The Genetics Factor

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

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

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

I know that this is probably (but not necessarily) the end of the story. The negative test means that our bodies are not producing anti-bodies to gluten at the moment, but I have been told that there is a slim chance that Katya may go on and develop it at some point in the future (although it is unlikely). Hence the slight worry when our toddler throws tantrums. As I said, my head knows it's silly, but I'm still just a little bit vigilant.

Has anyone else has more than one person with Coeliac's in the family? At what stage did the illness get picked up? Has anyone had a  sibling that has been diagnosed further down the line?

Jen

A Coeliac abroad.

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

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

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

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

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

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

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

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

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

Jen

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

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

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

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

Also in the menu were:

• Sandwiches made from shop bought g-f bread.
• Rainbows of fruit.
• Chocolate rice crispy cakes made from Nature's Path Gluten-free Crispy Rice decorated with Asda chocolate beans.
• Rainbow cupcakes, using the Dove's Farm recipe I've mentioned previously, lemon butter icing and Haribo Rainbow Twists.
• Pom-bear crisps (which are gluten free)

Alex was thrilled that she could have anything without asking and all of her friends were able to have everything that she had too!

Recipe for Chocolate Orange Birthday Cake

150g margarine

450g caster sugar

3 eggs

2 teasp orange essence

60g cocoa powder & enough hot water to make into a paste

200g gluten-free self-raising flour

200g ground almonds

1 1/2 teasp bicarbinate of soda

1 1/2 teasp xanthan gum

large pinch salt

340ml milk

1 1/2 tblsp white wine vinegar.

Method

Cream the marg and caster sugar, beat in the eggs and orange essence and cocoa paste. 

Mix the other dry ingredients together in a separate bowl.

Mix the milk and vinegar in a jug.

Alternately fold in the the dry ingredients and milk into the butter mixture a little at a time. 

Pour into LARGE greased tin.

Bake at 160 degrees for about 50 mins until knife comes out clean.

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

Jen

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

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

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

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

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

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

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

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

Jen