Are you sitting comfortably....then we'll begin! (Story-telling for Coeliac's.)

Don't you just love getting surprise parcels in the post! I was thrilled when I got home from work recently to find a package from my aunt, who lives in Australia.

Since Alexandra was diagnosed with Coeliac's, Grace has been very kind in sending over gluten-free goodies. (Top of Alex's list has been the Orgran Outback Animal Cookies (http://www.orgran.com/products/104/) which are the perfect size for kids.)
This time, the treat was a children's book, written by an Aussie author.

Great minds think alike!
Spookily, I had been on the look out for a similar children's book. When I picked Alex up from nursery recently one of her little buddies asked me why she couldn't have one of the sweets which were sitting in the basket for the kids to take home. I didn't have time to answer (the girl's mother was rushing away in a bit of a hurry), but it did make me think that it might be useful to explain to her friends about Alexandra's condition.  If other children her age are anything like her, they are full of questions, some of which are easier to answer than others. (What sound do bats make?....no Mummy, make the sound!, What does God look like? How do snails get their shells? Why do we need poo?- answers appropriate for a four year old on a post card please!)

What's the story?
With Alex starting school in September, she'll be meeting lots of new kids and it will be important that they understand that she can't have everything they can eat. I figured a children's book which explained what Coeliac's is, if it exists, could be helpful. Cue more internet research, only to find... very little! There were a few children's books about Coeliac's 'pending' on Amazon UK, and one or two books for older children on Amazon USA, but none looked like what I was looking for.

Ee-oh-sin-oh what?!
That's when Grace's parcel arrived. It contained a lovely book called 'Being Henry' by Mercedez Hinchcliff and illustrated by Peter Carnavas. It tells the story of a boy called Henry who has Eosinophilic oEsophagitis (what do you mean you've never heard of it!!). This condition means he is very limited in what he can eat, but he still likes to do lots of fun things with his friends. I was really impressed with the book. The language was simple and straight forward, but not patronising. It explained terms like 'endoscopy' and 'gastroenterologist' in way that certainly made sense to Alexandra. As we read it together for every question she had, the answer was on the next page.  (find the book on the Australian EoE website here: http://www.ausee.org/)
There was also some basic info for parents and carers, which was good.

'He's just like me.'

Perhaps the best thing about the book for me though was Alex's reaction to seeing in a book a child who also couldn't eat everything their friends ate ('and we're the same age mummy!!!' was shrieked in a high pitched voice on more than one occasion). There really needs to be something like this for children with Coeliac's (and many other illnesses and conditions in fairness, but one step at a time!!)

This is where my brain warps into overdrive and I start thinking about phone apps, cartoons, Dr Ranj talking about Coeliac's on Get Well Soon (a great CBeebies pre-school show for the un-initiated!!) ....  the possibilities are endless!

But back in the real world, does anyone know of any great books to help explain Coeliac's to kids?
(And now I'm off to email the BBC!)

Jen

The best medicine? Prescribing for Coeliac disease.

The NHS is an amazing British institution. Free healthcare, both primary and secondary, and very cheap or free prescriptions-what could be better than that! (Ok, I can think of a few things....but it's still pretty great.)

Food on prescription:
One of the things I didn't realise for quite a while after Alex was diagnosed with Coeliac's was that not only can you get medication on prescription on the NHS, you can also get FOOD on prescription. Seriously! Food that you can eat!! And it's not like finding greens hidden under your lovely mashed potato when you were a kid, there's no medicine hiding in the prescribable food, it's just standard gluten-free staples.
None of our health professionals highlighted that this was possible, it was only through reading some of the bumph that we got from the food companies suggesting that we request their product from our GP that it began to dawn on us that, yes, your GP can prescribe gluten-free products.

Do I? Don't I? Do I? Don't I?
This has given me a big dilemma. I find it strange that I can get a prescription for pasta, flour and pizza bases filled at the local chemist. I have felt uncomfortable in asking for a prescription for gluten-free food and in getting it filled, although it is something I have done a few times now.

This is my thought process (and I'm not saying my thoughts are right or wrong, or judging anyone for any decisions they have made in relation to this, I'm still not sure where I stand!!)

Reasons against me getting GF food on prescription:

• It's not medicine.
• It feels uncomfortable asking for the NHS to pay for food for my child that I would have to buy anyway.
• Surely there are greater priorities for healthcare budgets, when so many services are being cut?
• It's a bit of a pain going to the GP to get repeat prescriptions (yes, exceptionally lazy, I know), and I would feel stupid booking a GP appointment to change the prescription (I've only ever requested a prescription at the end of an appointment for a 'real' health issue.)

Reasons for me getting GF food on prescription:

• There is no medicine for Coeliac's, you have no choice but to eat gluten-free.
• Gluten-free food is stupidly expensive. (Fresh bread works out at about 30p a slice- and they're small slices! GF food is 3-4 times more expensive than 'normal' food.)
• If Alex didn't eat gluten-free food, she would cost the NHS a lot more money in terms of medical needs.
• Why look a gift-horse in the mouth?!

The technical bit:

The way the prescription works is that a person with a diagnosis of Coeliac's is allocated a certain number of units, based on their age and gender. They can then choose how to use these units on a mix of breads, crackers, pasta, flours, cereals etc. Once you have agreed the prescription with your doctor you bring it to your pharmacy, who will order the food in. You have should have a choice on which brands you get, which is why many of the gluten-free food companies offer free samples to newly diagnosed patients to win their business. (For more info, look here:http://www.coeliac.org.uk/gluten-free-diet-lifestyle/food-on-prescription)

I completely understand the importance of ensuring that everyone who is diagnosed with the illness has got access to food, and is not becoming unwell because they can't afford to eat gluten-free. On the other hand, food on prescription was introduced in the 1960's when gluten-free food was a lot less widely available, with few supermarkets stocking it and very little choice in the ones that did (so I hear- I'm not that old!!!).  On the other hand- 30p a slice!!

I have a repeat prescription for Alex that I get filled every now and then when the 'for' arguments are stronger in my head. Over the past few months there have been more calls in the media to change the way gluten-free products are prescribed, and NICE is due to review the guidelines for treating Coeliac's later in the year, so in the future, I may not have the option anyway. 

As I said, I am sitting so firmly on the fence with this one that I have splinters in my behind- I'd be interested to hear anyone else's thoughts about food on prescription. 

Jen

PS: I had no suitable photo for this post, so here's a completely gratuitous photo of my girlies!!

Oops I did it again. (or s##t I've given her gluten!)

Excuse number 1:  We'd just come in from a bank holiday day out. Everyone was hot, tired and tetchy.

Before

Excuse number 2: Someone hadn't put the plates away properly. I usually have different plates for the 2 girls but couldn't find any of Katya's plates so put the food out on two of Alexandra's plates.

Excuse number 3: The breads look the same when you're distracted. (err, well, they're both on the browny/ cream spectrum and they both have 4 sides.... not too dissimilar.....)

Excuse number 4: They were clamouring for food, they wanted it now. I had to be quick or someone might have keeled over from hunger!

Reality: There is no excuse. I was careless and didn't pay enough attention and my darling Alexandra paid the price. I feel so horrible if Alex eats gluten by mistake, multiply that by a hundred when it's actually my fault. (I can't think of any other time when I've been directly to blame for a gluten accident and I don't want to feel like this again!)

After

The result: After sitting down to a tea of ham and cheese sandwiches Alexandra said 'Mummy, I think you've given me the wrong bread'. 'Of course I haven't', I reassured her, then gave a double take and found Katya tucking in to Alex's gluten-free snack. Alex had eaten exactly 1/6th of a slice of Hovis Best of Both. She screeched in fright and then realised that she felt ok, so insisted on having a gluten-free sandwich as planned. Fast forward 4 hours, 2 sets of bed clothes, 3 changes of pyjamas,1 exhausted 4 year old and 1 very guilty Mummy.

I highlight mistakes I come across elsewhere and can't keep my own house in order. I guess you can never become complacent or take your eye off the ball- lesson (re)learnt!

Hartley's: gluten-free with heart!

Since starting this blog, I've had a few recommendations and suggestions for coeliac-friendly places to go and am always on the look out for somewhere new to try. One friend suggested we visit Hartley's Cafe in Hockley (one of the more alternative quarters of Nottingham City Centre) as it does gluten-free sandwiches and cakes. Well, I need very little persuading to try cake, and it didn't take much to convince my hubby to take me and the girls out for lunch.

Hartley's is a modern looking deli-style cafe in the centre of Hockley. It's not a huge place, and got very busy when we were there, which is hardly surprising as they advertise clearly that they cater for gluten-free (as well as dairy-free and vegan) diets. You can find out more about the cafe and see their menu on their website  here: http://www.hartleyscoffeeandsandwichbar.co.uk/#


When we went in, we had a lovely friendly greeting, and the lady behind the counter went through all of the G-F options. There were about 4 different choices of gluten-free bread (including paninnis),  plenty of sandwich fillings, soup, crisps etc. To Alexandra's immense excitement there were about 6 varieties of gluten-free cake, and although I know as a parent I should steer her away from calorie laden treats, I was thrilled to be able to offer her a choice of goodies instead of the usual 'take it or leave it'.


In the name of research (yes, I am dedicated), I ordered gluten-free sandwiches and cakes for myself and Alex. My husband (not fully convinced that G-F can live up to the status quo) ordered 'normal' food.  Our meal arrived quickly and looked good.

The sandwiches were lovely and fresh with a good amount of filling. On a (only slightly) less positive note, I was disappointed to learn that the bread was not home made but was bought in from Sainsbury's. I can understand why, in terms of the practicality of this given the range of choices on offer, but I would love to find somewhere that does really great home-made gluten-free bread.

The cakes on the other hand were home made, although not on site. Alex went for a strawberry muffin and I had a chocolate slice. They looked great, and tasted fine, although needed the lashings of icing that were spread on them as the sponges themselves were quite dry.

Although they may not have been the most 'out of this world' gluten-free offerings I've tasted, the warmth of the staff and the pleasure of our whole family being able to go somewhere and have a choice for our lunch means that this cafe will definitely go on my 'return to' list. Also as they offer gluten-free ice-cream and wafer cones,  I think Alex will be asking for a repeat visit for a while to come too!

Do you have any recommendations of places (either in Nottingham or elsewhere) that cater well for gluten-free kids? (any excuse for me to give it a go!!)

Jen