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Wednesday 3 August 2011

Bit late tonight

It's 2 am and I'm not ready to sleep and since I haven't recorded todays food etc this seemed a logical place to come.
I've had chance to have a think about yesterday and the GP appointment.
And the more I refect, the more I wonder if the GP is just a bit out of date...
When I was diagnosed three years ago I had a blood test which showed a strong likelihood and then this was followed up with a colonoscopy which confirmed it.
Coincidentally, at the same time my GP ordered my tests because I was always anaemic and had pernicious anaemia my mum, across the country, had been to her GP because of gastric issues.
He too ordered a blood test, which showed a strong possibility. My mum then cut gluten from her diet, despite me telling her not to, so when she had the biopsy/ colonoscopy it was inconclusive. Her GP though was happy to accept that it was probably a coeliac issue, and felt that the blood test was diagnostic.
Friend have sent me peer reviewed research which suggests that this makes sense.
Since then, many authorities have started to accept the blood test as diagnostic - this is important because you then get food on prescription - which, as he's a child, would be free (only it wouldn't because we don't live all year in the UK).

So in retrospect, I'm wondering if what the GP was actually saying was that there's no benefit to doing the blood test as no one will want to do the colonoscopy on such a small boy, and you'd need the colonoscopy to get the free prescriptions.


With that thought in mind, I guess it makes sense not to bother distressing him with a blood test, except that's not the point. I want to know if it's coeliac because there's a chance there's a calcium issue, a chance it's the reason he's so small, a reason his teeth are so bad, and he might need more than just "keep off the gluten".


Anyway, lovely day today - poor food though.


Breakfast - toast and jam
Lunch - chicken and chips and a fruit winder - he ate little
Afternoon snack - pom bears and a cornetto - he ate about 1/3rd, none of the cone bit
Supper - It was so hot and muggy he barely ate, a few potatoes, a bit of salad and a doughnut


One really bad nappy at breakfast time.

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.
    

Monday 1 August 2011

Scarecrows and Swimming

We had a lovely day yesterday.
Church over we took the boys to the park to run off some energy and brought them home to rack of lamb, parmentier potatoes and vegetables. They played in the garden while we put a Pork Leg joint - absolute bargain, free range and reduced to £3 just before Waitrose closed for Saturday night and all day Sunday - into the oven to slow roast for the afternoon.
J watched some cricket and we headed out the the Scarecrow Festival at Torteval. 60+ scarecrows arranged in various tableaux. And all the fun of the fayre. The boys bounced on bouncy castles and chased round looking at the scarecrows.
We came home and ate the pork, with apple sauce and bread - for those of us that aren't Ben.
Food is so much easier when it's not a compromise, when I'm cooking things that don't require a gluten substitute - I'm rapidly coming to the conclusion that there isn't one.
We changed and headed out to the beach and this time really did swim. I was amazed by the clarity of the water, in up to neck and yet able to see grains of sand on the sea bed.
A really lovely evening, I don't think I'll ever want to leave here.

That said, I'm off today to England for a week or so. 13 hour boat crossing tonight. Just me and the boys, J has meetings and can't follow us until Thursday - which gives me chance to plan his birthday ;0)