Too bad that there's not more like Too Good!

We were recently saved from 'the worst day ever' by the lovely folk at 'Too Good to be Gluten Free'.

We had dear old friends staying for the weekend and despite them having been in Nottingham numerous times before, we had never made it to Nottingham Castle with them. We had decided that this was to be the time that we would go to see the historic monument, however, Nottingham City Council had given over the venue to a Great Food and Drink Festival for the weekend.

Undeterred, we were looking forward to having a stroll round the stalls before tackling the tourist trail. There were cooking demonstrations by the obligatory TV chefs, a nice kids play and crafts section, live music and numerous lovely artisan food and drinks stalls...... of which a grand total of 1 was dedicated to gluten-free food.

As we wandered around, our gluten free kid was getting more and more upset as there was nothing that she could try. (She could have had the amazing passion fruit vodka from I Heart Vodka had she been of drinking age, but she's not, so I had to have her sample. And a bottle- just to make sure it really was that good!). To add insult to injury Alex got a free balloon and within minutes it had burst. In her best drama queen style she threw her stick with the flaccid red latex hanging off the end to the ground and wailed at the top of her voice 'this really is the worst day ever!!'

Fast forward to a very forlorn walk towards the exit when we came across the No G camper van, gleaming in a ray of sunshine! Too Good to be Gluten Free offer pies, quiches and tarts that are genuinely good. The flakey, buttery pastry and rich tasty steak and ale filling was just what our hangry diva needed, and for us non-coeliacs, we couldn't tell that it was gluten-free. To brighten our day even more, the charming people from No G offered us some of their other flavours to take home and try. Chicken, bacon and leek, fish and potato and vegetable were all as good as each other, heating up well in the

oven. When we asked where No G pies are available, we were told Sainsbury's or Ocado. They had been available in Asda, but unfortunately, Asda had been pushing for too much of a reduction to make it viable for the company to continue to supply them. (SHAME on you gigantic supermarket chain- we want more options for good quality gluten free food, not less.)

In the end, it was a lovely day and we even got to meet Robin Hood! It would be so much lovelier though, if the food festival organisers could do something to encourage/ facilitate more stalls with options for people with dietary requirements. Unless I knew for definite that there would be stalls that Alex could enjoy, I won't be rushing back to another food fair with her in the foreseeable future.

Can she be gluten-free just like me?

'I wish my kid was sick', said no-one ever (unless they're very very sick themselves, but let's not go there). However, in the run up to our third daughter being born recently, Alexandra mentioned a few times that she hoped her new sister would be 'gluten-free'. Although I don't share her hopes for Zofia (mine are more along the lines of 'I hope she won't turn out to be a psychopath','I hope she'll make a better fist of using Twitter than I have', 'I hope she'll chose me a good nursing home in my dotage')  I can completely understand where she's coming from.

Alexandra is really good about her Coeliac disease. It's all she's really known and she is well aware of the outcome if she eats gluten. She usually just accepts that she can't have what other people have without complaint. However, recently she has been more aware of her difference and the fact that she can't just join in when people are eating.

In fairness, we, and those involved in Alex's life (including school) try to ensure that her food and treats are comparable to what her peers are having. I usually have some sweets or a muffin in my bag in case we are involved in a spontaneous treat or surprise which involved cakes or biscuits and we always bring a 'picnic' to parties and events. However, I still get caught off guard at times and have to promise Alex that I'll get her 'something nice' later, as she sits watching other children munch on biscuits or crisps. It's awful. She accepts it quietly with sagging shoulders and lowered head. Occasionally she gets upset- 'it's just not fair mummy' and I have to agree- it's not.

Sometimes it's the small things that cause tears- like Katya having a piece of my toast. I will make toast for Alex using her bread and butter, but that's not really what she wants. It's sharing some of mine, being part of things, joining in without standing out that she craves.

So, rather than genuinely hoping that Zofia has a serious auto-immune illness, I think Alex really just wants someone to share what she goes through.  As she gets older I think she will realise that she is not as alone as she thinks. There are a large number of people with undiagnosed Coeliac disease, and this week is Coeliac awareness week. The Coeliac society is encouraging people to become aware of the symptoms of the disease and to push for proper testing, as many people are misdiagnosed with other conditions such as IBS. Visit the website coeliac.org.uk for more info on symptoms and diagnosis.

By the way, although I don't long for Zofia to have Coeliacs, I know there's a good chance she will as it's genetic, and it won't be the end of the world if she does- at least she'll have her big sister for company!

Guilt-free dining please

I got caught by a wave of guilt the other day. Alex was in school and I was out with Katya, who doesn't have Coeliacs. I'd promised her a treat and was starting to go through in my head the places where we could go, when I realised we could go anywhere! We could walk into any cafe we wanted and have anything on the menu with out checking every ingredient and cooking method. We wouldn't have to walk out again because they couldn't cater for us. We didn't have to explain anything to anyone. It felt liberating and a little bit naughty, like playing hookie from school. For about 2 minutes. And then I felt guilty because I was glad Alex wasn't with us.

However, it made me reflect on the recent (very limited) news coverage of Prue Leith, Albert Roux and other leading chefs complaining because due to new EU legislation on allergen labelling they will be forced to identify whether their dishes contain any of 14 specific allergens, including gluten. Apparently it will be a faff for them and will curb their spontaneity if they have to list on the menu whether the dishes contain these ingredients- they feel it should be up to the customer to find out, not up to them to make it explicit. Seriously guys?! It's a faff to explain to everyone, from the greeter to the varied waiting staff that your daughter has Coeliacs, and to wait for 20 minutes for them to check whether she can have anything and to realise that there's only one thing she can have anyway (jacket potato and beans) and to double check every item they bring to the table because there's a suspicious looking garnish on the plate. I suspect many people with Coeliacs stick to a few restaurants they are comfortable with and they know can cater for them safely. If you did highlight your dishes that contained gluten, you could make your life, your waiting staff's, and my life that little bit easier, and increase your client base. (Heck you could charge 3 times the price for GF dishes- all the food manufacturers do!)

So regardless of thoughts on the EU, referenda, elections etc, this is one piece of legislation that I hope gets enforced and we can eat out spontaneously with any/all of our children, without feeling guilty!

Out of the mouths of babes!

My husband was proof reading this blog recently and Alexandra wanted to know what he was looking at. I explained that I sometimes wrote about her being a Coeliac so that other people would know what it's like.
'Well they could always ask me' was her very practical response. Great idea, I thought, get the five year old writing, she'll probably have a much more interesting take on things than I do! So I asked Alex what she would like to tell people about having Coeliac disease --and this is what she wanted people to know:

• It's good being gluten free because you get to be special.
• You can play with your friends still, even though you can't have the food that they have.
• You can make food that is gluten free for yourself when you're older.
•  If your grandma or grandad don't know you can tell them what's gluten free and what you can have. 
• You can't have the same pudding that your friends have even though you might like to try it.
• When I have gluten I get sick and I go home before my friends if I'm at school. 
• It feels bad in my tummy and just in my heart. (?!)
• A good nights sleep helps me feel better because ill people need a good nights sleep. 
• When I go to the doctor they give me a blood test, but when I was little I was sick and I had to go to the hospital but I wasn't even five then, I was one. Was it 10 years ago mummy? (Obviously need to work on the maths a bit!)
• That's it 'cause that's a lot of words isn't it?

• Oh wait, can you just tell people even though God's with me I can still be poorly, so that's ok.

So there you have it, all you need to know about being a Coeliac from a five year old's perspective covered!

Plus a drawing of her being sick- nice!

Udi ya think you are? (Watch out the Yanks are coming!)

My facebook page has lots of irritating 'recommended' pages that pop up on my feed. Some are quite random (instant weight loss, cheap beauty products, reduce your wrinkles.....wait a minute- is Facebook trying to tell me something?!), but others are obviously linked to the things I post about. So, I guess because I post about gluten-free stuff and like some of the Coeliac pages, over the past few months I have noticed that ads for 'Udi's Gluten Free' kept popping up. Although it looked like a nice, friendly faced gluten-free company, I just assumed it was American and therefore wouldn't be available here in the UK, and so ignored the pop-ups.

More fool me- 'tinternet is smarter than that and Mark Zuckerberg sure knows how to target marketing. Turns out that Udi's have crossed the big pond and are now available right here in our UK supermarkets. Not only that, but the lovely folk at Udi's agreed to send me some products to test. As identified in a previous post, we were impressed with the range of GF products on the shelves in the US, so waited with excitement to see what treats Udi's would conjure up. And I have to say, we were not disappointed.

Please be clear, I am not under any obligation to write good things about Udi's, but I was genuinely impressed.

First of all we tried their Cinnamon and Raisin Bagels. I was  really pleased to find decent looking bagels, as previously Alex had wanted to write to 'Mr Sainsbury' to ask him to make some as she was desperate to try them. At one point I had gotten excited by one of the GF facebook pages who posted a picture of some mini bagels and suggested that soaking them in water overnight would grow them into gluten free bagels. I was genuinely about to post to ask where I could get them, when I read the previous comment which pointed out that it was April Fool's Day and it was a bag of Cheerios! Anyhow, GF bagels- exciting! And they did not disappoint. Good texture, good taste, normal size..... I figured too good to be true and either a) I would not be able to find them in the shops or b) they would be extortionate. However, on my very next trip to Asda, there they were on the shelf, and pretty much on a par with 'normal' branded bagels pricewise.  Wow- happy days!! A great option for picnics, lunchboxes etc, these are definitely on my shopping list from now on.

The pack of 'Bagel Chips' (a weird cross between a bagel, a crisp and a cracker, but sweet) did not go down so well in the household as a whole, although Alexandra herself enjoyed them. Because she was the only one who would eat them, and it's a good sized box, I probably wouldn't get these again unless we had a group of kids (and/ or adults) who would nibble them.

We did receive lots of other goodies, of which I will go into in more detail in the future, but I did want to pick up on one product that I hadn't come across before- gluten-free breakfast bars. The kids don't eat breakfast bars, I try to give them 'proper' cereal, but I must admit I will often grab a cereal bar for myself on the way to work, or en route to school pick-up if I haven't had a chance for a proper lunch. I know it's not good practice, but it's quick and easy, and I can imagine that not having the option to grab a hasty tasty breakfast bar as an adult Coeliac would be a bit of a pain (admittedly probably not the worst thing about having to eat gluten-free <hmm beer>, but all these little things add up).  This 'soft n' chewy' strawberry bar was not too sweet and reminded me a bit of  a fig roll. Again, top marks Udi's. I'm impressed.

Although I am fully supportive of any home grown gluten-free talent, I have to admit, the American's in this company have nailed it- decent products, reasonably priced and readily available. Can't wait to try the rest of their range!

Are Pirates gluten-free? Yes they ARRR!!

Since about Christmas time Alexandra has been telling us 'I've invited <insert random name> to my party'. We have been repeatedly reminding Alex that said party has not been discussed or agreed and inviting everybody in her class and telling them the date of her birthday does not mean that it will happen.  Ha! We were wrong. It turns out you can grind your parents down (well these parents anyway) and make your wish come true if you talk about it long enough and hard enough and with enough conviction.

And so it was that I found myself in Pirates Play Centre enquiring about kids parties. I'd always said I would never have a party in a play centre- only home organised traditional fun for my children. That was in my idealistic pre-actuallyhavingkids days. Now the idea of letting someone else do all the organising and cleaning up is somewhat appealing. (Although I do love doing home-made too- depending on other demands and time allowances).

When I informed the organiser at Pirates that the birthday girl has Coeliac's and would need gluten-free food, without missing a beat he said, no problem, would you like the whole party to be gluten-free in that case? 'Yee-ess', I said hesitantly, expecting a surcharge of a ridiculous amount per child. However, fabulously, there was no extra cost at all.  On the day, the party host discussed all of the food and preparation methods with me. The kids had sandwiches, breadsticks and veg sticks (with dip), crisps, fruit, smiley potato faces, pink wafers, and jelly and ice cream. All gluten-free. With no hassle. Or drama. Big smile!
For anyone in the Nottingham area, I would definitely recommend Pirates Play Centre for a gluten-free party.

I did do the cake myself, and I have to say, it was one of the best tasting cakes I've done in a while. I found the recipe on the 'all recipes' website  here and just added some Xanthan gum when my first attempt fell apart. The icing was ready roll from Sainsbury's with the top bit bought from 'caketoppersbynikki2012' on ebay, after her immediate response to my email, confirming that all the ingredients and her production methods were gluten-free. Again, an easier than expected transaction with someone who is obviously used to dealing with dietary requirements. Pleasingly, nearly everyone who ate the cake expressed surprise that it was gluten-free. I did freeze some, and it defrosted well, although I don't know why I bothered freezing it as I took it out again pretty much straight away as it was so morish!

In any case, a very different gluten-free party to last years, but a very happy 5 year old and Mummy.

(And seeing as Alex is starting to read- if you ever read this sweetheart, the statement in the first paragraph about grinding your parents down and having your wish come true does NOT apply to Disneyland Paris. For now!)

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!)

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!)

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!

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!!

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

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!!

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.

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!