This week I was wading through my weighty file of health-related papers when I stumbled across a medical mystery.
I had been searching for vaccination documents for my new hospital job when I found a surprising gastroenterology letter from 2010. It stated blood tests showed I did NOT have coeliac disease. For some reason this information is not on file at my GP’s – maybe due to me moving house or miscommunication from hospital to GP.
I definitely DO have coeliac disease. My symptoms persisted and I went back for more tests and was diagnosed in 2012. But how many other people are in the same boat – given false-negative results and are unknowingly living with coeliac disease?
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I find it all very strange – at the time of the letter I had been eating absolutely loads of gluten as I had just done the London Marathon. I was snacking on cereal bars and eating more carbs (which nearly always had gluten in). This is obviously what prompted me to look into my stomach symptoms, as they had worsened considerably. I felt like an Oompa Loompa in my running gear due to the bloating and was having terrible pain and very embarrassing toilet situations.
But why, then, was the test negative? My understanding is that it is usually very sensitive if gluten is in your system.
This discovery has made me think some more about my tiny tot Amalie, who seems to be reacting to gluten but tested negative for coeliac disease. What should I do if she is tested again and it is negative? Do I trust the results?
It has also made me feel differently about people who just “feel better” when they’re gluten free. If you still feel in your gut it might be coeliac disease, maybe it’s worth thinking about another test.
By Karen Woodford – non-coeliac turned coeliac