Jamie’s Celiac disease diagnosis first came about Easter of this year. We hadn’t noticed any symptoms of celiac disease (not that we would have known what to look for – I don’t think we had ever heard of it!) but he suddenly seemed to be getting a lot of tummyaches. At first we didn’t take too much notice, which sounds awful, but kids do get tummy aches! But within weeks he seemed to be waking up with tummy ache every morning and often getting them in the afternoon as well. He also seemed to be quite lethargic and tired a lot of the time, and his appetite was really up and down.
He also seemed to be getting incredibly skinny. He has a ‘skinny build’ anyway, but he was growing up without growing out any. Classic symptoms of celiac disease include diahorrea and pale stools: nine year old boys (for all the toilet humour) don’t usually talk about that sort of stuff, but when questoned he ‘thought’ that might be happening. We went to see our doctor and he was brilliant, immediately suggesting celiac disease and sending him for a blood test. (This is the first stage in celiac disease diagnosis, as it shows if the antibodies which react to gluten in the system are raised. It doesn’t give a definite diagnosis, but shows a likelihood.)
I have to say that for Jamie, that blood test was the worst part of his celiac disease diagnosis. He tends to worry about things, and he started as soon as the doctor mentioned blood tests. We were booked into the local children’s hospital for the next day (giving him as little time as possible to worry – but he got a lot of worry into those 24hours!).
It was pretty bad. Hospitals in the UK (and I’m sure in other countries) have a cream which they can put on the child’s skin to numb them before they take blood. For some reason they didn’t do that for Jamie, but stuck a book in front of him to read and put the needle in his arm. It took them almost ten minutes of digging around in his arm to find that vein, during which time tears were rolling down his face as he tried his hardest to ‘be brave’ as they told him. By the end of it I was nearly screaming on his behalf. The other problem was that everyone had told him (including the doctor and the hospital staff) that it ‘wouldn’t hurt’, it was ‘only a scratch’ and he wouldn’t feel a thing’.
Well it did hurt, it was more than a scratch and it hurt a lot!
Lesson learnt by child: don’t believe a word they tell you.
Three weeks later the results came back showing a “strong possibility of celiacs disease”
