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Tuesday 2 August 2011

Land of Frustration.

So, after a 13 hour, (thirteen - count them - hours, on my own, on a ferry, with three boys under 6) boat journey, and then a two hour drive from Portsmouth to Gloucestershire, we arrived at our UK house at 8.40 am today.

I had time to release the boys to run madly round the garden for 40 minutes and a freshen up before heading to the GP for Ben's appointment.
And I'm frustrated by it. I was hoping that the GP would run blood tests - these give a pretty good indication of coeliac disease - but he thinks it's pointless, that the blood test would not be diagnostic in a child and that a colonoscopy would be required, which no one would want to do on a tiny two year old.
He's referring us to a paediatrician who will, from the sounds of it,  diagnose Ben as coeliac simply on the basis of what I told the GP today and his weight and height.
It sounds like it will be a "tick box" exercise.
Ultimately the GP is telling me to put Ben back on gluten for a week or two and keep a diary of both his intake and (TMI, sorry!) output. And then to remove gluten and maintain the diary. And if he's better without the gluten, the we conclude it's the gluten. I'm frustrated by this because, well, I didn't need a doctor to tell me this, I didn't need to waste his time and I certainly don't need to take the time of a paediatrician if that's all that they're going to tell me.  
I'm not complaining that this might be the advice they give, it just seems ridiculous that I need to waste their time to hear it.
And everyone I spoke to in the last few days who knows about these things, medics, dieticians, science writers and communicators, coeliac sufferers, everyone, told me not to do this, not to just cut such a massive food group from his diet without a proper diagnosis.
J however feels this is helpful, that it has given us permission to do what we thought made sense in the first place. He's less frustrated than me, clearly.
I think I wanted the test because there was a chance it would have been negative, that it would have said there was nothing wrong with him, that I could have change the theme of this blog because there'd have been no need to raise a gluten free child. But basically we're being told that if we think it's the gluten, after the month or so of diary keeping it probably is, and in my heart of hearts I already know the answer to that.

We saw friends later and spent a lovely day in the garden with them, having my friends' daughters in the mix hammers home how small Ben is though, they're both as tall as him, one is taller, and they are 11 and 13 months younger.

Food wise he had, (because the food diary might as well be here):
 Breakfast - rice crispies with milk. Baked Beans and the white of a fried egg.
 Snack - a few Hula hoops
Lunch - Frankfurters and a fruit ice lolly
Supper - Pasta with a buttery sauce, some cold cooked sausages a slice of Garlic bread and strawberries,
Before bed - some malt loaf with butter.

Output - 2 awful nappies.
    

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