Monday, 10 March 2014

Time flies when you're having fun!

Well, I can't believe it's exactly a year today since I started writing this blog. My posts started very enthusiastically and expeditiously and have gradually dwindled and spread out a little as I've gotten on (and off and on again) my soapbox and vented my spleen about the various niggles and challenges I have had. However, I think that's the case with most blogs, unless the authors get into the commercial realms and although the frequency of posts has reduced, my enthusiasm for the topic and my love of writing about it has certainly not.

My initial aim in starting the blog was to share my experience as a mum with a child with Coeliac disease, in the hope that it might be of some use or interest to other parents in similar circumstances. What I have found is that, through writing, I have gained a way to clarify and get some resolve around the events and situations that we have been faced with. I regularly encourage my clients at work to journal about their experiences to gain catharsis, and can now honestly say that I have first hand experience of this benefit of putting pen to paper (well, finger to keyboard at least). I have also had the privilege of having other parents and people with Coeliacs (and other autoimmune illnesses, some of which I was completely ignorant about) share their stories with me and have learnt a multitude through their experience. Through wider exploration of the web and exposure gained from my blog I have developed a little more insight into 'the gluten-free community' and the support available, from both commercial food companies and charitable organisations who work tirelessly to raise awareness for those who have to lead a gluten-free existence.

The modern day methods of communication being as incredible as they are, there is a little button that you can press when you write a blog that tells you who is looking at your blog, how they find it etc. This has been a revelation and a real source of encouragement, in that I had expected my family and friends to have a little nosey at the blog out of politeness and support, but had not expected much interest beyond that. The little button tells me (although it may be lying to stroke my ego), that people from all over the world have looked at the blog, including Russia, Australia, Germany, Peru and the Ukraine among other countries. How exciting to think that the world, although huge, can be brought closer through writing.

If you enjoy my musings, don't worry, this is not an epitaph, but I do want to take the opportunity to say thank you to everyone who has supported and encouraged me in my first year of writing and to anyone who has taken the time to read through the ramblings and rants.
(Oh, and thank you of course to my gorgeous girl Alexandra, without whom I would probably roll my eyes when someone is being 'awkward' in a restaurant, think that 'gluten-free' was another fad diet, and without whom my life would not be so complete- if a little challenging at times!)



Tuesday, 18 February 2014

The one with the green bitty bits!

The scene: Me washing up in the kitchen, Alexandra playing with dolls at the table.

Me: (breezily so as not to influence the answer) What do you think of this new bread Alex?
Alexandra: (frowning slightly) What new bread do you mean Mummy? The one with the green bitty bits?
Me: (perplexed)  Err- I wouldn't call them green, but yes, the one with bits in it...
Alexandra: (brightly) It's delicious, I like that one, can we get it again?
Me (opening mouth to speak):
Alexandra: exit left out of the kitchen humming 'Build Me Up Buttercup' without waiting for a response.

We have deep meaningful conversations, my daughter and I!


So (without Alex's insightful input)  how does DS Wholesome Seeded Loaf square up to its rivals?

The positives-

  • Packaging is robust, meaning loaf isn't falling apart before we even begin sandwich building.
  • Texture is springy and butterable (yes, it's a word!).
  • Stays fresh for a few days when opened (and can be eaten fresh- doesn't need to be heated to 'revive' it).
  • Tastes good (both girls and myself gave it a go- the 'bitty bits' make it nice and moist!)
  • Toasts well.
The (slightly) less positives-
  • It ain't cheap (£2.50 for 300g)- but then again what GF food is?!
  • Holes were smaller than most competitors, but still they poked their little absent selves through-grrr.
  • Slices were small- I have never yet seen 'normal' sized GF sliced loafs- it seems gluten has an amazing amplifying quality that makes loaves made using wheat flour increase by 1/3 to dwarf their GF cousins. 
Over all, this is a pretty good competitor in the G-F bread stakes. Definitely on my 'buy when I find it' list. (Available in most good supermarkets. If they're big. Hopefully!)

Wednesday, 22 January 2014

Gluten-free NYC

I hadn't expected any difficulties in eating out gluten-free in New York- they cater for all kinds of choices, diets, fads etc, right? Not quite!

We started our week long break in Hudson where we stayed with my sister. She had bought in lots of G-F staples (pasta, pizza etc) and some yummy treats that we don't usually get (frozen G-F breakfast waffles anyone?-a company called Van's make them, although US only I think.)

The first restaurant we ate out at in Hudson was a diner called American Glory- how thrilling to find a place that highlights items on the menu that are NOT gluten-free, with everything else being fine for Coeliacs. If this was what a small place in Hudson had to offer, we had high hopes for Manhattan.

Next stop, Times Square, with 2 ravenous and slightly jet-lagged kids (not to mention adults). The first place we found to eat in was O'Lunney's Irish Pub ( I know, I know, we go all the way to America and end up in an Irish Pub, but we were hungry!!). Again, we were thrilled when they said they had a G-F menu. Alex picked a curry and we sighed with relief that we had been able to find somewhere that could cater for her so easily. After lunch we marched the little ladies down 5th Avenue. Alex desperately wanted to go back to the hotel as she was dying to try on the Rapunzel wedding dress she had gotten at the massive Disney Store, so we ignored her complaints about feeling tired/ sick/ wanting to go home. Well, we had egg on our face (and puke on our shoes), when poor Alex then vomited all over the FAO Schwartz 'restroom' (yep, picked up the American lingo!), and we realised that her gluten-free curry must not have been as gluten-free as we were led to believe. As I've explained in previous posts, Alex continues to vomit for a while when she's had gluten, however, after emptying her stomach in the toy shop, she was really keen to continue our adventure, which was a princess carriage ride in Central Park. Without going into too much detail about what happened next- beware the blankets on those carriages- you never know what's been on them!!!

The following evening we spent quite a long time wandering around the area we were staying in (upper west side), looking for a restaurant that would cater for Alex, however very few were able to help.We tried a few places who all told us they couldn't guarantee anything on their menu. We had an amusing communication issue in one place, where the greeter pronounced 'fruit' in the same way we pronounced 'food', so she was trying to convince us that 'all food is gluten-free', and must have been wondering why we wanted 'any fruit that didn't contain gluten' for our 4 year old at 8 o'clock at night!

If only we had made the miraculous discovery of G-Free NYC earlier in our trip. This is a really cute little shop on West 85th Street (between Columbus and CPW). They have every type of G-F product you can imagine, fresh, dried and frozen. Alex made a young friend in there who also had Coeliac's and loves princesses (why don't adults start conversations with 'so what's your favourite princess'- life would be brighter?!). And even better, the fabulously helpful owner had a list of local restaurants that catered well for Coeliac's. For anyone who has to eat G-F and will be spending time in NY- a visit to this gluten-free hub of knowledge is a must.

As a result of their suggestions, Alex was able to experience a fab stack of G-F American pancakes the next morning at Cafe 82,  a place that we would have walked past without a second glance, had we not been aware of their G-F menu. Not only do they do lots of G-F options, they did us a sandwich to take away, so we were set up for the day.

So over all, we survived our American adventure, although not as easily as we had expected. A bit more internet research prior to the trip rather than during the trip next time I think will mean we will spend less time wandering around looking for food and more time sitting eating it!

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!