My son was diagnosed with coeliacs disease when he was 5 years old, he’s now 14. His father, my husband, was diagnosed the year before, when he was 33 years old. Apparently the disease is not hereditary…..just an amazing coincidence!Since my son turned 8 years old we’ve battled (understatement) with his compliance. He has resisted in any which way that he can, he’s developed a needle phobia (not ideal for someone who MUST have yearly blood tests), he’s dug his heals in with the dietician and he’s even become angry at the disease itself and could often be heard saying “why me”?
Years have passed and still his opinion of the disease has not changed. Consultants and dieticians have come and gone, he’s received help for his needle fear but still he flips out and the staff become frustrated with the length of time it takes to take blood. Every year we have the same lengthy battle. As a mother I have tried everything to try and make ‘life as a coeliac’ better but boy it’s a struggle.
My son’s diet is very healthy and gluten is removed from his diet (or at least it is when he’s at home and in my company), I have to trust him to be sensible when he’s at school etc. Having said that, whilst we were recently on holiday in Greece, it was very hard for my son to resist the pasta bar (his favourite meal) and as someone (me) who follows a diet (slimming), I completely understand how difficult it can be to avoid temptation. So, rightly or wrongly, we allowed him to be a little naughty on holiday.
Thankfully, to our amazement, he suffered no ill effects from straying off the diet…..there were no loose stools (sorry for the details)!!! However sadly, on our return, the ill effects have come in the form of advice from other’s, to be more precise…..grandparents!
My son happened to mention to his grandparents today that he believes he no longer suffers with coeliac disease due to the lack of symptoms experienced during his holiday. My father-in-law, with his limited knowledge of the disease, decided to repeat a story he first told my son when he was first diagnosed at 5 years old…… The story goes like this…..
“I had a friend at work (1970’s) who had celiac disease, he completely cut out wheat and hated it so he started eating it again, he wasn’t poorly so he return to the doctor who told him he’d probably just grown out of it.” The first time I heard him tell the story I told him 1) you can not just grow out of celiac disease 2) medicine has moved on a bit since then 3) his friend may have been either wrongly diagnosed or misinformed by his GP and 4) pleased don’t fill my son’s head with false hope.
So as you can imagine, I’m really chuffed to hear that he has told the same story to my son again!!! My son is now even more convinced that it’s true, “see it can happen mum….i’m cured”!!!
Why do people feel like they have the right to impose their opinion and beliefs on to others? Why are they not working with us? And more importantly why are they trying to harm my son….their grandson?
Its terrible behaviour and I’m so shocked I’m not sure how to handle it……again. My husband tells me to ‘just let it go’…..really?
My son’s blood appointment is in a few weeks then a month after that we are back to the dietician, so the timing is just great!!!
Advice needed please.