Noah’s Annual Coeliac Check-up

It that time of year again – Noah’s annual check up. For a boy of 6 it has fastly become his worst time of year. By association Hospital = injections = pain. But with some bribery we got through it.

This year University Hospital of North Staffordshire  – who have been utterly brilliant since and from Noah’s diagnosis – sent us a note to book in for a blood test.  The blood test was a week before the actual appointment.  Meaning that when the appointment came round, we could discuss the results and next steps.  Previously we had the blood test and appointment on the same day, we would then have Noah’s result by post a week or more later.  This new way made way more sense.

It also made for 2 trips to the Hospital – an easy one and a not so easy one.  Two trips that we needed to prepare Noah for, trips that he is becoming to understand and also necessary. But still the questions – Will I need to go every year? When will I be normal free? Why cant I be like my friend?  Not easy ones to answer, but at least now I can assure him with the fact that I now have to have an annual blood test.  I have recently been diagnosed with an under active thyroid.  It has given him some comfort, daddy has to have some pain too.

The blood test day came and went, we tried to make nothing of it (and I was 3 packets of Pokémon cards light) and almost passed without too much bother.  And then the wait…

Although we know we are doing everything right, that we are providing a gluten free household (it’s so much easier for us all to eat with Noah, rather than provide different meals) there is still that nervous caution.  We can’t control the school meals, but again we have some trust with them as we have not seen any adverse reactions. Oddly the only time recently we have noticed a reaction was after a trip to Pizza Express – which was very disappointing.

Appointment day arrives – Noah gets to leave school in the middle of the day, which he really liked.  The results were great. All good and a ‘well done Mum & Dad’.  Blood count was below the limit, so we continue to manage Noah’s diet (and ours), although now and after the team there were able to analyse the blood result, Noah needs to eat more protein, as his iron level was a little low – increase his meat intake.  Eating his own body weight in green vegetables was not going to be an option!

And so the journey continues, as Noah gets older, so will his tastes and so will this blog (hopefully) continue to provide an insight into Noah’s world.  There will be an interesting time coming up – and an opportunity to try foods he will have never seen before – more on that later in the year.

So onto a new recipe, soft, sweet and crunchy with a little bitterness from the berries

Line a small 20x10x3cm baking tray with greaseproof for the cake and line a shallow tray with greaseproof for the crumble mix and preheat the oven to Gas 4/180c

gluten-free-chocolate-and-blackcurrant-crumble-slices

For the sponge-

120g very soft butter

120g light brown sugar

3 eggs lightly beaten

80g gluten free self raising flour

30g Cocoa

10g Ground Almonds

1/2 teaspoon of baking powder

60g sour cream

The Jam –

200g Blackcurrant Jam (or make your own – see below)

The Crumble –

100g Gluten free plain flour

70g butter

70g caster sugar

To begin with put the crumble ingredients into a food mixer and blend until you have ‘breadcrumbs’. A few short bursts on pulse should do it. Then spread the crumble mix in the shallow tray and bake for about 10 – 12 minutes or until the mix is lightly browned. And as it’s gluten free it will have all merged into one ‘biscuit’. Fear not, just leave it to go cold and break it up to form nice crispy bits . Leave to one side for now.

To make the sponge, pop all the ingredients (not the jam) into your mixer (I used a kitchen aid mixer with a beater attachment) and beat for about 3 – 4 minutes until all the ingredients are fully blended and mixed together. Pour into the 3cm deep tray and bake for about 20 minutes, or until an inserted skewer comes out clean. Allow to cool before removing from the tray.

Spread with the Blackcurrant jam and sprinkle over with the cooled Crumble … Slice and enjoy

Now I did have some Blackcurrant in the freezer and made my own quick jam. 250g of fresh (defrosted) Blackcurrants and 150g granulated sugar.  Pop them into a saucepan and bring to a slow boil, stirring and boil for about 15 minutes. Leave to cool before using.

Ad – fancy buying that Easter Egg? Click the link to do so from Amazon, and maybe get your Mother Day gift too?

http://amzn.to/2ldcSX9

cadburys-creme-eggs

 

Coeliac Awareness Week – May 2019 – Noah’s Tale

Some things are hard to put into words.

I’m sure there are many out there, in Coeliac Awareness Week, who have a similar story to tell. But perhaps not many, a story about an 18 month old little boy.

It all began in the summer of 2012. Noah was around 18 months old and we are about to embark on a summer holiday with the family and the in-laws in France. Living as we do ‘up-North’, an overnight stay was required in Portsmouth. However we didn’t have the start we would have liked and Noah was very poorly on the way down. Something that had not happened before, but as it was his first long trip in the car, we put this down to travel sickness and perhaps one too many sweets…..

And so the holiday began. A week in a chalet in France with family around you, what could possible go wrong!  But little did we know, Noah though had already begun his painful journey and that week he barely ate and we barely slept.

We returned home a week later. Returning to our respective work places, school and Noah returned to full-time nursery.

And then the most stressful 3 months followed.  Noah’s health deteriorated rapidly. Noah wasn’t getting any better after our return from holiday and although he would eat, it wouldn’t take long for it to return out of one or another or even both ends. We would wake to him during the night screaming in pain and having just thrown up. we’d go to bed with our hearts in our mouths, hoping he’d still be breathing! We were at our wits end – the washing machine didn’t stop. But we somehow continued, tried to live our lives. We would get calls from the nursery telling us Noah had been ill and because they had a 48 hour policy, we had to stay at home with him. We both had some very understanding employers. But as soon as he had been ill, he  was much better! All smiles and laughter. It was getting a little frustrating.

Naturally we sought the help of the NHS, but to start with they were about as useful as a chocolate teapot!  But more than anything it was the screams of what we could tell was pain and discomfort. When this got magnified in a surgery waiting room, it made things more unbearable. Yes we were given medicine. Some to make home ‘stop’ and some to make him ‘go’, but Noah was losing weight fast and had become quite withdrawn. His tummy was distended, bloated. He was what we now know, malnourished. Morning after morning we would wake and not know what we would find. We were no nearer knowing what the problem was.

That was until a dear friend of ours suggested we try an osteopath. Yes and Osteo! We would try anything. After all the NHS nearby wasn’t being very helpful and so still screaming in pain and discomfort, we took Noah for his appointment. The Osteo asked us lots of questions and made some rather insightful comments. The best thing Noah could have done at that point?

He threw up.

All over the Osteo and the floor; again, afterwards, Noah was the better child again, all smiles and cheer. More importantly, the Osteo was able to look at the vomit and conclude that everything Noah was eating wasn’t being digested and was somehow fermenting in his stomach, until such time as it needed to come back up! With immediate effect we were told to remove gluten and lactose from Noah’s diet. Within the week Noah practically transformed (and so did our bank balance – this stuff wasn’t cheap!).

One small step. But we still needed to find out what was wrong with our little boy. We made a rather frustrated and overly concerned call to the health visitor and managed to get a rather hasty appointment with a doctor to urge for a referral. In the meantime bloods were taken and we were given an iron supplement as Noah’s height and weight were well under that for his age. But we were at least able to rule our Diabetes.

Over  the next couple of months, Noah came ‘back to life’, our little boy started to return, but it would still be another 3 months (some 6 months after our holiday) until the specialist appointment, for which we had to return gluten to his daily diet. But we able to make the necessary arrangements at home. A new and separate toaster, his own butter and jam. We dissected the food labels and became experts in what contained gluten and what didn’t. Cooking fresh, became the order of the day, which for us was not a problem.  Cross contamination became the watch word. The day of the specialist appointment came. We had put Noah back onto a diet containing gluten. Can’t have a positive blood count if you have removed all the gluten from the diet. We didn’t go the whole week putting Noah back onto gluten, we could tell he wasn’t very well after a day or so we removed it pretty quickly. it did not impact on the test.  The team at North Staffordshire Hospital could not have been anymore helpful. It was a delight that finally we could get some answers from someone who wanted to help. The taking of the bloods wasn’t a pretty ordeal, but it was required. But after all the questions and answers and after the test results were returned, it was without doubt, Noah had Coelaic Disease. No need for a biopsy the blood results were conclusive enough, and he wasn’t lactose intolerant.

With our prescription in hand, we returned to our local surgery and then in turn the pharmacist, who was a little sceptical at first, but they are now a little more understanding.

 

And now, Noah is Noah. He started school September 2015 and we turned a new chapter in his gluten free life. He has started to learn more about what he can and can’t eat. He has also come under the responsibility of others; school and his local scout group, they have been both helpful and understanding; we don’t want all the hard work to come undone. Noah has now had 5 years of great blood tests and we continue to be under the specialist care of North Staffs Hospital, even if that is further away than our nearby hospital, he will continue to have his annual check up there as they are fantastic.  Noah knows that he has Coeliac Disease, he knows that he needs to eat foods that are Gluten Free.

Our new greatest hurdle is getting Noah to try different foods, there seems to be a something that is within him that distrusts food. If we are not there to ask or check with, he won’t eat. He needs that reassurance. As he grows he will find out for himself  more and more of what his body can and can’t take. As he grows the choices will be wider, as, we have seen the food industry adapt. Who knows where this will lead in the coming years, as there is still a long way to go for certain parts of the catering industry yet to adapt and remain consistent in their approach to allergies, intolerances and disease.

But for now Noah, you are gluten free and you cannot be ‘normal free’

For further reference the following websites are all you need

http://www.coeliac.org.uk

http://www.isitcoeliacdisease.org.uk

This is a revised and updated post from 2015

 

Coeliac Awareness Week – May 2016 – Noah’s Tale

Some things are hard to put into words.

I’m sure there are many out there, in this special Coeliac Awareness Week, who have a similar story to tell. But perhaps not many, a story about an 18 month old little boy.

I have alluded on an earlier post, but as its Coeliac Awareness Week, I wanted to share in more detail. There are others out there, who are having to cope with symptoms they are not able to pin point, so here is our story, which will be a permanent fixture on the blog.

It all began in the summer of 2012. Noah is around 18 months old and we are about to embark on a summer holiday with the family and the in-laws in France. Living as we do ‘up-North’, an overnight stay was required in Portsmouth. However we didn’t have the start we would have liked and Noah was very poorly on the way down. Something that had not happened before, but as it was his first long trip in the car, we put this down to travel sickness and perhaps one too many sweets…..

And so the holiday began. A week in a chalet in France with family around you, what could possible go wrong!  But little did we know, Noah though had already begun his painful journey and that week he barely ate and we barely slept.

We returned home a week later. Returning to our respective work places, school and Noah returned to full-time nursery.

And then the most stressful 3 months followed.  Noah’s health deteriorated rapidly. Noah wasn’t getting any better after our return from holiday and although he would eat, it wouldn’t take long for it to return out of one or another or even both ends. We would wake to him during the night screaming in pain and having just thrown up. We were at our wits end and the washing machine didn’t stop. But we somehow continued, tried to live our lives. We would get calls from the nursery telling us Noah had been ill and because they had a 48 hour policy, we had to stay at home with him. We both had some very understanding employers. But as soon as he had been ill, he  was much better! All smiles and laughter. It was getting a little frustrating.

Naturally we sought the help of the NHS, but to start with they were about as useful as a chocolate teapot! And more than anything it was the screams of what we could tell was pain and discomfort. And when this got magnified in a surgery waiting room, it made things more unbearable. Yes we were given medicine. Some to make home ‘stop’ and some to make him ‘go’, but Noah was losing weight and had become quite withdrawn. His tummy was distended, bloated. He was what we now know, malnourished. Morning after morning we would wake and not know what we would find. We were no nearer knowing what the problem was.

That was until a dear friend of ours suggested we try an osteopath. Yes and Osteo! We would try anything. After all the NHS wasn’t being very helpful. And so still screaming in pain and discomfort, we took Noah for his appointment. He asked us lots of questions and made some rather insightful insights. And the best thing Noah could have done at that point? He threw up. All over the Osteo and the floor. And again after, Noah was the better child again, all smiles and cheer. But more importantly, the Osteo was able to look at the vomit and conclude that everything Noah was eating wasn’t being digested, and was somehow fermenting in his stomach, until such time as it needed to come back up! With immediate effect we were told to remove gluten and lactose from Noah’s diet. Within the week Noah practically transformed (and so did our bank balance – this stuff wasn’t cheap!).

One small step. But were still needed to find out what was wrong with our little boy. We made a rather frustrated and overly concerned call to the health visitor and managed to get a rather hasty appointment with a doctor to urge for a referral. In the meantime bloods were taken and we were given an iron supplement as Noah height and weight were well that for his age. But we were at least able to rule our Diabetes.

And over the next couple of months, Noah came ‘back to life’, our little boy started to return, but it would still be another 3 months (some 6 months after our holiday) until the specialist appointment, for which we had to return gluten to his daily diet. But for now we made the necessary arrangements at home. A new and separate toaster, his own butter and jam. We dissected the food labels and became experts in what contained gluten and what didn’t. Cooking fresh, became the order of the day, which for us was not a problem.  Cross contamination became the watch word. The day of the specialist appointment came. We had put Noah back onto a diet containing gluten and the team at North Staffordshire Hospital could not have been anymore helpful. It was a delight that finally we could get some answers from someone who wanted to help. The taking of the bloods wasn’t a pretty ordeal, but it was required. But after all the questions and answers and after the test results were returned, it was without doubt, Noah had Coelaic Disease. No need for a biopsy the blood results were conclusive enough, but he wasn’t lactose intolerant.

With our prescription in hand, we returned to our local surgery and then in turn the pharmacist. Who was a little sceptical at first, but they are now a little more understanding

Noah Coeliac Awareness Week 2016

And now, Noah is Noah. He started school September 2015 and we will turn to a new chapter in his gluten free life as he starts to learn more about what he can and can’t eat. He will be in the hands of others. We have had words with the school caterer and they are very accommodating. We don’t want all the hard work to come undone. Noah has had 3 years of great blood tests and we continue to be under the specialist care of North Staffs, even if that is further away than our nearby hospital. He will continue to have his annual check up. Noah knows that he has ‘Coeliac Disease’, he knows that he needs to eat foods that are ‘Gluten Free’.

And here this part of the story ends. But it does not stop. As he grows he will find out for himself, more and more of what his body can and can’t take. And as he grows the choices will be wider, even in the last 3 years we have seen the food industry adapt. Who knows where this will lead in the coming years.

But for now Noah, you are Gluten free and you cannot be ‘normal free’

For further reference the following websites are all you need

http://www.coeliac.org.uk

http://www.isitcoeliacdisease.org.uk