Very early on in my son’s Coeliac Disease journey, I realised that what he, and also me (the mother who was his main guide on this journey) were going through was a grieving process. My son’s life was changed forever with those words :
“You have Coeliac Disease and it is a life-long condition that requires you to be on a gluten free diet for the rest of your life.”
We were on a roller coaster ride experiencing a full array of emotions: sadness, disbelief, fear, anger and loneliness. We had our tears, our sleeplessness nights, our withdrawal into our safe gluten free cocoon, angry words and silence.
My youngest had lost something: his normality, his life as he knew it. He just wanted “to be normal.”
As adults we forget about the rituals and traditions that are tied to food. It can be something as simple as tuckshop on a Friday or a sausage in a blanket after Hockey training. It can be grandma’s lasagne at Christmas or a McDonald’s quarter pounder with your friends.
And suddenly things have to change. The look, texture and taste of food changes. Familiar snacks change. Eating routines change and traditional foods transform.
Suddenly your teenager has to grow up. They have to advocate for themselves when away from home. They have to learn how to talk with their doctor rather than their mother doing it for them. They have to learn to explain how they are feeling or to articulate to their parents when to back off and not make a fuss at the restaurant or the family celebration.
I am sure that you will find common ground with these stages and emotions.
Teenager: I feel fine now. My symptoms have gone away. Anyway I don’t get symptoms all the time.
Parent: Maybe he had a false positive on his blood test.
Teenager: It’s all your fault mum because you made me get a blood test. I just want to be normal.
Parent: Why did his two GPs and the paediatric gastroenterologist fail him? Why wasn’t this diagnosed 12 years ago when we took him to the specialist? Why didn’t I push the issue all those times we visited the doctor when he had stomach cramps and diarrhoea ? Why did I let the doctors treat me like a neurotic mother who didn’t know what she was talking about?
Teenager: If I just stop eating some gluten, then I’ll get better and everything will be okay.
Parent: To doctor and specialist- our son is going on a school language tour to France in 8 weeks and we don’t want to change his diet dramatically just now! (We did develop an interim transition plan)
Teenager: I just want to be normal. How many more blood tests do I have to have? How many more endoscopies do I have to have? For the rest of my life? I don’t want this.
Parent: The next two and a half years while he is still at school are going to be hard going for him. Lunches are going to be an ongoing challenge. How do I make him a happy teenager again?
Teenager: It’s okay, my friends understand. I’d love a piece of normal white bread, but I won’t cheat because I don’t want to suffer the consequences. I do have choices. I can have a social life.
Parent: I can do this. I can make a gluten free bread even though I have never made bread before. I can find the time to make wraps, sushi, slices, granola, pancakes. We can get through this.
Somewhere along the way, my son has learnt to take control of his life and not let coeliac disease control his life. He has had sleep-overs and negotiated with his friends what he can eat so that they sort things with their family. He has had a long weekend camping at a folk festival with a friend and his family and managed to eat gluten free and make good choices. He has roamed the streets of Paris with his brother and found something, somewhere to eat that was gluten free and safe. He has gone to a restaurant with friends and learnt to negotiate the menu and find something gluten free.
And along the way, I, his mother has had learn to step back and transfer control for his well being from me to him.
Are we there yet? I am not really sure where we have to go or how far. What I do know is that there are many more hurdles on this journey.
How is he going to eat gluten free while on “Schoolies”?
What happens when he moves away from home for university or work?
Teaching my son to take more responsibility with meals and teaching him the gluten free way around the supermarket.
Helping him not be embarrassed or angry when I question a menu item when eating out.
The journey continues but the roller coaster isn’t going as high or as low as it did 12 months ago. Some weeks it is all smooth riding on the straight tracks. And thankfully there aren’t so many dark tunnels to negotiate.
I hope also that your roller coaster ride isn’t as scary anymore.