A guest blog from one of our users whose son was diagnosed with Coeliac Disease last year.
I have been aware of Coeliac disease for most of my life as my Gran had it. She was diagnosed in her late 30s/early 40s, not long after the end of WW2. All that was available on prescription for her when I was little was tinned bread!
Things have moved on since then. My son first became ill almost two years ago. He had nose bleeds, vague stomach aches and occasional headaches. It was initially put down to stress. He eventually got to the point where he was exhausted and after blood tests we discovered he was anaemic. Our GP wanted to do further tests for Coeliac and Crohns disease (my Dad was diagnosed with Crohns when he was 13). His antibody test came back at over 1200. He then had an endoscopy to confirm diagnosis which showed no visible villae and that his stomach lining was so inflamed it was liable to ulcerate.
He has been Gluten Free for around 7 months now and is coping well considering his pre-diagnosis diet was mainly pizza, pasta, and fajitas. He doesn’t eat at school because, although they are very knowledgeable and accommodating, he has to queue in a busy canteen instead of at the “quick serve” take-away bar and they take longer to serve him as they need to change their gloves etc. The range of suitable foods available is also limited unless he provides things like pizza bases himself. He is now cooking for himself at home and has his own utensils, oven trays, toaster and fryer. He misses “real” pizza and going out with his friends is challenging as they want to eat at places like buffets and he can’t take the chance that he will be ‘glutened’ by cross contamination. However, his best friends’ sister was diagnosed as coeliac at the same time as him so they are very aware and another friend has a brother with dairy intolerance so he has some peer support there too.
We have only eaten out twice since his diagnosis and only where we can see his food being prepared because we have heard some horror stories such as some chefs thinking that gluten can be “killed” in a hot fryer! We have had a GF Chinese take-away though, which he really enjoyed.
While there are lots of GF foods available it is not always easy finding them as the local stores have a very limited and inconsistent range. So, when we find something he likes we tend to stock up in case we can’t get it again.
It has been difficult to get to this point however he leaves school in two weeks to begin college and I am proud he has been able to do this despite his illness beginning at such a crucial time.
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