Reactions to Celiac Disease Diagnosis

October 19th, 2008 by admin

When Jamie got his celiac disease diagnosis it was hardly a surprise, and most people close to us knew he was already on a gluten free diet already. But a few people’s reactions took us a bit by surprise!

People who thought we were being ‘over the top’ or ‘fussy’ parents. I guess if people don’t know anything about celiac disease (and why should they? I certainly didn’t a year ago!) it can seem a bit fussy from the outside, especially avoiding contamination by the careful hand washing, separate margarine and toaster etc. I was told a couple of times I was being a bit over the top. My only answer was to point out that if a simple crumb of toast had the capacity to curl Jamie up in agony the day after, then I was going to be over the top! I have learnt to just have grace with people who don’t understand, try and educate them when it matters (if Jamie is going to their house for tea they do need to understand the consequences!) and not mind their opinions when it doesn’t matter. Using phrases like ‘toxic to his system’ and ‘extreme reaction’ helps!
Along with those who thought we were over the top were those who thought they’d be ‘on his side’ and offer him a biscuit or sweet ‘just this once’, ‘while Mum’s not looking’. Not helpful, and fortunately Jamie is well aware of the consequences and refuses every time.
People who were scared off. It saddened us a lot that invitations for Jamie to go for tea with friends did decrease noticeably after his celiac disease diagnosis. I think maybe some mums, afraid of feeding him the wrong thing or not knowing what to feed him, just found it easier to invite someone else instead. I can understand it, but Jamie was a bit upset. We overcame it - to some extent - by inviting his friends to our house more regularly, and I don’t think any of them even noticed they were eating gluten free! He is starting to be invited places again, and I always suggest a baked potato with cheese (cheap and cheerful) if I’m asked for suggestions - otherwise he can take a gluten free equivalent with him.
People who write it off as a simple change of diet. Yes, it is a change of diet, but it’s not simple at all at first, and I did get a bit wound up by the people who told me I’d cope easily, and that there was loads of gluten free stuff in the shops now (yes - it is getting better, but there isn’t that enough, it doesn’t taste the same and they have never looked at the prices of these specialist foods!!). Catering for a completely gluten free diet does involve a radical change of eating habits for the whole family, a lot more work (I bake 3-4 times a week now instead of once) and it can be very expensive.
Supportive people: I was really blessed to have many of these! The ones who asked sensible questions and bought in a packet of gluten free biscuits to have in their cupboard in case Jamie came round. They were brilliant. Jamie’s school was also brilliant, I met with his teacher and head teacher before term started and explained the condition and gluten free diet and they have been completely supportive throughout - even providing gluten free bread at the harvest festival this month so he could participate fully. These were also the people who didn’t downplay the changes I was having to make but listened and suggested and told me I was doing a great job. It does get easier. But supportive people (especially those who have ‘been there’ themselves) are really worth their weight in gold after a celiac disease diagnosis.