Wednesday, 27 November 2013

Safety or Singling Out? Managing a Coeliac in School.


So, Alex has started big school. She loves it, is making friends and enjoys learning. I am re-learning English using the phonics method and am quite shocked at how difficult a language it actually is. 'Because it just is' has sadly become my stock response to 'why is it pronounced that way mummy?'. 

On a gluten front things have been interesting to say the least. School is trying hard, but I suspect managing a child with Coeliac's, particularly in relation to school dinners, has been a steep learning curve for them. 

First off, on the first day, the usual chef was unfortunately off (not planned) so I had to rush home and pull together a packed lunch when the substitute chef was uncertain that she could pull off a GF meal. ('We could do salad but can't really guarantee anything else'- not quite the hot meal I had envisaged.)

When she was back I met with the school chef, who was very kind and accommodating. She had not catered for a Coeliac child before (there was apparently another child with Coeliac's in the school, but they were sticking to sandwiches until they saw how things panned out- sensible!) however, she had a relative with the condition, so had some understanding. She asked me to bring in some staples which I could get on prescription, which took me off the fence re the use of prescription food (see previous post). Having agreed what adjustments the chef could make, she told me we would also have to meet with a representative from the council (who subsidise school meals) who would go through everything we had discussed again. (Great use of time for a working mum, I love duplicate meetings). In any case, I was really encouraged by the school's response and the fact they were willing to cater for my child. And then the chef told me about the sash. I didn't really think about the implications of the sash until later when I was reflecting on the meeting and the positiveness of the school. 
'All of our allergy children have different colour sashes depending on what they need to avoid' -they what?-' yep, orange will be for coeliacs, purple for nuts, a different colour for dairy etc etc'.
On the surface, this makes sense- everyone who's serving the children food knows that they have to double check what they can/ can't have. In terms of social inclusion/ not singling children out/ highlighting difference- not so good! 

Does it work? Well, we're nearly at the end of term 1 and have had 2 gluten accidents so far. School aren't sure that they were they cause- there were stomach bugs going around. Given the time lines, symptoms and recovery rate, I'm pretty sure school had a (significant) role to play.( I also find it highly unlikely that all of their fish fingers are gluten free, as we were told, given the variation in price between GF and bog standard fish fingers, but if they say so! )

How and ever, it's always a learning curve when it comes to feeding a Coeliac, so I'm prepared to accept a few transgressions while they're learning the ropes (although poor Alexandra has paid the price). In the actual class room, the teachers have been very good at checking ingredients with me for food based activities, only giving appropriate treats and ensuring other children don't 'share' food. Hopefully things will continue to improve.

And with regards the sash- Alex thinks it's wonderful and makes her feel special, so who am I to argue for integration and social inclusion at this point- long may her pride in her difference continue!

Post Script: My husband read this post and wants me to point out the he stepped in and attended the meeting with the person from the council- he's very supportive!!

Friday, 27 September 2013

A check-in about check-ups!

We've recently had Alexandra's annual check-up with the paediatric gastroenterologist. On a positive note we've graduated (been down graded?) from seeing the consultant to seeing a registrar, which is a good sign (I think) that we're managing well. On the down side, at this most recent appointment, the registrar struggled to find the light switch in his office at the start of the appointment and struggled all the way through what should have been a straight forward check up following that.

To jab or not to jab?
Once I'd told him that we were managing Alex's diet well, apart from the odd blip here and there, I think the poor guy wanted to make the visit worth our while by offering some sort of doctorly advice. He started by telling me about the 'new research' that suggests Coeliacs should have a pneumococcal vaccine as well as the usual vaccines such as flu vaccine. 'I think the pneumococcal is part of the usual suite of childhood vaccines anyway', I suggested, 'but are you recommending that Alex should have the flu vaccine this year? Is she more at risk because of the Coeliac's?' (I  asked!) Beads of sweat suddenly appeared on this poor doctors brow. 'Oh, err, I don't really know, I'd have to look it up, I'll get back to you on it' came the response. 'Well why did you bring it up in the first place' I said in my head, but maintained my respectful silence which a Doctor is surely due. Luckily, Coeliac UK have a page of information on vaccinations which is straight forward and reassured me that no, she doesn't need a flu jab! (http://www.coeliac.org.uk/gluten-free-diet-lifestyle/vaccinations)

Dr Who did you say your name was?
I began to question whether this guy had picked up the wrong identity badge though and was actually a janitor acting up for the day, when I said that although she is following a gluten-free diet Alex sometimes complains that she wishes she was 'gluten' instead of 'gluten-free', as she explains it, and  he asked me did we want to trial a reintroduction of gluten into her diet. I think I loosened a few teeth with how quickly my chin hit the floor! 'WHAT THE F###!', I did not say, but screamed silently in my head. Five minutes earlier I had told him how violently sick Alexandra gets when she accidentally ingests gluten and he asks me if we want to deliberately give it to her?! I think he saw the incredulity in my eyes, because the beads of sweat started to roll down his face and he mumbled, 'actually, maybe we should wait until she's a teenager, there's no need to think about it just yet'. 'OR EVER YOU LOONEY', I thought, again in my head, as I quickly grabbed Alex's coat and ushered her out the door.

How it should be done!
Usually our follow up appointments are straight forward. Initially they were 6 monthly, and now yearly. Alexandra is usually weighed and measured, bloods taken and then a quick chat with the doc to make sure everything's ok. The blood test is the worst bit for Alex. You can get a cream to numb her skin before having the blood taken, but we no longer do that. This is because the palaver of putting the cream on, covering it in clingfilm, waiting for half an hour before then getting stuck with a needle seemed more traumatic than just taking the blood and getting it over and done with ASAP. When she was little Alex used to keep trying to pull at the plastic, and when she got a bit older, it just reminded her of what was to come and she started bawling when ever she caught sight of the clingfilm. I have always found the hospital nurses to be amazing though when taking blood- very kind, reassuring and the play therapists are great at distraction.

Following the follow-up....
Overall, our experience of follow-up care has been alright when we've actually seen the consultant. It's the process of getting to see her that's been the problem. Communication is not always easy within a big department in a big hospital. Because appointments are booked centrally, messages sometimes don't get passed through- as I discovered when I had a health visitor wanting to visit my home because I had not been taking Alex to her appointments. I hold my hands up, I did miss one appointment, but it was a few weeks after I had given birth to Katya, my second daughter, in the back of a car, so in fairness, my head wasn't quite in the right place. When I tried to rearrange, the next available appointment was 9 months later- on the day I was starting back at work. I phoned to cancel and rearrange this and they took the cancellation and agreed to send a new appointment. Unfortunately, neither of these things happened, so although a new (miraculously earlier) appointment was booked for me, I was never informed of it and got sent another DNA letter. Then the message that I'd cancelled the appointment on the day that I was due back at work never made it to the consultant, so another DNA letter- 3 strikes and you're out! I guess on the plus side, if I had been deliberately keeping Alex away from appointments, then this was picked up and something would have been done- you've done a good job safe-guarding system! I feel a bit irked though, that I was actually fighting to try and get Alex seen but my/ her record makes it look like I was neglecting her care. The lesson I learnt is to find out the consultant's secretary by name and ask to speak to her directly to try and get things sorted-which is much more straight forward!

Dieticians know how to party!
The other side of the follow up support at QMC has been the dietetics department. I met with a dietician a couple of times immediately after Alex was diagnosed and it was really helpful to talk through how to manage the diet. The best thing that the dietetics department has done while Alex has been with them though, is they hosted an Easter party a few years ago for all of their Coeliac kids and their families. It was fabulous- the kids could eat anything they wanted and meet other children with 'special tummies', and we could meet other parents at different stages in their Coeliac journey, share experiences, tips and support. For me, it helped to highlight that there are lots of parents of gluten-free kids out there, and we are all managing to get by and can really learn from each other about how to cope. I guess, in part that's why I started this blog!

Anyway,I know follow up care varies from place to place, and compared to some areas, we have it pretty good. Alex remains well and strictly ON her gluten-free diet, and by next year there'll be a new registrar to offer us their pearls of wisdom!

I'd love to hear anyone else's experience of follow-up care.

Jen

Sunday, 1 September 2013

There's a new crisp in town!

Do you know who cooked the crisps in your packet? What type of potato are they made of (hmm, come to that, how many types of potatoes could you actually name?!). Any idea where those potatoes were grown? These questions did not even occur to me until the lovely people at Keogh's sent us some of their Gluten-free hand cooked crisps.

Let me tell you- these crisps are a revelation! Great flavours, great texture, gluten-free and 100% Irish (and lets face it, you can't go wrong with something Irish!).  My husband is not a lover of gluten-free fare. He usually turns his nose up as soon as he sees 'Gluten-Free' on the packet and is reluctant to try anything that might be suitable for Coeliacs (often including my baking, fnhh fnhh fnhh!). However, when I asked him about his thoughts on Keogh's crisps he said (and I quote)  'Yeah, they were nice, they were good quality, better than Tayto anyway. They're at least as good as Kettle chips with better flavours'. The GF flavours include Irish Atlantic Sea Salt, Shamrock and Sour Cream, Atlantic Sea Salt & Irish Cider Vinegar and Sweet Chilli & Irish Red Pepper. Unfortunately they don't do a gluten free cheese and onion flavour, so I must disagree with hubby's comparison to Tayto, but I have to say they are by far and away the best gluten-free crisps I have ever tasted and blow all other non-GF competitors out of the water too. Top marks!

A word of warning if you have a child as inquisitive as mine- be prepared to be bombarded with questions about anyone who ever worked for Keogh's.  I made the mistake of telling Alexandra that the back of the packet tells you who cooked the crisps, along with where the potatoes were picked and what type of potatoes they're made from. I subsequently  had to explain that they don't tell you anything about what colour hair Marika or Dean have, what their favourite Disney princesses are or what toys they like- how remiss!

In any case, thank you to Keogh's for introducing us to their fab gluten-free product. My mum will be delighted that they are being introduced to Tesco in the UK, so she won't have to lug them over to us in her suitcase too!

Jen

PS I promise not to post about crisps again for the foreseeable future!!


Thursday, 22 August 2013

Starting school- as easy as ABC?

I guess for any parent your child starting school is going to be emotional. The disbelief that they have grown up so quickly, the worry about whether they'll make friends, the concern that they'll enjoy it and fit in (and secretly hoping they won't be thick as two planks and will keep up with the school work!). With Alexandra due to start school in September, I've had the added worry about how school is going to manage with her gluten-free diet.

When Alex was in a day nursery, we had quite a few accidents until we had the processes in place to protect her (see more here). We certainly got there in the end, but it took a while.

For the past year, Alex has been going to a pre-school for three hours a day. She wasn't eating meals there, and luckily, we had no gluten accidents. There were lots of examples of really good, inclusive practice when Alex was at pre-school, but also a few things that happened that made my heart sink.

For organised activities, the pre-school was fantastic. Alexandra's teacher was lovely and asked me where she could get gluten-free porridge when they were doing Goldilocks and the Three Bears (Asda do sachets if you need some for your little bear!) She also found a G-F recipe for the ginger bread men they made and double checked it with me. There were lots things like this where they were spot on.

Some of the less good issues were just a result of thoughtlessness or lack of understanding, for example the teaching assistants offering Alex chocolates on the way out of school on birthdays. At Christmas, they were making sandwiches for the kids and asked us to bring in some G-F bread so they could do some for Alex- a quick 101 in avoiding cross-contamination was required. My worst heart sink moment was at the summer party (when I came straight from work so had no spare treats in my bag). There was biscuit decorating (noooo), squash and biscuits (noooooo), and some ice pops, which would probably have been ok except the box had been thrown out so I couldn't check ingredients (nooooooo)! That said, Alex's teacher was very keen to learn about Coeliac's and I think will be a lot more confident if she has any kids with the condition in her class in the future.

Alexandra's new 'big school' is not connected to the preschool, so is another unknown. At the parent introduction evening we approached one of the teachers to ask whether it would be possible for the school to cater for Alex's condition. (Kids are in school until 3.30 in the UK, so have the option of having a hot school meal instead of bringing in a packed lunch). The teacher requested a letter from our GP to confirm that Alex had the condition, and agreed to meet to discuss how to manage it. When we went in for Alex's visit, she had obviously discussed the condition with the cooks, who told her they had catered for kids with Coeliac's before and it should be fine. She asked for any written info about what Alex could and couldn't eat so I directed her to the Coeliac UK website (they have a section for caterers on it http://www.coeliac.org.uk/food-industry/caterers-and-restaurateurs/caterers-and-restaurateurs-faqs). We also agreed that it would be useful for me to bring in a 'treat box' of things that Alex can have if other children bring in birthday cake or anything like that. In September we will be writing up a care plan highlighting any special measures that the school will put in place to manage the condition and this will be reviewed and updated if there are any issues. Watch this space.....!

When Alex was initially diagnosed, the consultant told us that the move to school, when she would be out of our sight more and wanting to assert her independence, was a time to be ultra-vigilant. At the time it seemed like forever away, and now it's looming. Overall, I'm feeling hopeful about the diet- now just need to worry about how to convince Alex that pink shoes aren't appropriate for a navy uniform and that writing looks better going across the page instead of down the side!

Jen

PS: this is the ginger bread recipe that the school used. I can't comment on taste as it was gone by the time I picked her up- probably a good sign!

340g plain G-F flour
4oz softened butter/ marg
100g soft brown sugar
190g golden syrup
2 teasp ground ginger
1 teasp bicarbonate of soda


  • preheat over to 190 degrees C.
  • Beat the sugar and marg together until light and creamy.
  • Add the golden syrup and sift in flour, ginger and bicarbonate of soda.
  • Mix until a rough crumb begins to form and then work the mixture into a smooth dough using your hands.
  • Refrigerate dough for 10 mins or so until firm.
  • Roll out dough between 2 sheets of cling film or baking parchment until 4mm thick.
  • Cut out shapes using cookie cutter or roll out small balls and flatten slightly onto a non-stick baking sheet or tray lined with baking parchment.
  • Bake for 8-10 mins until golden brown. Let cool on tray for a minute or two then transfer to wire rack.




Thursday, 8 August 2013

Avoiding cross-contamination

When we met with the paediatric dietician following Alexandra's diagnosis of Coeliac's she emphasised the importance of avoiding cross- contamination in the kitchen. I had visions of having to get dressed up in Homer Simpson-like radioactivity suits, masks and gloves, the whole nine yards, when ever I touched anything to do with her food. (An excuse for an extension to the kitchen was also in the back of my mind, but that hasn't materialised yet funnily enough!) The dietician really pushed the fact that the tiniest crumb could make Alex sick as her stomach was so damaged (she was right as it turns out- point to the NHS!).

However, the reality of avoiding cross-contamination in the kitchen is not as difficult as first imagined. I guess everyone who has to deal with Coeliac's discovers their own systems for keeping themselves/ their children safe. These are some of the things that work for me:

  • Separate butter and jam- marked with a sticker.
  • Squeezy bottles of mayo, ketchup and honey instead of jars.
  • Different plates for my 2 children . This is not necessary in terms of contamination, but helps me remember which food is for who if I'm doing non-GF stuff too. (although as I mentioned in a previous post, this doesn't always work!)
  • Separate wooden chopping board and bread knife for GF bread. 
  • Toaster bags for the toaster.
  • A cupboard for GF dried foods (pastas, crackers, mixes etc).
  • I don't buy 'normal' flour any more- GF flour is fine for most things.
  • A drawer in the freezer for GF food. 
  • I always wash Alexandra's plates and cutlery first when I'm washing up- anything with gluten toast crumbs gets rinsed and washed last.
  • Tinfoil on the grill if I'm doing anything GF. 
  • When I'm preparing GF and non GF stuff (eg sandwiches/ packed lunches) I split the kitchen in 2 and keep butters, knives, breads in their own halves of the kitchen. I prepare all the things I'm going to be using for both meals (eg cutting cheese) in the GF side. (I know this sounds obvious, but I have almost got caught out by using the same knife for both butters before.)
  • I have gotten rid of things like stock-cubes that had gluten in them and only buy GF versions now- most of my cooking tends to be gluten-free when possible. 
I know some families go completely gluten-free when a family member is diagnosed with Coeliac's. We haven't, both because it would be very expensive, and because (selfishly) myself and my husband don't particularly like some of the GF foods that the girls eat. The range and taste of gluten-free food is changing and improving all the time though, so we may go completely over to the dark side at some point in the future- you never know!

Do you have any 'top tips' to avoid gluten contamination in your kitchen? Would love to hear any suggestions.

Jen


A positive response from 'the Man Inside the Jacket'-GF Tayto on the way!



Mr Tayto has responded to my letter with the following:

Hi Jennifer, thanks very much for your letter - I enjoyed reading it. As you know, there is a lot involved in making sure any product is really gluten-free and myself and the team at Tayto have been working very hard on this for a while now. We hope that sometime next year we will be able to introduce a product suitable for all gluten intolerant people so everyone can enjoy Tayto. I'll keep everyone posted on our developments as much as possible. Thanks! Mr. Tayto

Thank you Mr Tayto, you have made a four year old girl, her mummy and I'm sure many other people with Coeliac's very happy!




Thursday, 1 August 2013

Viennese Fingers- sans gluten

I've been umming and ahhing about whether to post recipes on here or not. There are lots of blogs and webpages with some really great recipes by cooks and chefs that are far more talented than I am. But then I figured, if I (a lucky-enough-to-be-a-gluten-eater) find a gluten-free recipe that I like to eat, then why not share the love!

These Viennese fingers are adapted from a Mary Berry recipe. (They were for a 'bake-off' in work to raise money for Macmillan, so I opted to adapt a recipe from the queen of bake-offs!) They are not quite as 'short' as biscuits made with normal flour, but they are perfectly palatable. They also freeze well if you wrap and freeze them before you ice them.

Ingredients
Biscuits:
350g margarine
120g caster sugar
350g self-raising gluten-free flour (I got mine from Asda)

Butter cream icing:
75g butter
175g icing sugar
1/2 teasp lemon essence

Melted chocolate for dipping.


Method:
Cream the marg and sugar together until they are light and fluffy.
Stir in the flour.
Pipe the biscuit dough in fingers (using a star nozzle) onto a greased baking tray.(This is the most fiddly bit.)

Bake in an oven, pre-heated to 160°C, for about 25 mins. 

Leave to cool for about a minute before transferring to a wire rack to cool.

Make the butter icing by mixing together the icing sugar, butter and lemon essence. Match up 2 similar size biscuits and use the butter cream to sandwich them together.

Dip both ends of the sandwich in melted chocolate and leave to cool on a wire rack. (If you put baking paper under the rack you can catch the drips and re-melt them if needs be.) 

Dust with icing sugar, boil the kettle for a cuppa and enjoy!


Note to self: Try not to let the kids see them or there'll just be crumbs left by the time the box gets to work! 

Jen

Monday, 22 July 2013

An open letter to Mr Tayto!

Dear Mr Tayto,

I have always loved your crisps. They are as much a part of childhood in Ireland as playing keepy upies and watching Bosco. 

Now that I live in England I don't have the same easy access to Taytos, but my mum uses all of her (not very large) Ryanair cabin baggage allowance to bring me a supply whenever she comes.  She has to leave her toiletry bag in my house so she has room for all the crisps, that's how much I love them (and I'm not joking about the toiletry bag!)
All other cheese and onion crisps are pale imitations of your original and best flavour- they are bland, bland, bland in comparison. (Ok, King crisps come a close-ish second, but you can't get them over here either, as you know because you make them too. Gold and silver in the best cheese and onion crisp category- well done!)

Tayto go with almost every other food type, and I can see where you were going with the crisp flavoured chocolate,but that didn't quite hit the mark and was a step too far. However, I digress, that's not what I'm writing to you about!

When we were home in Ireland for a holiday in July I was very excited to have the opportunity to visit Tayto Land. What an idea-combining fun and flavour- what more could you want?! I packed up my 2 kids and hubby and off we went with a picnic for a day out- oh the excitement! Well, excitement for me anyway. My husband (a Brit) was reared on Walkers and doesn't appreciate the true wonder of the Tayto flavour. My daughters are familiar with 'mummy's special crisps' but had not fully understood the legend that is Mr Tayto.  

Things changed that day in July.  My older daughter chased Mr Tayto all over the park trying to get a photo and making him wave (the poor old guy must have been close to having a heart attack in that suit on the hottest day of the year so far). My  22 month old can't quite talk, but she now points maniacally and mutters 'Tay-yo,Tay-yo' whenever she sees anyone in a red suit (God knows how we're going to explain that to Santa at Christmas time!) 

Both the girls wanted a Tayto souvenir- Alexandra, the 4 year old, got the teddy and Katya got the plastic money box (probably a good job Katya chose the more robust Mr Tayto as he has been dumped in the bath and paddling pool on a number of occasions since- perhaps mistaken for a duck in a suit rather than a crisp in a suit in the eyes of an almost two year old? Alex's plush Mr Tayto on the other hand has become Mrs Tayto and married the plastic fellow, despite the paddling pool gunk and soap scum that is starting to build on him!)


But I digress again! We had a great day at the park and your marketing department did an impressive job on the impressionable minds of my young daughters. The disappointment came when your lovely staff member sitting in the big Tayto lorry handed us each a bumper bag of Taytos to take home at the end of the day.  Alex was dying to try her Taytos, but I had to grab the bag off her and explain that Taytos contain gluten. Alex is a coeliac so gets very sick if she eats any wheat or gluten containing products. I couldn't explain to her why there was gluten in the crisps, when there isn't in cheese, onion, potatoes or sunflower oil but how and ever, she couldn't eat them. There are approximately 45,000 people with Coeliac disease in Ireland currently. If you made gluten-free Taytos and if each one of those people with Coeliacs bought a bag of Taytos just once that would make you over £20,000 gross. If you did a better job on gluten-free crisps than you did on the chocolate, then I bet all the Coeliacs would buy a lot more than one bag, meaning mega-bucks. If you made Taytos that didn't contain gluten, my mum would probably pay to put a big bag in the hold on Ryanair  to carry them over to England,so you could ask Ryanair for a share or two for the increase in their business too!

Please, please, please consider making gluten free Taytos so that I can introduce my daughter to your unique and fantastic flavour and all of my Coeliac friends can escape crisp blandness!

With thanks for your consideration,

Jen

Sunday, 2 June 2013

Cheat's Guide to Gluten-free Cooking for Kids!

I enjoy cooking and baking when I have the time and energy. I would love to be able to spend time every day buying and cooking fresh, delicious and nutritious gastronomic delights. The reality is, I don't have the time or energy to cook fresh stuff every day, and even if I did, my family's favourite meals seem to be the ones that are easiest and contain the least number of fresh vegetable and/ or 'green stuff'.
Sometimes I feel guilty that I resort to bunging frozen stuff in the oven, or using a jar instead of chopping my own onions and mixing spices, but then I think, ah, sod it, I'd much rather have a cuddle with the girls watching and talking about Peppa Pig!

So, when the diagnosis of Coeliac's came I had worrying visions of having to buy copious amounts of raw ingredients, making everything by hand, and never touching another packet of mix or sauce again. However, it's not that bad!!

I do cook fresh dinners (and freeze portions) on a regular basis (honest!), and I could post some day to day recipes here. However, there are lots of really good websites with lovely gluten-free recipes already on t'internet, so I thought it might be useful  to share the easy, quick-win products I have found useful for feeding a gluten-free child. All of these products I have found in my local Asda, Sainsbury's or Tesco supermarket, so should be easily available.

Breakfast:
We've tried lots of options for the first meal of the day. Alexandra had eaten Weetabix before she got sick, and I haven't come across a substitute for this. I got very excited when I found  Asda instant gluten-free porridge sachets, but this went down like a lead balloon, despite (or maybe because of) stories about bears. The big breakfast hit (although I promised to never buy 'those sugary children's cereals' in my idealistic pre-parentship days) is Doves Farm Chocolate Stars. Alex usually eats them with yoghurt or milk, but is happy to eat them dry too, so they can't be too bad. We also get various supermarket own brand GF cornflakes or rice crispies every now and then for a bit of variety, however, they usually end up mixed in chocolate and spooned into paper cases!

In my bag:

I usually have:

  • snack packs of raisins
  • fruit puree pouches (I know they're not great, but although I keep trying fresh fruit, Alex is not very keen)
  • American Muffin Company Gluten Free Chocolate Chip Mini Muffins.  These muffins are great for kids and for transporting because they are small, individually wrapped and not too crumbly.

Don't get me wrong, I'm not always stuffing food in my children's faces when we're out and about, but I always have something in case we're caught unawares (like the time our local play group had a party of sandwiches, biscuits and cakes which I didn't expect and poor Alexandra sat and watched all the other kids eating!)

Popping around for coffee:
If I'm visiting a friend with Alex in tow I will often bring some GF biscuits. Most are fine, but kids always love pink wafers and Rivington Foods do Pink Panther Gluten Free Wafers!

Lunch out:
If we are going to a friend's for lunch I always check with them before hand if they want me to bring food for Alex, but regardless I usually bring a jacket potato and a tub of Heinz Baked Beans Snap Pots, just in case. These are portable, not perishable and as long as the person has a microwave, no real contamination issues.

If we end up going 'out' out, I will usually look for somewhere that does a jacket and beans. The only caveat if you're eating a jacket potato out is that some pre-grated catering cheeses contain gluten as they use flour to stop it from sticking together.

Lunch in:
Scrambled eggs, baked beans, Orgran Tinned Spaghetti in Tomato Sauce on GF toast are all quick and easy. Mrs Crimbles Cheese Crackers are a hit, but unfortunately don't come in small packets, so once opened need to be eaten fairly quickly. Nairn's Gluten Free Oatcakes are great (although make sure you get the right ones, they also do non-gluten free oatcakes), and are wrapped in small packs, so easier to keep/ take out on a picnic.

I used to always have Walkers Cheesy Wotsits in the cupboard until they very irritatingly changed their factory and cross contamination became an issue (gutted doesn't describe how I felt- didn't leave the house for about a week!!). Now the crisps of choice are either Pombears or Bob the Builder/ Fireman Sam Snacks by the Dormen Food Company-they come in smallish packs and are very attractive to kids- good for a treat from time to time.

Dinner:
There are lots of GF pastas available. For the first 6 months or so after she was diagnosed Alex refused all of them (I think she knew what had been making her sick, she had begun to refuse things like bread and pasta in the run up to the hospital stay). The turning point was Bob the Builder Corn Pasta Shapes, made by Fun Foods. These are shaped like characters from the programme and very attractive to toddlers! (personally, I think they taste awful, but both my girls love them.)
Dietary Specials Pizza Bases are great for making your own pizzas- Alex loves choosing toppings and making patterns with them! You can also get pizza bases on prescription for children with Coeliac's.
I usually have Young's Gluten Free Fish Fingers in the freezer, along with Birdseye Potato Waffles or Asda carrot and potato waffles.(Not all own brand potato waffles are GF, so watch out!) I also stash Doherty's Gluten-free Pork Sausages in the freezer, which the girls eat, however, fresh sausages are usually nicer. Debbie and Andrew's Harrogate Sausages are our top pick, although Asda's own brand are also good.
When making sauces etc, Knor Reduced-salt Stock Cubes are gluten free and Kikkomen do a GF Soy Sauce. For pre-made sauces, most of Lloyd Grossman's sauces are gluten-free and tasty.

The Food and Drink Directory that Coeliac UK (http://www.coeliac.org.uk/gluten-free-diet-lifestyle/electronic-food-drink-directory) put together is fantastic for checking what products are gluten-free and for getting ideas when scanning through. If you are newly diagnosed with Coeliac's, you can get 6 months free membership, with the directory included. It's updated every 6 months or so, so I have given my old directories to family members- they're not fully up to date, but still handy to have!

Gluten-free cooking has not been as challenging as I'd initially feared, although vigilance is always required (it's so easy to pull out a store cupboard staple and dash it into the pot only to start cursing 2 minutes later because it's not GF). As with cooking for any child, we've had to keep encouraging Alexandra to try new stuff, and it's still a battle to get her to eat her greens. I would love to be able to say that my children eat only the best, healthiest of meals, but as you can see from this post, it's not quite true. I'm happy to compromise though, and spend the time saved playing princesses!

Do you have any other quick and easy favourites for feeding gluten-free kids?

Jen



Monday, 27 May 2013

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

Monday, 13 May 2013

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!!




Monday, 6 May 2013

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!


Thursday, 2 May 2013

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

Wednesday, 24 April 2013

The Genetics Factor

Katya, my younger daughter (now 19 months), has been a little off colour of late. In my head, I know it's just a bit of a cold  (and the fact that she fell off a kitchen chair and bashed her head on the floor), but my gut can't help tightening just a little but whenever she's unwell.
We waited so long and made so many excuses before getting help when Alex was sick, and knowing that there is a genetic element to Coeliac's, I do worry about Katya having it.

It's a family affair:
Although Coeliac's can run in families, Alex is the first person in either mine or my husband's (extensive) clans to be diagnosed with it. That said, it's most commonly diagnosed in people between the ages of 40 and 60, so there's still time for some more gluten-intolerants to emerge! Hopefully no one else will be affected, but there is an increased risk that one of us may have it.
The National Institute for Health and Care Excellence (NICE), who make recommendations for best practice in the prevention, diagnosis and treatment of ill health, recommend that first degree relatives of people who are diagnosed with Coeliac's disease get tested for it using a blood test. (Find the NICE Guidelines here: http://publications.nice.org.uk/coeliac-disease-cg86/guidance.) This means parents, siblings or children of the person affected. This is not something that was offered to us at any point during Alexandra's recovery, although I know of parents in other areas who were offered testing almost as soon as their children received the diagnosis.

Testing times:
When I found out that I was pregnant with Katya I expressed concerns to Alex's consultant about the new baby having the illness and was told we could get her tested when she was older if we wished, once she had been weaned and had gluten in her diet. When my husband asked about this again once Katya was born, the consultant told him that there was no need to get Katya tested unless she was displaying symptoms of the illness. I hadn't been able to make that particular appointment and (being the gobby one in the relationship) would probably not have accepted the consultant's decree without a bit more of a challenge. For a start, Alex hadn't displayed any of the common symptoms of Coeliac's (diarrhoea/ vomiting)  for a very long time- all we noticed was her getting more and more cranky and crying alot (not unusual for babies!). Secondly, I really didn't want to have a very sick baby and to put Katya through the awful experience of becoming unwell before doing something. But most importantly, I was becoming really quite paranoid about any little whimper or grumpy patch that Katya had, feeling worried at any teething pains or changes in routine, over-analysing any picky behaviour with food and therefore I was 'giving in' to Katya's behaviour and not setting the same boundaries as I had done with Alex for fear that it was Katya getting sick that was affecting the way she was acting and responding.
Luckily, our GP was very understanding and had absolutely no hesitation in getting Katya tested- and also offering to have myself and my husband tested if we wanted to be.
All it takes is a simple blood test, and luckily for our little family, all of our results came back negative for Coeliac's.

I know that this is probably (but not necessarily) the end of the story. The negative test means that our bodies are not producing anti-bodies to gluten at the moment, but I have been told that there is a slim chance that Katya may go on and develop it at some point in the future (although it is unlikely). Hence the slight worry when our toddler throws tantrums. As I said, my head knows it's silly, but I'm still just a little bit vigilant.
Has anyone else has more than one person with Coeliac's in the family? At what stage did the illness get picked up? Has anyone had a  sibling that has been diagnosed further down the line?

Jen


Thursday, 18 April 2013

A Coeliac abroad.

I'm pretty good at English and relatively articulate, yet still  it feels like I'm speaking a foreign language at times when I'm trying to explain what Alex can and can't eat. So heading to a foreign country where they really do speak a foreign language (which I don't speak) and having to explain things to real foreign people filled me with more than a vague feeling of dread.

When we decided to go to Portugal for a holiday last year I had hardly finished clicking 'confirm' on the flight bookings before I started trying to work out how much of my luggage allowance could be taken up with gluten-free staples, what was the best way to pack pasta without it being crushed and whether it was worth taking fresh gluten-free bread or just the vacuum packed variety.
When I broke the news that we would only have room in the cases for one change of clothes and some swimming togs each, my lovely hubby pointed out that there were bound to be people with Coeliac's in Portugal (it's definitely not a disease that's confining itself to the UK!). Really all we needed to do was learn the Portuguese word for 'gluten', work out a few hand gestures related to putting food in our mouths and shaking our heads and we'd be fine. Cue a frantic internet search for Portuguese-English medical dictionaries.

54 ways to say 'I have Coeliac disease'!
Well, the wondrous world wide web did better than translating a mere word- I stumbled across a website that has got 'gluten-free restaurant cards' to download in 54 different languages (seriously-54!!).  The cards explain that the holder has Coeliac disease and briefly what they can and can't eat. Not only that- but it's free!! (although if you can leave a donation to support the running of the site it's appreciated.) The cards can be downloaded here: http://www.celiactravel.com/cards/.

To our absolute joy, the card we downloaded worked perfectly. Every single person we showed the card to nodded their head and was able to show us what was on the menu that Alex could eat- and if there was nothing on the menu, they made something especially using fresh ingredients. Contrary to our fears, it was actually less of a problem to eat out in Portugal than it sometimes is here in the UK and I would absolutely recommend Albufeira to anyone on a gluten-free diet.

Additionally we found a couple of supermarkets which had gluten-free ranges of food, so we could have survived without the wheelie bag load of supplies, although I would still always pack some GF carbohydrates just in case....

It's a matter of insurance:
We had heard that having Coeliac's shouldn't affect your insurance premium for travel insurance as it isn't an allergy and hospitalisation shouldn't be required if gluten is consumed. This may be true for some of the larger insurers, but we took out a policy with a  company called 'Holiday Safe'. When we disclosed Alexandra's condition, they added £20 to her premium and increased the excess payable if she were to require any care abroad. Luckily, they were still cheaper than most other insurers, so we didn't make too big a deal,but it was a bit irksome it must be said. In future I'll definitely be checking if the insurance company adds to the premium once we've disclosed about the Coeliac's to make sure we still get the best deal.

We Are Sailing:
The only other place that we've travelled to abroad since the diagnosis is Ireland where (although my hubby wouldn't always agree) they speak English. We had a fantastic experience on the way with Stenaline ferry company. They have well marked gluten-free options on the menu and when Alex turned her nose up at what was on offer the chef made her something from scratch. Thumbs up Stena!

I have to say I still have some shadows of concerns lingering in the back of my mind at thoughts of travelling too far from home and having to untangle what's in every dish we come across, rather than just enjoy the experience. But maybe it would be like that with kids anyway, regardless of the gluten-free requirement. Given the results of our recent adventures I'm certainly not going to let the GF factor stop me!

I would love to hear of any other experiences of gluten-free eating in other countries.

Jen

Wednesday, 10 April 2013

Gluten-free 4 year old's rainbow party- Mission Complete!

Well, my first completely gluten-free child-friendly catering attempt is over. And no 'gluten accidents', complaints about food or hungry children as far as I'm aware, so in food terms- a success!

Alexandra's choice for her birthday cake was a chocolate 'Hello Kitty' cake. I adapted a recipe from the Gluten-free Cookbook for Kids to make a chocolate orange cake (see below), cut it to shape, covered it with a merangue icing and used Dr Oetker Ready to Roll Regal coloured icing for the details. I was actually quite impressed with it-the cake was nice and moist and not obviously lacking in gluten!

The 'theme' that Alex requested was a rainbow party, so we did food to match.

Also in the menu were:

    • Sandwiches made from shop bought g-f bread.
  • Rainbows of fruit.
  • Chocolate rice crispy cakes made from Nature's Path Gluten-free Crispy Rice decorated with Asda chocolate beans.
  • Rainbow cupcakes, using the Dove's Farm recipe I've mentioned previously, lemon butter icing and Haribo Rainbow Twists.
    • Pom-bear crisps (which are gluten free)
Alex was thrilled that she could have anything without asking and all of her friends were able to have everything that she had too!

Recipe for Chocolate Orange Birthday Cake
150g margarine
450g caster sugar
3 eggs
2 teasp orange essence
60g cocoa powder & enough hot water to make into a paste
200g gluten-free self-raising flour
200g ground almonds
1 1/2 teasp bicarbinate of soda
1 1/2 teasp xanthan gum
large pinch salt
340ml milk
1 1/2 tblsp white wine vinegar.

Method
Cream the marg and caster sugar, beat in the eggs and orange essence and cocoa paste. 
Mix the other dry ingredients together in a separate bowl.
Mix the milk and vinegar in a jug.
Alternately fold in the the dry ingredients and milk into the butter mixture a little at a time. 
Pour into LARGE greased tin.
Bake at 160 degrees for about 50 mins until knife comes out clean.

Would love to hear about any other gluten-free party ideas!
Jen

Monday, 1 April 2013

Eating out: The Good, the Bad and the Ugly!

Alexandra is quite fussy with food- not keen on vegetables or salads. Eating out with a toddler or young child can be hard enough if you have a picky eater, throw in the gluten-free requirement and it can become as farcical as a Carry On film.  We have had a variety of experiences in restaurants from the fantastic to the distinctly under-par.

The Good:
Many chain restaurants have an 'allergy book' which lists everything on the menu and whether it contains gluten, lactose, nuts etc. This is really helpful when it comes to sauces, dressings and the like, and although choices are often limited, at least you know what you're getting.
Nando's (chicken chain) deserves special mention for having a large gluten-free range.
We also had a lovely waitress at Pizza Hut (who now do GF pizza bases) recently who took Alex, along with the 'book', to help her pick from the ice cream factory and then felt sorry that she couldn't have all of the sweets so gave her a free bowl of 'pink' ice cream. Made Alexandra's week!

We have also been surprised at how accommodating many smaller cafes and restaurants can be. On holiday in Cornwall we were amazed and delighted at the number of tiny venues in little one horse towns that advertised GF food- definitely recommend it as a holiday destination for any coeliacs.

The Bad:
We still need to have our eagle eyes peeled even if a meal purports to be gluten free. Unfortunately, not all restaurant staff have an understanding or training when it comes to special dietary requirements. An example of this happened recently:
Fortunately: we went to a Frankie and Benny's restaurant that had an allergy book.
Unfortunately: it took ages to find.
Fortunately: when it was found it turned out that their burgers are gluten free.
Unfortunately: the gluten free burger arrived in a bread bun (yes- a normal flour filled bread bun!)
Fortunately: we noticed and asked for it to be changed.
Unfortunately: the waitress thought that taking the bun off the plate and re-serving the food would be ok.
Fortunately: our eagle eyes were peeled!
Unfortunately: it took another 15 minutes for a fresh burger to be cooked by which time everyone else was finishing.
Fortunately: the waitress and the chef will be more prepared (hopefully) the next time someone asks for gluten free food!

The Ugly:
Out with a friend and the kids recently we thought we might pop into All Bar One (who operate a child friendly policy) for some lunch. I asked the waiter if they had any gluten free options on the menu. 'No' he responded glaring at me and walked away. As we were putting hats back on and he bustled by again I was feeling a bit militant (it was freezing outside) and asked why not- they should have. 'Fine, I'll check in the kitchen' he mumbled and walked away again. We halted with the hats half on- do they/ don't they? Two minutes later the waiter harrumphed (yes I think harrumphed should be a word!) back and grudgingly informed us they do have gluten free options and he supposed we wanted a table. Err- no! Do you think I'm going to trust my daughter's well being with a waiter who's frostier than the snow falling outside? (we went to Pizza Hut!)

There are plenty of examples of good and not so good options and service, I guess as there is in any industry. I do feel that some basic awareness training for all staff or a quality standard for restaurants that can really support people with special dietary requirements would be good though, to help make choosing a restaurant a little bit easier for the (surely very high number of) people with special dietary requirements.

What have been your experiences of eating out with a child with coeliac's-any hot tips?

Jen

Sunday, 24 March 2013

Gluten-free cakes, bakes and mistakes!

When I was growing up one of the most memorable things about birthdays were the amazing cakes my mum used to make. We would spend ages deciding what kind of creation we wanted, looking through a fantastic cookery book that Mum had that had pictures of every type of cake that a child could imagine- castles, cars,  bunnies, .

Mum is a fantastic cook and passed on her love of baking. I really enjoy seeing butter, eggs and flour coming together into a tasty triumph (or on occasion a fantastic flop). That said, I'm not a creative baker. I need a recipe to follow and can make a small change or two with out too much risk (substitute orange essence for lemon!) but I am not good at guestimating quantities or making up recipes as I go along, so learning to bake with new ingredients was a challenge.

Learning from the experts:
Very early on, I went looking for a good gluten-free cook book.  There are plenty on the market and also lots of recipes available on line. I picked up Phil Vickery's 'Seriously Good! Gluten-Free Cooking'- which is a nice recipe book, but some of the meals are a bit too sophisticated for a toddler and wouldn't be the quick and easy type of food I would be preparing after a busy day at work. I didn't like the fact that you have to create your own flour mix using rice flour, corn meal and corn flour for most of the baking recipes. I've found that baked goods using this mix are a bit coarse in texture.  I also got 'The Gluten-free Cook Book for Kids' by Adriana Rabinovich. This is a nice book, with lots of tips for coping with a child on a gluten-free diet. She also has a website with recipes and tips:  http://www.glutenfree4kids.com/ . The only downside of the cookbook is the lack of pictures- I quite like to see what I'm aiming for!
Additionally Coeliac UK and most companies who provide gluten-free products have recipes on their websites to help you make the most of their ingredients.

How to adapt:
I've found the best gluten-free baking  recipes are ones that don't deliberately set out to be gluten free, they just don't contain flour. However, most 'normal' recipes can be adapted fairly easily. Most of the big supermarkets sell gluten-free flour- often both plain and self-raising. Dr Oetker do a gluten-free baking powder which can be used of you only have plain GF flour and need self-raising. For some reason I find that GF flour and flour mixes are a little on the dry side, so I usually add a little bit more liquid to recipes where I've substituted GF flour for normal flour. I was introduced to the other saving grace of gluten free baking by a friend from work- xanthan gum- honestly, it's the future! Just half a teaspoon into any recipe stops it becoming crumbly and falling apart, as many recipes seem to do.  (Just don't spill it- it's a pain to clean up!)

Birthday bakes and mistakes:
For Alexandra's 2nd birthday, her first after being diagnosed, I decided to go easy and do GF cupcakes. Dove's Farm have a simple recipe here: http://www.dovesfarm.co.uk/recipes/quick-fairy-cakes/ . I was really proud of myself and was having fun doing different toppings and decorations  when I thought to have a look at the sprinkles and sugar strands I was liberally shaking all over my GF goodies. Yep- 'may contain wheat and gluten'. There were about 4 buns that I hadn't finished which could be rescued, but the rest were all off limits to the birthday girl!
I have since been very careful with sprinkles and cake toppings, and I have to say gluten-free ones aren't that easy to find. The nicest sprinkles I've had have come from the US via my Mum and sister.

Alex's 3rd birthday cake required a bit more experimentation. Remembering how much I loved choosing a cake and not wanting to deny Alex the opportunity I asked her what type of cake she would like. 'A pink princess castle' please was the response. The web provided lots of examples of castle cakes- most with ice-cream wafer cones for the turrets (not an option), shop- bought swiss-rolls (not an option), and sugar-paste (which I am rubbish at).
Eventually after a few disasters I managed to adapt a recipe for a swiss-roll and cobbled together a cake which ticked all the boxes.

Gluten -free Lemon Swiss-roll Recipe

4 large eggs
125g caster sugar plus a little extra for rolling
125g Gluten-free plain flour
1 teaspoon Xanthan gum
1 teaspoon gluten free baking powder
1 small lemon, zested and juiced
2 tablespoons of lemon curd- home made or shop bought willdo
Butter for greasing



Method:
·        Heat oven to 220 degrees C
·      Lightly grease swiss roll tin and line bottomwith baking parchment, lightly grease parchment
·      Put eggs in bowl with caster sugar and whiskwith electric mexer until pale yellow and thick enough to leave slight trailwith whisk
·     Seive flour, xantham gum and baking powder intomixture and fold in gently
·       Grate the zest of the lemon and add, along withjuice of lemon and fold through
·      Pour into tin and gently spread to ensuremixture reaches the edges
·     Put in preheated oven for 10 minutes, untilsponge is golden and starting to come away from edge of tin
·      Prepare large piece of baking parchment bysprinking with caster sugar
·      Turn warm sponge out onto parchment, removelining parchment and trim the edges off sponge
·   Score slightly about an inch from one short end,then roll up the sponge with the sugar covered baking parchment and leave tostand (seam side down) for about 3 minutes
·     Meanwhile, heat lemon curd for a few seconds inthe microwave
·     Unroll the sponge and spread with lemon curd
·      Roll up again and wrap tightly in bakingparchment and leave to cool

     You can use jam instead of lemon curd or make it chocolate by adding cocoa powder if preferred.

     Alexandra will be 4 soon and has requested a chocolate 'Hello Kitty' cake. It will also be the first party she has had that hasn't just been family and I intend to have a completely gluten-free event. Any ideas or suggestions welcome!

Jen

How do you know if she's had some gluten?

Sometimes people have not understood the implications of eating gluten for Alexandra. They think being gluten-free is a lifestyle choice, or that a little bit of gluten won't matter too much. We've had waiting staff in restaurants acting like we've asked the earth when we've questioned them about the ingredients and cooking methods used.
There is a simple reason as to why we are so 'fussy'.
When Alex consumes even a small amount of gluten she starts to vomit. She throws up until everything in her stomach has been ejected and then she continues to retch. She brings up bile. If she has a drink of water to clear the taste she throws this up. Alex's body doubles over and heaves with the convulsions that are gripping her stomach. It lasts for hours and she becomes exhausted, but whenever she starts to drift off to sleep another wave of spasms start and she wakes crying and gagging and spewing.
There is nothing at all that I can do except hold her and try to calm her down, curse whatever situation has caused the reaction and pray each time that she starts to snooze that this is the end of the episode. When she wakes after finally getting some rest she is right as rain again and all we have to do is wash the sick out of her hair and pile all of the towels and blankets we have used to try to protect the surroundings (her aim into a basin isn't the best!) into the washing machine.
I know it could be worse- it's not a potentially fatal reaction like a peanut allergy, but it does have long term implications. Coeliac disease is not an allergy, it's an auto-immune disease that affects the lining of the small intestine and prevents it from absorbing food. If a coeliac does not follow a gluten free diet, not only do they experience symptoms in the short term (diarrhoea and vomiting are common)  it can also lead to osteoporosis, anaemia, infertility and bowel cancer (http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Complications.aspx).
However it is because I can't bear to see Alex in such pain and because I hate feeling helpless that I continue to be so awkward in restaurants, at parties, when visiting.

Will she grow out of it?
We get asked this alot too. In fact, I don't know where she got the idea but Alex told her daddy recently 'I'll be able to eat it when I'm older' in relation to some cake that she wasn't allowed to have. She was quite distraught (for about 2 minutes!) when we told her that she would always have a special tummy and have to eat gluten-free food.
Her reaction should hopefully get less extreme as she gets older. Even in the few years since she was diagnosed the 'waiting time' between consuming gluten and getting sick has increased. (Although on the downside this can make it harder to work out where the gluten accident happened!) However, it isn't something she'll grow out of and Alex will always have to watch what she eats.

Has my Mummy said I can have it?
A friend pointed out recently that if people didn't know about Alexandra's condition they would think I was a very strict parent. This is because she asks about every morsel that passes her lips when we're out and has perfected a forlorn look when I tell her she can't have a cake or a biscuit. On the plus side it means that, although we will always be on the look out for gluten lurking on the buffet table, Alex is starting to learn how to manage her own condition now.
As soon as she started learning to talk we encouraged Alex to start asking 'has it got gluten in it' when ever we ate out. She had no concept of what gluten was, I'm not sure she understands what it is now, but it meant that she didn't just take whatever food she could see and raised some questions for those around her.
We are lucky that all of our friends and family are on board and are as vigilant as we are about what Alex eats, sometimes stopping her from having something that Alex knows she can have until they've checked with us first- always better to be safe than sorry.
Even with all this protection though, we sometimes have a wake up call. We had an incident a while back when we went to a friend's party. Our friends had catered specifically for Alexandra and we knew most people at the party, so were happy to let her wander- confident that we had taught her to ask before she ate anything. Half way through the event my friend came running towards me with a tearful Alex in one hand and a chocolate brownie in the other. He had seen her eating what he thought was an off limits snack and had swooped in to prevent her from eating more. Alex was very indignant and insistent that she was allowed to eat the cake as she had asked. As it turns out, she had asked an adult if it was ok for her to have the cake and that person had said of course she could (after all it was a party!), unfortunately, they weren't aware of her condition...... Yep, more cleaning up and a reflection on what we could have done differently. We can't watch Alex every minute of the day, and she needs a bit of independence when we're in a safe place, but we want to do every thing we can to protect her from a gluten reaction.  Luckily, Coeliac UK provided a solution. They do wrist bands for children which highlight the fact the they're coeliacs (find them here: http://www.coeliac.org.uk/shop/i-am-a-coeliac-childrens-wristband ) . Now Alex wears her wrist band for every party or social occasion where there may be people who don't know her background, and, so far, we haven't had a repeat.