–An update to mark both Coeliac Awareness Week 2015 and my first year of being coeliac–
Bone density. Two years ago I had a bone density scan. My GP suggested it in conjunction with other unrelated investigations. She thought it would be wise, in view of my low iron, low every-bloody-thing… all attributed to breast-feeding. The scan showed osteopaenia (the precursor to osteoporosis). So that sucked. What sucked even more was that it wasn’t for another YEAR that I was diagnosed with Coeliac disease – losing me 12 months of potential improvement. Because in that year I kept eating gluten and thus not absorbing any calcium, vitamin D, iron, etc… Frustrating.
Now that we are living back in the same area we were when Small Z was born, I am closer to the GP I found at that time. She’s a super-straightforward lady – and usually that is something I love about her, but today – not so much. I was already feeling a bit down, because I knew that she wouldn’t have called me in unless my recent bone density scans sucked.
“No!” she said, when I turned up – having scavenged a cancelled appointment – dragging two scruffy Smalls with me. “Actually there has been a little improvement – mostly in the spine – not so much in the hip.”
I explained that I’d only really had a year to work on it, and she asked me about my diet. I told her I’d gone off dairy on January 1st for a month in an effort to find out why I STILL felt crap after the November Glutening Disaster. I had discovered that quinoa and coffee were the problem…eventually.
She looked at me hard. “I need to make it very clear to you. You do not stick to your diet, you don’t make eating properly your priority, you will DIE EARLY. That is an actual statistic. You can’t do things like cut out dairy.”
I nodded mutely, and felt Small Z start to shake beside me. I found my voice.
“We are all coeliac.”
“All three of us here – we’re all coeliac. So could you please explain to Zoe exactly what you just said? Because she’s really upset.”
She looked a little contrite and pulled her chair around so she was right in front of Small Z. She talked right to her.
“What I’m saying is true. If people with coeliac disease eat gluten, they will die earlier than those who stick to their proper diet. Is your house gluten free?”
We all nodded.
“Do you ever ‘cheat’ and eat gluten?”
Much head shaking.
“Well, because you and your sister have been diagnosed so early and you stick to your diet, your life expectancy will be just the same as anyone else who doesn’t have coeliac disease.”
Small Z wiped her tears and her nose and I felt so angry about this stupid thing that my genes passed on to her. I felt angry that the doctor had been an insensitive twat. But I was also glad she laid it out there. She went on to tell me that the crucial time for kids with coeliac disease is in their teenage years and early twenties, when they feel bulletproof and don’t want any restrictions.
I understand that. And I will understand if the Smalls feel that way – but not about their diet. Because then, as well as feeling immortal, they will have to also be incredibly stupid. I fondly hope that with all the knowledge available to them, and almost their whole life being gluten free, they will smoke a few ciggies, try a few drugs and remain gluten bloody free. Best case scenario – a vaccine will have been developed by then, and we won’t have to be vigilant anymore.
If you have a first degree relative with coeliac disease, you need to be tested for it too.