Gluten Free Child

Gluten free (without me)

For the first time today, my coeliac daughter has to choose and buy her lunch without adult help.

smallcafeteria.jpgShe is 11, and will be going to secondary school in September. Her future school has invited all those joining them in September to come in for two days to experience life in a big school and meet their future classmates and their teachers.

Just so everyone knows: here in the UK, in the state-provided system (most) children go to primary school until they are 11, then secondary school from 11-16 (or 18, if they decide to stay on for further education). Primary schools tend to be small – ours is less than 200 children aged 3-11; secondary schools are bigger – hers will be about 1,100 children aged 11-18.

Schools haven’t broken up for the summer holidays yet, though exam season is finished, so Big School will be full of children, almost all of whom will be much bigger than she is, and will be buzzing.

She has been taking packed lunches to school all her life, though she did once have a Christmas Dinner. She would really like to be able to eat with her friends, so she’s gone off clutching her dinner-money to have a school dinner like all the others.

This is, of course, exactly the right time to try it out – lots of other children will be new, and frightened, and not know what to do or how to do it, and the staff will know this and make allowances. She has been away from home lots of times now, on guide camps and school residentials, but we’ve always planned the meals in advance, and she’s not had to choose, order and eat it without guidance as to what is or isn’t likely to be gluten free.

So this is quite a big step for her – and for me.

Fingers crossed.

105% mistake

The worst holiday I ever had was a week in Tenerife about 10 years ago.

We’d booked an apartment by the beach, and taken our 14-month-old daughter. Sounds good, yes?

No. She woke up early, she wouldn’t go to sleep, she woke up screaming in the night. She’d always been colicky and a bad sleeper, and we just thought it was more of the same … we did everything we could to keep her quiet in this apartment block with paper-thin walls, from reading stories at 2am, to dressing dollies at 4.30am. Plus, of course, we had the nightmare nappies to deal with, endlessly. We took it in turns, but oh dear, were we tired.

Our lowest moment was walking up and down the unlit road outside the block in the pitch black – when all the party people who were actually enjoying their holiday had gone to bed – desperately trying to feed her Weetabix, with the idea that perhaps she was hungry.

Yes – there’s the mistake. Weetabix.

Don’t get me wrong – Weetabix are great, they mash down beautifully for weaning, they absorb lots of lovely calcium-rich milk, and 2 out of my 3 children love them. But they contain 105% wheat. Yes, you read that right. According to the Weetabix site, they are made with 105g of wheat per 100g of finished product.

So we were unwittingly the cause of this disastrous holiday – unwitting, because she was not yet diagnosed as coeliac, and needing a diet that is 100% free from wheat (and barley, and rye). So I don’t feel guilty, except about the loss of sleep caused to our holiday neighbours.

If that was you, I’m sorry. I won’t do it again.

I’ve entered this post into Babylune’s writing contest about making parenting mistakes – follow the link to enter one of your own.

Invisible risks of living gluten free for children

I don’t mean to worry you – and I’m not going to worry about this myself – but I think it is better to know these things in advance.

People diagnosed with celiac disease as children are more likely to die younger.

A long-term study by doctors at the University of Nottingham (read it at Medscape – I found it at celiac-disease.org) indicates that children diagnosed with celiac disease have a threefold increased risk of longterm mortality, in contrast with adults diagnosed with the disease, where the long-term increase of mortality is small.

Obviously everybody’s individual risk of mortality is 100% – we are all going to die sometime. What the study shows is that these children are more likely to die early.

The study identified celiacs in 1979, and tracked them until death or the end of 2004 (a few were lost to the study due to emigration or other movement), and the causes of any deaths in that time were analysed.

You will know that some of us are expected to die each year from a variety of causes – insurance companies study this very carefully to manage their risks, and make money by getting this right.

The study found that the rate of death was higher than expected for everyone in the study group – just a bit higher for the adults, but significantly higher for the children.

The doctors found that the “excess mortality” – extra deaths – for those people diagnosed as adults was mostly due to gastrointestinal cancers or lymphomas. For those diagnosed as children the extra deaths were due to accident, suicide and violence – as well as malignancies. They also found that the extra deaths from lymphomas increased after 25 years – and increased more for the children than for the adults.

Now, these are extra deaths – obviously some children are lost to death by accident, suicide and violence every year anyway – but celiac children are more likely to die in this way.

So what on earth is causing these children to die early?

There are a few suggestions based on other studies:

  • children with chronic diseases are more likely to be risk takers than healthy children
  • untreated celiac disease is associated with psychiatric problems; perhaps these children are not adhering strictly to the diet
  • some people – a very few – do not respond to dietary treatment; these people are more likely to be at risk of malignancies and depression
  • adults established on a gluten free diet tend to have a poorer quality of life than the general population or other people with chronic diseases

Overall, the doctors think this increased risk may reflect behavioural changes associated with coping with chronic disease and its treatment.

There is some good news: this study, like other studies, found that there is a reduced risk of breast cancer in women with celiac disease.

However, the increased risk to our celiac children of death from accident, suicide and violence is – as the doctors say – a cause for concern.

What can we do to help our children?

  1. don’t panic. While this study seems valid, thorough and important, we don’t know all the factors affecting the children in this study, and this group of people were identified in 1979 – things have changed, in that there is a wider range of foods available and more understanding of the disease in the wider community, making it easier to live gluten free these days.
  2. keep them gluten free – don’t let them increase their risk of malignancies, depression by cheating on the diet. It is important that celiac children should live gluten free, and avoid all the known dangers of undiagnosed or untreated celiac disease.
  3. keep a watchful eye on their risk-taking tendencies – but you’d be doing that anyway, wouldn’t you? Not a worry in this house, where my coeliac is very risk-averse, and isn’t at all likely to take up base-jumping.
  4. and give them every opportunity to develop independence, so that they can assess the level of risk for themselves in the future.

Gluten Free at Centerparcs

I’ve now reclaimed my three very tired children from their weekend away with my parents – they’ve been to Centerparcs in the Lake District, and are quite worn out with excitement and activities.

I’ve never been to Centerparcs, though have heard good things of it, and so am relying on the feedback from my mother and my daughter …

Centerparcs is a complex of lodges/apartments, with a variety of restaurants/cafes and a supermarket, so my family self-catered. But they did eat out one night – Italian – and found that the restaurant had its own stock of gluten free pasta, so our coeliac had a pasta dish and icecream. Apparently there was also a good stock of gluten free products in the on-site supermarket too, for the self-caterers.

Rumour has it that it is possible to have a gluten free (and dairy free, if necessary) pancake at the Pancake House at Centerparcs, too – though I am rather amazed by this, and would like to see it myself before recommending it! According to the messageboard, Centerparcs restaurant staff now have a list of what is/isn’t OK to eat, and even the chicken nuggets are gluten free (if you like that sort of thing).

It sounds like a great place to take children to, though more than a bit expensive. Still, the children loved it, and haven’t stopped discussing the swimming, the cycling, the water-slides, the kayaking, the zip-line, the pottery-painting, the fencing, the owls, the …

No wonder they’re tired.

Coeliac Youth of Europe

Do you need some information about travelling gluten free in Europe? I found the Coeliac Youth of Europe site, cye.gifwhich although intended for young people (under 30), contains information that might be useful to all. You can find links to coeliac societies from many countries – not just European ones – and information about eating gluten free in different countries.

It’s too late to register for their summer camp this year, but it looks like they run a camp each year in a different country – this year it will be in Sweden. There are pictures of previous camps, in several different countries – looks like fun, and a good way to see something of a country without worries about finding gluten free food. The camps are for over 18s – but it might be something to think about in a few years, when our coeliac daughter is a bit bigger.

I wonder where they’re going next year?