Yes, it’s Coeliac Awareness Week here in the UK again, and local groups are organising events to promote awareness of this disease. The focus this year is on getting diagnosed.
Here in the UK, it’s estimated that as many as 1 in 100 people have the disease, and many – indeed, most – of these are undiagnosed.
According to Coeliac UK, it can take as long as 10 years from someone first presenting themselves at their doctor’s surgery with symptoms for them to get a diagnosis.
Luckily, it didn’t take us that long to get my daughter diagnosed – after all, that’s almost her entire lifetime! We first became aware that something wasn’t right at Christmas 1996, when she was just 1, and I took her to the doctor several times in the early part of 1997. Her symptoms worsened:
- she lacked energy – she and I would sit on the floor at Tumbletots, me with my big pregnant belly, and her with her big swollen malnourished belly, and weep while the other toddlers played around us
- she vomited at every meal – not a classic symptom, and one that the medics thought was irrelevant. But its not normal, is it?
- she ate less and less, until she was eating only milk, grapes and chorizo (odd, I know – but naturally gluten free!)
- her belly swelled until her belly-button everted (became an outie, not an innie)
- her arms, legs and buttocks grew skinny
At one point she was wearing the same size nappy as her 3 month old sister – at 21 months old – because the age-appropriate ones were too big for her […]