Late in her life, my beloved grandmother was diagnosed with coeliac disease. It was the early 1980s and “gluten free” was not the woke gastronomical term it is today. There was no gluten-free bread in the supermarket and no GF alternatives on the cafe menu. If we went to a restaurant, we phoned ahead.
“Can you tell me if there’s any wheat in the gravy, my mother is a coeliac,” my mother would say.
The chef would be left scratching his head. “Your mother is a what?”
My grandmother was unwell most of her adult life and her coeliac diagnosis followed a long battle with bowel cancer. A lifetime of eating gluten – wheat, barley, oats, rye and malt – wreaked havoc on her small intestine and blocked the nutrients her body needed. It weakened her teeth and bones, and prematurely shrank her already petite frame.
Even as a young girl, I knew how frail my grandmother was. She was thin and hunched, with translucent skin waxy to the touch. She was completely bald, or rather, she was bald with sparse strands of steely hair that sprang up all over her scalp – a consequence of her cancer.
She owned an eclectic collection of silk scarfs and turbans in peacock green or leopard print, which she always wore in company. Even walking to and from the car, she wore her wide-brimmed pink straw hat. It was not vanity. I never once heard her complain, but “decorum matters, dear,” she would say, patting my hand.
Inside, she sat in her favourite chair, happy and bald as a baby. I loved her wax-paper skin and her perfect domed head. It never occurred to me that she was anything other than beautiful. She and I loved each other fiercely.
Having a coeliac in the family impacts every meal, every celebration.
Sweet treats were the hardest and my grandmother made milk puddings to compensate. Tapioca (which we called frog eggs), baked custard (made with cornflour) and Spanish cream, an old English version of panna cotta. As children, we nearly bowled her over as we rushed to the fridge to see what was on offer for dessert.
For special occasions, our family did an impressive line of modified treats. Coconut macaroons, pavlova, and ice-cream birthday cakes. My mother developed an ice-cream plum pudding with brandy-soaked fruit that she made every year at Christmas.
Bread was another matter.
Every month, my grandfather ordered a box of gluten-free bread mix, which arrived in the mail from the Coeliac Society. Every week, he baked a fresh loaf of pale, crumbly bread. Why he baked it and not her, I don’t know. Long-married couples have their funny ways, negotiated once then unquestioned for decades. I can still remember the taste of that bread. It had the consistency of sour cream cake and it fell to pieces as you picked it up. You had to chase the crumbs around your plate with a spoon.
My grandmother was in her late 70s when her body gave in. It was devastating to watch her physical decline – the beautiful mind trapped in the ailing physical form. I was 16 when she died. I cried every night for months.
In the years after she died, the gluten-free fad got going.
Autoimmune disease runs in families. Fast-forward 20 years, and I had my own children. Two at once in fact, identical twin boys. I held my breath and waited.
When my children were eight, one of my sons developed chronic diarrhoea. It wasn’t until we ordered pizza one night and he began staggering around doubled over in pain that the penny dropped.
“Does the pizza make your tummy sore?” I asked, kneeling in front of him.
“I never want to eat pizza again,” he said.
What my grandmother could and couldn’t eat was the preoccupation of my childhood. Now, as a mother, I’m experiencing a sort of backwards deja vu.
Remarkably, my son’s wheat flour intolerance (he’s not coeliac fortunately, yet) does not feel like a burden. Rather, I find pleasure in planning and preparing meals we can all eat, like gluten-free tortillas made with corn flour and homemade sourdough bread made with spelt. (Spelt, while not GF, can sometimes be a wonderful alternative for those with wheat flour intolerance, but should be avoided by coeliacs.) I feel like my grandmother is here with me again. I imagine sharing my gluten-free cake recipes with her and watching the glee on her face as I show her the gluten-free supermarket aisle.
In particular, I’m remembering the love, courage and commitment that my grandparents showed each other in navigating her disease. When I buy my son spelt bread off the shelf, I think of my devoted grandfather, trussed up in his wife’s apron, pulling his bread tin out of the oven. When I order my son eggs on gluten-free toast and the waitress says, “Coeliac?”, I think of those 1980s chefs and smile at my grandmother’s forbearance.
My son has inherited my grandmother’s stoicism.
Only the thought of never eating pork buns again kills him. Recently I made the three-hour round trip to a bakery in Sydney’s Balmain that sells only vegan and gluten-free treats. I spent $30 on four GF doughnuts. When I got home, my son did a little dance.
“They’re nearly as good as Krispy Kreme!” he said.
Strangely enough, my son’s identical twin brother has no symptoms. Research shows that if one identical twin has coeliac disease there is a 70% chance of the other twin having it too. And what of the other 30%? We have a lot to learn about epigenetics and the not-so-perfect DNA match of identical twins.
It’s curious what remains of us when we die. It’s now nearly 30 years since I lost my grandmother and my grandfather is also long dead. My love for my son is different to what I felt for her but it’s no less fierce, and, as with her, made stronger for his imperfections.
Pieces of her in him, and still here with me today, all these years later.
Erin O’Dwyer is a journalist and lawyer
• The headline and text of this article were amended on 9, 10 and 11 January 2023 to add clarification regarding spelt, a type of wheat, which is not gluten free and not suitable for coeliacs.
