Tuesday, 29 November 2011

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.

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

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!

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)

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!

Tuesday, 15 November 2011

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.

Wednesday, 9 November 2011

Looking back....

Part of the recovery, not just for Alex, but for us as a family involved looking back at his life to see if there were any clues to how ill he would become, and to see if we could identify when it all started.

When he was in the last year of infants (I think that would have been around 6 years old), all of a sudden his behaviour became very erratic.  He would be hyperactive, almost bouncing off the ceilings, then angry and violent (often towards me as a 'safe' person'), then suicidally depressed.  This went on for months to the point where I'd done everything I could but nothing seemed to help, and I couldn't cope.  I finally admitted defeat (it felt), and went to seek help from the GP.  Of course, describing the individual incidents didn't make much of an impression, and whenever Alex had been to the Drs he had always been pretty well behaved, but did agree to refer us to a child psychologist even though he didn't think it was necessary.  I saw the psychologist a few times, both alone and with Alex.  She helped me analyse everything, and find ways of dealing with his behaviour and working out what the triggers were.  It became apparent that a lot of his mood swings were caused by blood sugar fluctuations, so I spoke to the school and made sure that he took a cereal bar to eat at ,id-morning break, and always took something for him to eat as soon as school finished.  The hyperactivity and violence quickly became control able.  But the depression was a frequent visitor. 

Depression is a hard subject for most adults to discuss and deal with, but when it involves young children, it is almost impossible.  How do you tell someone that your child regularly tells you they want to die, or wish they were dead?  And not just while they're arguing with you, when they're in bed crying at night because they are so deeply unhappy although they don't know why.  Who do you turn to?  In my case, I struggled through, trying to deal with it as best I could, all the while blaming myself.  Did he inherit it from me?  Was I causing it somehow?  Why couldn't I make my child happy?  It's a terrible burden to carry.

When he started in the juniors he started to complain of stomach pains, mostly in the mornings when he got to school.  The teachers and I thought it was because he didn't want to be at school, and the unhappiness was making him have the pains.  I repeatedly approached the teachers for support.  I could see he was struggling with the work, but it hadn't been picked up on.  I asked for him to be tested for dyslexia which runs in the family.  Just as we started to get somewhere we would get fobbed of.  It seemed that because he was quiet, well behaved and not totally failing at school, he was falling through the net.  In year 4 the teacher suggested he have his eyes tested to rule out sight problems.  It turned out that he did need glasses and they seemed to help a little with his confidence.  The teacher he had that year was great.  She could see the potential in him and that he just needed help to raise his confidence in himself.  He started to make progress again, and things seemed to be going well.  He still complained of the stomach pains some mornings, but he seemed happier.

Then came the following school year when he seemed to be constantly ill.  Tonsillitis at the beginning of the school year, a nasty bout of flu before Christmas, tonsillitis again in February followed by the abdominal pains which were so awful he felt like he was dying, and lay on the sofa groaning for a month before finally several months later being diagnosed with coeliac disease and recovering so well it was like a butterfly had finally been able to stretch its wings which had been crushed in a chrysalis of pain.  Yes, strange imagery I know, but its very late and I'm rather tired!

Looking at all of this, it seem to me that the coeilac disease was probably triggered during that last year of infant school when his behaviour deteriorated so badly.  Everything makes sense given the context we now have.  He still has times of depression, but they are nowhere near as severe.  He does have stomach pains, but they don't last long and are not as bad.  The sever constipation he had had for as long as we could remember has pretty much disappeared!  Now the only reason he's taking up the bathroom for an hour at a time is because he's reading a book and lost track of time.

What a difference these few months has made.

Now we wait to see the differences in Ruth.  Her symptoms were thought to have been caused by puberty (stomach pains, irritability, tiredness) until we got her blood test results.  Of course, there's no guarantee that we will see a difference, but I'd like to think she will find school easier again.  After a lifetime of swanning through school at the top of the class, this past 6 months she has found it much harder to concentrate.

Tuesday, 8 November 2011

Ummmm, 2 months later....

I'm being so bad keeping this updated! Sorry, I'll try to do better :)

Firstly I want to say a huge THANK YOU to all my lovely Twitter friends who I've got to know over the past few months. Cannot express how much your support and friendship has meant to me.

Right, so what's happened in the past 2 months? Well, quite a lot really. Alex is doing really well. Everyone who sees him now who knew him before comments on how he's like a different person. So full of life, funny and he eats! He had always been an exceptionally fussy eater, and we never knew that it was because food hurt him. Now he is trying new things, and discovering he likes things. Rather a novelty for me still.

Ruth finally had her biopsy on 31st October. After leaving home around 9.30am we reached Birmingham Children's Hospital at 11.30am. We had to sit on flip-up chairs in the waiting area of the Medical Day Care ward until her bed was finally ready at around 2.30. She was very lucky though, as she got a side room to herself. After checks by multiple Drs and nurses, talks with the anaesthetist and surgeon she was given the go-ahead for the procedure. Then more waiting around until the porter came to take her to theatre at 4.20. A lightening quick change into a hospital gown and it was down to theatre. She was very brave and agreed to have a cannula in her hand even though she is scared of needles. She was so brave, even though she was afraid she wouldn't wake up from the anaesthetic, and was a little teary. At 4.30 John and I went back to her room to wait to hear how it had gone. At just after 5 the surgeon came to tell us all had gone well, and that although from what they'd seen it looked like it was coeliac disease, that we should wait until the biopsy report came to know for sure. 10 minutes later we were able to meet her in the recovery room, but poor Ruth wasn't feeling at all well. Having been nil by mouth for many hours by then, coupled with the anaesthetic had left her with a terrible headache and she was so distressed it was heartbreaking. The medical staff were clearly worried that she was so upset - the team leader was stroking her forehead, just like I do. Little things like that make a difference, and show how much they care. The ward closed at 6pm, so once Ruth was back there (5.15) they were hurrying her to eat, drink and get dressed so she could go home. Otherwise she'd have to be admitted to another ward and stay overnight. Of course all she wanted to do was sleep, so she was even more distressed. Eventually she managed to drink some water, eat some apple slices and let me dress her. She stood on legs as wobbly as Bambi's and held our arms as we left the ward, only to get stuck in rush hour traffic in the centre of Birmingham at 6pm! We got home at 7.45 and she was starving, ate solidly for half an hour before falling asleep. Fortunately the school had booked her the next day off school as well, so she had a chance to recover a bit.

So now its another waiting game for the biopsy report to arrive. Hopefully it won't be too long.

I'm having an intersting time at the moment with my own symptoms but I'll save that for another post I think :)