My eldest daughter has Coeliac disease.
Coeliac disease is a permanent, autoimmune disorder that causes a reaction to gluten which is found in wheat, barley, rye and oats.
She is 7. She was diagnosed at two and a half years of age. We got the letter while living overseas for a short period of time. My brother took a photo of the mail from our GP and e-mailed it to us. It said she needed to have a biopsy for a confirmed diagnosis. On return to New Zealand, she had her first biopsy just a couple of months shy of her third birthday. I remember the phone call from the paediatrician telling me the diagnosis. I remember a huge wave of relief, finding out we weren’t crazy, that there was an answer to the puzzle of why our little girl did not gain weight as a baby since going onto solids. Why she was off the charts on the centile’s from birth, was 7.2kg on her first birthday, why her health and various symptoms had everyone puzzled. After the phone call, my partner felt the next emotion, overwhelmed. Facing the daunting task of learning exactly what a strict gluten-free diet means for our family with two young children. We became avid label readers. Coeliacs NZ members, Coeliacs NZ Facebook group members, Bin Inn and Commonsense organics browsers.
Whilst on this steep learning curve we decided on another addition to the family also. We had a new kitchen and dining room of course so we had the room and family support to grow our family. By the time our youngest was born, we had three under four.
Our eldest had one more follow-up biopsy 6 months after the first one when she was 3, to see how she was responding to her strict gluten-free diet. I went into the theatre with her for this one as her Dad had gone in with her for the first. It is terrible and such a hard thing to watch your child go into theatre. It’s the talking about it with the anaesthetist and surgeon or gastroenterologist and consultant that makes it hard for your child I think. The talking about it and around it, the inevitability of the action. The mask. That gas mask being put over their face is the last thing that happens so you want to be there for everything up to and including that point. I took a tip from my Mum for this part – who happens to be a Clinical Psychologist, specialising in working with families – on something to use when you want your child to be calm.
Smell the flowers and blow out the candle.
Our eldest and I had done this at home together a few times. I had even drawn a flower and a candle on the window with a window-pen at home at her height, so she could do it, so she could visualise it. Smelling a flower, breathe in through your nose; and blow out the candle, breathe out through your mouth. Slow. Deep. Breaths.
I said these words to her before the mask was presented and as it went over her face. I probably had tears in my eyes, but I needed to be calm and confident for her, and completely present with her. I could cry once out of the room. It was a standard procedure, all to see how well she was doing on her gluten-free diet.
One stand-out experience we’ve shared on this journey together was probably in those first six months of the diagnosis. We went to Playcentre. Playdough abounds. Just to be sure this wasn’t a contact reaction thing, we made gluten-free playdough on our sessions. And for kai prep, it was a separate gluten-free mixture for our eldest. One session that I dropped her off for, they’d made something to eat but without gluten-free flour, substituting spelt flour. Frantically googling before she took a bite, I couldn’t draw a conclusion on whether it was safe or not for coeliacs.
My eldest said, “______ said it was OK.”
And I said, “I know, but they don’t know. They don’t know your body like I do and what it needs. Parents and adults will tell you that something is OK, but for now, you just need to check with Dad or me if something is OK to eat or not, alright?”
She said, “OK” and slumped back down into the double-buggy.
I could see tears forming in her eyes, that she was hurt, that her trust in another adult was doubted, that her trust in herself was doubted, that she was frustrated at having this *thing* about herself now, that she couldn’t yet understand. I felt everything for her at that single point in time. I didn’t understand it either so I bundled her up into a big hug and had a cry with her right there in amongst the buggies, scooters, lunchboxes, jackets, wet clothes, tired babies; while families left Playcentre for the day.
It’s a long journey, a life-long disease. But I’m glad we found out and got an answer early on in our daughter’s life so we can walk it together.