When being polite makes you ill....

This is Ruth.  Sometimes she can be a bit of a moody teenager - but then what 13 year old isn't?  But she is a kind, thoughtful and polite girl, who always tries to consider the feelings of others.

Last year when she was 12, she was diagnosed with Coeliac Disease.  This was hard for her, but we were already used to the diet as Alex had been diagnosed earlier in the year and had been gluten-free for 3 months at that point, so it wasn't as much of an upheaval as it could have been.

Ruth is very eloquent, and usually very self-confident.  She often explains to her friends about Coeliac Disease, and is able to take responsibility for eating safely when she is out with friends, or invited to a party.

But recently there have been a couple of incidents where her politeness and her eagerness not to offend have led to her getting glutened.

In the first incident, her Science teacher knew she was Coeliac, and when she was giving out chocolate after using it in a demonstration, she got Ruth to check the packet to make sure it was safe.  The chocolate was fine, but the teacher cut up chocolate containing pieces of biscuit with the knife which she then used to cut up the gluten-free chocolate.  After the teacher had gone to the effort of checking the chocolate was safe for Ruth to eat, Ruth didn't want to offend her by not eating it.  So even though she knew that there was a risk of her being glutened, she ate the chocolate.  Fortunately it was only a small amount, and she doesn't react very strongly, but it did lead to a blocked toilet.  But any glutening incident is serious.  We talked about how important it is for her to put her health first and that if someone is offended by her telling them she's sorry she can't eat something because it would make her ill, then they probably aren't worth worrying about.

However, 2 weeks later it is the end of term and her form have a party as their teacher is leaving to work abroad.  There are 2 other Coeliacs in Ruth's form, and one of them brought in a gluten-free cake she had made for the 3 of them to share.  There was only one knife for them to use, and it was used to cut the regular gluten-filled cake first, before the gluten-free cake.  Ruth knew it could make her ill, but after her friend had gone to the effort of making the cake, she didn't want to upset her by not eating it.  So she had a slice of the cake (apparently it was very nice).  I was very surprised when she told me what had happened, as I would have thought that the other Coeliacs (both who were diagnosed when they were quite little so have been used to living with it for years) would know it wasn't ok to use the same knife.  Maybe Ruth felt that since they had been diagnosed a long time before her, she could follow their lead, as they would know whether it was ok.  By the time she got home she was grumpy and her stomach was gurgling.  This morning we had a blocked toilet again, this time so badly we had to call out the emergency plumber.

But obviously more worryingly, this is the 2nd time she has been glutened in a month.  Both times she knew it would probably happen, but ate the food anyway as she was too worried about hurting someone's feelings.  Before she was diagnosed, she was fairly asymptomatic so I'm not sure if she's convinced herself that she isn't doing herself any real damage.  She is very intelligent (she is starting Maths and 3 Science GCSEs in September, a year early), so it's not that she doesn't understand the mechanics of Coeliac Disease, I think that maybe she is in denial?

I'm hoping that this time the message has gone in and she really will try to put her health first.

Have any of you had a similar experience?  How do you deal with these kind of situations?  Is it something you just learn to deal with over time?

Any advice or help would be greatly appreciated :)

A Year in Review

 This year has been tough in so many ways.  Getting through it has been somewhat of a triumph.  I'm hoping and praying for an easier year ahead.  I took this photo yesterday to symbolise the hope I have.  Something about a rose bud opening its petals in an almost freezing garden in December spoke to me.

Yesterday it was a year since my Grandma died.  She had been very ill for a long time, and although it was a relief that she was no longer suffering, it was heartbreaking for all of us.  For Ruth and Alex, it was the first time they had lost someone close to them.

This photo of my Grandma and I was taken by my dear friend and wedding photographer Kirsty Wiseman at my wedding in May 2008.  It is one of the most precious to me of all the amazing photos she took that day. 

Then in February this year Alex got sick.  In agonising pain for months, he was convinced he was dying - had me worried I can tell you!  In May I was told I had degenerative arthritis in my wrist which would continue to get worse and was already causing a lot of pain and difficulty in doing things.  However this was eclipsed the following week when we were told that Alex's blood test had been positive for Coeliac Disease. Ruth was screened as a result, and in July we were told her blood test was positive too. A biopsy and endoscopy in August followed for Alex who was immediately told to start a gluten free diet as the damage to his small intestine was so extensive.  In October Ruth had her biopsy and endoscopy and was instructed to start a gluten free diet once the results came back.  Fortunately it was caught much earlier in Ruth, and the damage wasn't anywhere near as bad as with Alex, and she had few symptoms.

It has taken a long time to come to terms with everything, and to get used to the new diet.  But finally I think we're getting there.  I'm feeling positive for the first time in a long time.  Seeing the children doing so well is inspiring.

Just need to get to the bottom of these abdominal pains I'm having, but hoping CT scan on 21st will shed some light on the situation.  Hoping for positive news there too :)

Quinoa Supergreen Salad

   In my quest to find new gluten free things to feed the family, I came across several discussions of quinoa (keen-wa).  I didn't even know how to pronounce it at first, never mind what to do with it!  I Googled recipes, and came across this one on the BBC Good Food site Quinoa Supergreen Salad.  A bit of tinkering, and I made it suit us.  The children tried it, but weren't keen on the avacado.  Ruth loved the soya beans though, and eats them as a side dish to other meals now.  John and I really enjoyed it though, and this dish full (above), was my dinner that day - and I managed almost the whole lot, which is pretty good for me at the moment.

Ingredients
50g Quinoa
4 spring onions, finely chopped
1 small avocade, diced
1 lemon, juiced
100g frozen soya beans (edamame)
100g frozen peas
1/2 small bunch parsley, chopped
1/4 cucumber, diced
Olive oil
Salt to season

Method
1. Cook the quinoa following the pack instructions, drain, rinse under cold water then drain completely.
2. Add the spring onions, avacado and lemon juice to a bowl and season with salt.
3. Blanch the soya beans and peas for 2 mins, drain and rinse, then add to the bowl.
4. Add the quinoa, cucumber and parsley to the bowl, pour over a few tablespoons of olive oil, and toss everything together.

Can be served as a side salad, or even a light meal.  Tasty, and packed with nutrients in all those wonderful superfoods.

Choc Chip Cupcakes

   When Alex was first diagnosed with Coeliac Disease, it took a few weeks to find proper food that he'd eat.  One of the first things he enjoyed eating were these choc chip cupcakes - in fact he didn't even realise they were gluten free the first few times he ate them.  They have been a bit of a God send to be honest - they are good for lunch boxes, supper, and any other time he feels he feels a bit peckish.  The best things is they are quick, cheap and easy to make, and because I know everything that has gone into them, I know they're safe and reasonably healthy.  The only problem with them is how fast they disappear!

Ingredients
3oz caster sugar
3oz margarine/butter
3oz self-raising flour (I use Dove Gluten and Wheat Free Self-Raising Flour)
1 large egg

2oz milk chocolate chips (check to make sure they're gluten free)

Method 
Preheat oven to 180 degrees C (170 degrees C fan oven).  Put 12 cupcake cases into a cupcake tray.
1. Cream together the sugar and margarine.
2. Break in the egg and mix with a fork until fully incorporated.
3. Sift in flour and fold into the mixture.
4. Stir in the chocolate chips.
5. Spoon mixture equally between the cupcake cases, and bake in the centre of the oven for approximately 15 mins, until tops spring back when lightly depressed, and cocktail sticks inserted into middles come out clean.  Allow to cool for a few minutes before eating.

   The cakes keep for a few days in an airtight container, but in our experience they don't last long, as they're gobbled up!

Ruth's diagnosis & a Glutafin hamper arrives

On 31st October Ruth had her endoscopy and biopsy at Birmingham Children's hospital, and yesterday we got the report, confirming that she does have Coeliac Disease as suspected.  So this morning she commenced her totally gluten free diet which she will remain on for life.  It was interesting to see Alex and Ruth's biopsy reports.  We were expecting them to differ as Ruth's symptoms were so much less severe than Alex's.  The main difference was that Alex had villous atrophy and duodenal ulcers, whereas Ruth had partial to sub-total villous blunting.  Hopefully because it was caught so much sooner in Ruth, she will recover really quickly.

She is in the process of setting up her own blog, which I'll link from here.  As an almost-teenager, her experiences and feeling will be very different to a lot of people's.  She is at that age where she likes to go out shopping or to the cinema with her friends.  This means she has a lot more responsibility for her own diet.  As Alex is still quite young, the responsibility is all with me.  Fortunately she really enjoys cooking, so we'll have fun discovering recipes she loves together.

In other news, a lovely hamper of samples arrived from Glutafin last week.  Full sizes of their White Fresh Loaf, Fibre Loaf, Digestive Biscuits, Crackers, White Mix, Fibre Mix and Fibre Rolls.

So far he has eaten all the White Fresh Bread - it was really yummy apparently.  It looked and smelt like 'real' bread, although he says that he can't remember what that tasted like now after 3 months of the gluten free diet.  The digestives were used to make a gluten free chocolate biscuit cake which went down well with the whole family.

I'll be updating the other pages of the blog with links and more info soon but haven't been well with a UTI and kidney pain so am having to take it a bit easy at the moment.