Coeliac Awareness Week – May 2017 – 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.

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! 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 Some to make home ‘stop’ and some to make him ‘go’, but Noah was losing weight and had become quite withdrawn.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 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

Noah Coeliac Awareness Week 2016

And now, Noah is Noah. He started school September 2015 and we turned a new chapter in his gluten free life. He started to learn more about what he can and can’t eat. He was also in the hands of others for the first time, but we had a discussion with the school caterer and they are very accommodating and understanding; we didn’t want all the hard work to come undone. Noah has now had 4 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.

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. As he grows the choices will be wider, as, even in the last 3 years, we have seen the food industry adapt. Who knows where this will lead in the coming years, as there is still a long way 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

 

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