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And the more I refect, the more I wonder if the GP is just a bit out of date...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.
Wednesday, 3 August 2011
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.
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)
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)
Saturday, 30 July 2011
Counting my Blessings
Thank you, all of you for being so lovely yesterday. I had scores of messages all supportive, all telling me off, in a gentle way, for blaming myself.
I had a lie in this morning, J dealt with the boys until 9.30when I got up, and the world seems a much brighter place.
The sun is shining, the boys are laughing and I am surrounded by love.
What's more, there is something I can do, I can pray. I'm a Christian, for those that don't know, and I believe in the power of prayer. With prayer and dental treatment, and preventative measures by the hundred, I believe we can have his mouth healthy again and that we can keep it that way.
I have friends who have so much more to deal with than a few rotten teeth.
Friends who have lost babies late in pregnancy, or to stillbirths, or soon after they were born - there are 17 babies every day in Britain alone, who are either stillborn, or who live only a few short hours, Seventeen a day. Every day. Can you imagine?
I have one friend who lost her little son a couple of months ago, one morning, while they were on holiday, he just didn't wake up. And yet she and her husband and daughter carry on because they have no choice, and she is still able to count her blessings. (L, xxx if you are reading this).
So I'm counting mine. I have three bright beautiful boys, I have so much love and laughter from them and their daddy, I know that the boys and I are his world.
My wider family are lovely.
And I have you dear friends, people I've known for years, and know well, people I know a little and hope to learn more about and total strangers who happened upon the blog and took time to message me.
I have so much to be thankful for,.
xxx
I had a lie in this morning, J dealt with the boys until 9.30when I got up, and the world seems a much brighter place.
The sun is shining, the boys are laughing and I am surrounded by love.
What's more, there is something I can do, I can pray. I'm a Christian, for those that don't know, and I believe in the power of prayer. With prayer and dental treatment, and preventative measures by the hundred, I believe we can have his mouth healthy again and that we can keep it that way.
I have friends who have so much more to deal with than a few rotten teeth.
Friends who have lost babies late in pregnancy, or to stillbirths, or soon after they were born - there are 17 babies every day in Britain alone, who are either stillborn, or who live only a few short hours, Seventeen a day. Every day. Can you imagine?
I have one friend who lost her little son a couple of months ago, one morning, while they were on holiday, he just didn't wake up. And yet she and her husband and daughter carry on because they have no choice, and she is still able to count her blessings. (L, xxx if you are reading this).
So I'm counting mine. I have three bright beautiful boys, I have so much love and laughter from them and their daddy, I know that the boys and I are his world.
My wider family are lovely.
And I have you dear friends, people I've known for years, and know well, people I know a little and hope to learn more about and total strangers who happened upon the blog and took time to message me.
I have so much to be thankful for,.
xxx
Friday, 29 July 2011
Horrible, horrible day...
Ben woke twice in the night crying that his tooth was hurting, he finished the course of antibiotics two days ago so I was concerned and called the dentist this morning.
They said they could give him an emergency appointment at 11.30am and I thanked them and hung up. I rang my friend to arrange for her to look after the older two and I then called the GP in the UK and arranged an appointment for next week when we're back home, I'm going to get him to blood test Ben, and we'll start to get some answers I hope.
I hung up on the receptionist and my phone rang again. The Dentist asking if I could come in with him straight away.
So off we trooped - all three boys and I - to the dentist.
We saw the senior dentist in charge of the practice and she called in the surgeon who happened to be there at the time, which was why they'd asked us to come in sooner rather than later.
I'm crying too much to write this now, so I'll be brief, his mouth is too small for them to be able to get the equipment in to fill his teeth, and the teeth are too far gone. How has this happened so quickly, it's not 4 months since they last painted them with some kind of sealant to slow the decay, they weren't like this then...
There are 4 that need to come out, two at the back and the 1st and 4th incisors. Possibly the 3rd too, if the surgeon can't fill it after all - or if it gets worse between now and the first date they can possibly do it - they've cancelled someone else to fit him in, on the 23rd August, in the mean time they've put antibiotic into the infected tooth and a filling on top to hold it.
I'm not sure I'll press Publish on this, I am so ashamed, my beautiful, smily, laughing baby. I asked what they thought was to blame, apparently it could be coeliac linked, could be because he had chicken pox at 12 months, could be because he was breast fed and fed to sleep until he was 25 months. My fault anyway, whichever it is.
They said they could give him an emergency appointment at 11.30am and I thanked them and hung up. I rang my friend to arrange for her to look after the older two and I then called the GP in the UK and arranged an appointment for next week when we're back home, I'm going to get him to blood test Ben, and we'll start to get some answers I hope.
I hung up on the receptionist and my phone rang again. The Dentist asking if I could come in with him straight away.
So off we trooped - all three boys and I - to the dentist.
We saw the senior dentist in charge of the practice and she called in the surgeon who happened to be there at the time, which was why they'd asked us to come in sooner rather than later.
I'm crying too much to write this now, so I'll be brief, his mouth is too small for them to be able to get the equipment in to fill his teeth, and the teeth are too far gone. How has this happened so quickly, it's not 4 months since they last painted them with some kind of sealant to slow the decay, they weren't like this then...
There are 4 that need to come out, two at the back and the 1st and 4th incisors. Possibly the 3rd too, if the surgeon can't fill it after all - or if it gets worse between now and the first date they can possibly do it - they've cancelled someone else to fit him in, on the 23rd August, in the mean time they've put antibiotic into the infected tooth and a filling on top to hold it.
I'm not sure I'll press Publish on this, I am so ashamed, my beautiful, smily, laughing baby. I asked what they thought was to blame, apparently it could be coeliac linked, could be because he had chicken pox at 12 months, could be because he was breast fed and fed to sleep until he was 25 months. My fault anyway, whichever it is.
Thursday, 28 July 2011
Not really a blog post
Just this link, which I'll read and take in when I'm more awake, with a less frazzled brain!
http://www.bbc.co.uk/blogs/food/2011/07/the-gluten-free-kitchen.shtml
Oh, and today was rice crispies (Waitrose own), boiled eggs and fish and chips - batter removed - on the beach, where we paddled so deep it was practically swimming.
http://www.bbc.co.uk/blogs/food/2011/07/the-gluten-free-kitchen.shtml
Oh, and today was rice crispies (Waitrose own), boiled eggs and fish and chips - batter removed - on the beach, where we paddled so deep it was practically swimming.
Wednesday, 27 July 2011
I told you I had the days confused...
I messed up yesterday.
I had a text conversation with a friend about inviting her son over to play, it went a bit like this:
Me: We were wondering when we could have J over for the afternoon.
Her: Any day this week but Friday, he'd love it.
[Me, thinking: Hmm, I can't do Wednesday, because S's friend L is coming at 11.30 to play, I might be away Thursday...]
Me: How about tomorrow?
Her: Brilliant will drop him off, around 12.45 and pick up at 6.
Me: Bring bathers we'll either go to the beach or turn the sprinklers on
Three hours later, I realise my mistake, it was Tuesday and tomorrow was (Today is) Wednesday!
So, that was me, and 5 boys under 6, for 6 hours, 2 meals and a promise of water play....
Oh and L is dairy intolerant, and J is fussy, and my eldest is fussy too, only differently. Back to the "If they make it themselves..." plan
We picnicked on hummus, GF pitta and salad, and had sorbet for pudding.
Then we made pizza dough, one batch my regular way (Bread flour, yeast, water and OO) and the other with a pack of "Isabel's GF pizza dough mix" which I'd found in Waitrose, you added an egg and water and mixed then kneaded, then rolled it out, it was then ready to bake.
Now this was obviously less exciting than kneading the dough, watching it rise, knocking it back and then throwing it around, so I didn't tell the boys about that batch, I made it up, shaped the bases (it made 4x 20cm diameter bases) froze two (the instructions say you can then cook them from frozen).and part baked the other two. Then called the boys in from their game of "Star Wars pets and owners" - probably best not to ask - and got them involved in making the yeasty version.
We left it to rise and headed out to the park, there's a free bouncy castle at the Park cafe so I bought them all an ice cream/ ice lolly - what a nightmare! What is gluten doing in ice cream? Why is there a need for wheat in what is basically frozen custard???
Anyway, disasters averted they bounced, played football and ran around for a couple of hours.
We came back, they changed into bathers and I threw then into the garden with the sprinklers on. Much screaming, of the good kind.
Once dry they knocked back and shaped the dough and I part baked them and switched Ben's. After I called them back they added their choice of toppings, ham, pineapple, mushrooms, olives, cheese, some "not cheese" stuff, sweetcorn. I baked them while they went back to the "Star Wars Pets" game.
Do you know, they ate every, last mouthful.
And for pudding I gave them apples and then, gloriously Free from everything (except pink food dye I suspect), Pink Panther biscuits - which my boys call "Pink Bepanthen" biscuits.
And by 7.15 we'd played about 7 games of hide and seek and the extras were collected - phew.
I had a text conversation with a friend about inviting her son over to play, it went a bit like this:
Me: We were wondering when we could have J over for the afternoon.
Her: Any day this week but Friday, he'd love it.
[Me, thinking: Hmm, I can't do Wednesday, because S's friend L is coming at 11.30 to play, I might be away Thursday...]
Me: How about tomorrow?
Her: Brilliant will drop him off, around 12.45 and pick up at 6.
Me: Bring bathers we'll either go to the beach or turn the sprinklers on
Three hours later, I realise my mistake, it was Tuesday and tomorrow was (Today is) Wednesday!
So, that was me, and 5 boys under 6, for 6 hours, 2 meals and a promise of water play....
Oh and L is dairy intolerant, and J is fussy, and my eldest is fussy too, only differently. Back to the "If they make it themselves..." plan
We picnicked on hummus, GF pitta and salad, and had sorbet for pudding.
Then we made pizza dough, one batch my regular way (Bread flour, yeast, water and OO) and the other with a pack of "Isabel's GF pizza dough mix" which I'd found in Waitrose, you added an egg and water and mixed then kneaded, then rolled it out, it was then ready to bake.
Now this was obviously less exciting than kneading the dough, watching it rise, knocking it back and then throwing it around, so I didn't tell the boys about that batch, I made it up, shaped the bases (it made 4x 20cm diameter bases) froze two (the instructions say you can then cook them from frozen).and part baked the other two. Then called the boys in from their game of "Star Wars pets and owners" - probably best not to ask - and got them involved in making the yeasty version.
We left it to rise and headed out to the park, there's a free bouncy castle at the Park cafe so I bought them all an ice cream/ ice lolly - what a nightmare! What is gluten doing in ice cream? Why is there a need for wheat in what is basically frozen custard???
Anyway, disasters averted they bounced, played football and ran around for a couple of hours.
We came back, they changed into bathers and I threw then into the garden with the sprinklers on. Much screaming, of the good kind.
Once dry they knocked back and shaped the dough and I part baked them and switched Ben's. After I called them back they added their choice of toppings, ham, pineapple, mushrooms, olives, cheese, some "not cheese" stuff, sweetcorn. I baked them while they went back to the "Star Wars Pets" game.
Do you know, they ate every, last mouthful.
And for pudding I gave them apples and then, gloriously Free from everything (except pink food dye I suspect), Pink Panther biscuits - which my boys call "Pink Bepanthen" biscuits.
And by 7.15 we'd played about 7 games of hide and seek and the extras were collected - phew.
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