our little girl missing out.
The only downside with always having cake in the freezer is, well temptation of course.
Praise when its due
Alyssia hasn’t been ‘glutened’ for a few weeks now and we’ve spent extra time discussing the risks and reminding her how proud we are when she doesn’t share food. We definitely under estimated the impact of coeliac management within the school day, so think it’s important that she is praised for sticking to her strict diet.
Hopefully these notes from my own experience can help you, but of course if you have any questions please feel free to leave them in the comments below and I will reply with my answers.