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

 

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8 thoughts on “Coeliac Awareness Week – May 2016 – Noah’s Tale

  1. What a story so hard when your precious little one is sick and no one can tell what’s wrong. Glad you have a diagnosis Nosh is a lucky boy to have such a caring family

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      1. Brilliant one of my daughters has a coeliac friend she’s 17 now and manages to get along just fine with her diet in spite of regular nights that include take aways etc kids are amazingly resilient and resourceful aren’t they ?

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  2. Brought tears to my eyes, i’ll never forget that day when poor Noah was inconsoleable. I’m so glad you followed through and saw the Osteopath (cranial) – so many people don’t bother but they really are incredibly clever people. Loving watching Noah grow up and enjoying tasting your practice runs occasionally xx

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  3. What a great post. When I wrote about the day our daughter was diagnosed with coeliac disease it made me feel so much better. Your journey sounds long and hard but at least Noah is well now.

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    1. I share the empathy. It was indeed a feeling of relief after nearly 8 months of stress and pain, for both us & Noah. To see him ‘come back to life’ was more than words can say

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