Gluten Free Child

Microbe Magic

Do you need to explain the digestive system to your coeliac child?

A new site for primary school age children
(4-11) has been launched by the Alimentary Pharmabiotic Centre (APC), which is a scientific research centre, based at University College, Cork.

Its about microbes, not specifically about the digestive system, though it does talk about it and in about the right level of detail, I think, for children. It talks about the importance of the villi, though not about coeliac disease.

If you wanted to explain about the way your body digests food (from top to bottom, as it were) this site will help!

It also covers other aspects of the body, and healthy living, with games and quizzes.

Microbe Magic

Gluten free Casein free gingerbread nativity scene

I don’t know if you’ve been over to Only Sometimes Clever to admire her GFCF gingerbread house – if not, you should.

We used her recipe for GFCF gingerbread dough to make a nativity scene, using cutters available here (thanks Karen for sharing a US link – mine came from somewhere like Tridias or Great Little Trading Company years ago – they don’t sell them now).

Well, when I say ‘we’, what I mean is that my 12-year-old coeliac made the dough and then cut out and baked the shapes. She and my other two (both younger than her) then ‘decorated’ the shapes and stuck them together. Completely unsupervised. In fact, they had a sign on the kitchen door that said ‘no entry until 4pm’.

This is what they were doing:

GFCF NativityGFCF Nativity

It isn’t how I’d have done it, but I don’t think that matters. I’m delighted with this colourful nativity scene – and it smells wonderful.

Have you spotted the green cow, the yellow camels and the sheep out behind the stable? There’s a donkey in there too, somewhere …

Four bears for celiac disease

Gluten Free BearI know I have a bear available for coeliac disease (over in the righthand column – his t-shirt says ‘Please look after me – I have a special tummy too’), but here is another fab idea:

The Westchester County Celiac Sprue Support Group will send one of its three Gluten-Free Traveling Bears (called Buckwheat, Quinoa, and Teff) to spend three days with your gluten free child anywhere in America. Each bear comes with its own bag, a disposable camera and games to play, as well as information about living gluten free, and some recipes using that bear’s grain).

While the bear is staying with you, he expects to go with your gluten free child to school, parties, Brownies – wherever your child is going. You could plan special presentations to explain the gluten free diet during the bear’s visit – or just let the bear help the child explain his or her special tummy.

There is a website where children can see maps that track the bears’ travels, pictures of places the bears have been, and letters from children the bears have visited. The Westchester Support Group asks for a $25 donation for the bear’s visit. As far as I can see, though, only Buckwheat has done much travelling so far!

This is a wonderful idea. Each of my children has been responsible for a bear (one year it was Stuart Little, so a mouse rather than a bear) that has come home from school for a weekend (when they were in Reception, i.e. aged 4 or 5), and we’ve taken pictures of the bear enjoying family life with us, and written about his stay in the bear book, which went back to school with him. They have loved it, so I can see how popular this scheme would be. And it is such a good idea to let these bears broach the subject of living gluten free, because this can be difficult for some children to mention.

Thanks to Nancy for alerting me to this … definitely an idea worth spreading.

Mother really does know best about gluten free living

There’s a very interesting thread on the messageboard today, about what our children are being taught in school about gluten and coeliac disease.
A mother has written a post saying (about her teenage son): “In his GCSE food tech lesson,his text book states flour is safe as gluten is only formed when it gets hydrated. His teacher is now telling him and the rest of his class he should be able to eat wheat flour crumbles, biscuits etc. And can work with wheat flour and breathe it in. i’ve spent years teaching him and this book and his teacher has put doubt in his mind”. (Note for those not in the UK: GCSEs are the exams young people take at 16).

This has – naturally – caused shock and consternation, and has led people to identify a whole range of misinformation being provided by schools, such as … one school’s revision guide which implies that just as if you don’t have enough iron, you get anaemic, if you don’t have enough gluten, you get coeliac disease. So very wrong! Another: an examination board appears to believe that adding fat to flour “coats flour grains to stop gluten forming when water is added, to make sure that the pastry has a short crumbly texture”

For the most part, this isn’t the fault of the school, as textbooks tend to be taken as truth – but as we all know, nothing and no-one is infallible. Unfortunately, once something is published, it tends to replicate across other publications.

The really shocking thing about this is that the teacher won’t believe that the text book can be wrong, won’t let the child take the book home so that the parent can check the information, and was scornful of the idea that the mother could correct the examination board.

The advice of the messageboard today was that the mother should contact: the school governors, Sarah Sleet (CEO of Coeliac UK), the examination boards and the publisher of the offending textbooks.

What would you do?

What does she need? Where to start …

I’m feeling a bit demoralised today. 10 years in, and we’re still having to explain at every step …

My coeliac daughter – who has been on many residentials, with her primary school, with both Brownies and Guides, and also for week-long residential holidays, has just gone up to secondary school. As part of their induction, the Year 7 classes (180 children) are going off for a 3-day team-building session.

canoeI think that’s a wonderful thing, and she’s looking forward to it. I have no worries at all about the residential itself. She’s not going to be homesick, she’s going to enjoy the activities, she’s going to make friends. But I am worried about the food.

Usually when I send my daughter on these events, I send a pack of gluten free staples as needed – bread, perhaps pasta, some cake etc. So I asked the school to find out what I should send.

The centre the children are going to is a dedicated centre for activity sessions for schools, and advertises itself as able to cope with special diets. However – on being notified that my daughter is a coeliac, the centre says “tell us what she needs, and we’ll get it”.

Well, that’s a kind offer, but is it me, or is this just not reassuring? What are their menus? How will I know what she needs to match what they’re providing? If they don’t know what she needs, how will they understand about the cross-contamination issues? What if I provide a list, but they’re offering something I haven’t thought of, and assume it’s OK for her to eat because it’s not on the list?

Suppose they only do one of these 3-day courses each week – that is 180 children for us, but they cater for up to 300. Statistics says that here in the UK at least one and maybe three of those children each week will need a gluten free diet. Surely, surely, they’ve met this before …

The answer to that question “what does she need?” ranges from the very brief, easy answer, to the extensive, list-everything-and-explain-what-she-can/can’t-eat.

1. She needs a gluten free diet.

OK – that is too brief. Virtually nobody in the ‘normal’ world understands the extent to which gluten infiltrates the diet.

2. She needs a diet free from wheat, barley and rye – and contaminated oats.

Better – but still not clear enough, as you can’t be sure that people will understand that ‘flour’ comes from wheat, and that this will include rusk, and breadcrumbs and pastry and pasta and cake and … And that is before you get into questions about gravy, custard, soft drinks etc.

Somebody was looking for help on the gluten free diet this week, and found my site with the question “is there gluten in toast?” Well, yes there is – unless you make the toast with gluten free bread. And even then, you have to make it in a way that doesn’t get ordinary breadcrumbs mixed up with it in the cooking. So you see, you can’t assume people will understand …

3. So do we spell it out?

She needs breakfast – so, maybe special breakfast cereal, bread, yoghurt, sausages, baked beans … what are you offering the others for breakfast?

She needs snacks – so, special biscuits or cake perhaps – or at least fruit.

She needs a midday meal and an evening meal, and maybe a supper – so what are the others having? If it’s packed lunches, she’ll need special bread, crisps, biscuits …. If it’s a cooked meal, she’ll need … well, you get the idea. Every meal needs to be thought through and alternatives identified.

What does she need? isn’t really an appropriate question. Particularly if I’ve already given them answers 1 and 2, and explained the need for 3.

I feel dispirited.