In 2004, I did a 24-hour charity fast for the first time in my life, aged 25. In the following weeks, my appetite seemed smaller, and I then started losing weight and becoming very tired. I have always been slim, so I had no weight to lose, and I was eating the same amount & variety of foods. My GP thought I had anaemia, though my bloods came back OK. I continued to be very tired- I used to pause going up the stairs at work and remember crying in work one day because I just felt too physically tried to get out of the office and onto the wards (I’m a speech and language therapist in a large acute hospital). I had absolutely no intestinal symptoms or changes in bowel habit etc.
After a few months, my manager asked me to chat to one of the dietitians, who was the person to ask if there was a history of coeliac disease in the family. My mother’s sister was coeliac, and my mother was queried as a coeliac when I was very young, but it had never crossed my mind. Blood tests revealed increased antibodies, and my diagnosis was confirmed following endoscopy and biopsy by my wonderful gastroenterologist. There is something awkward about wandering around your own workplace in your pyjamas! My manager was very supportive,
and I took 4 weeks off work to recover my energy levels.
I’ve never looked back since. I thought I would miss foods, thinking ‘I’ll never be able to eat X ever again’, but I didn’t, though I do occasionally have a sniff of foods I can’t eat! The range of gluten free food available is so much wider now than when I was diagnosed, and I’ve also invested in several books and an online web course on GF baking, so I have pastry/pizza bases/various breads/scones/bagels/pittas sorted!
I’m also fortunate in that I can eat GF oats- I had my bloods done before trying them, and again after 3 months. I do have osteoporosis but am on Calcichew D3 and try to take plenty soya milk and (dairy) yoghurt.
I never think of myself as having a ‘disease’ given that I don’t need medication. The only time it is slightly awkward is when travelling- I make sure to bring food with me and will always research restaurants before going on holiday.
In retrospect, I think the lack of specific gastrointestinal symptoms was what made it take longer to reach a diagnosis- about 5-6 months.
