After the trauma of his biopsy, Jamie started straight away on a gluten free diet. His tummy aches had been so bad that it was a relief to stop feeding him food that was effectively poisoning him and we didn’t need to wait for an official celiac disease diagnosis. It was then that the implications of a gluten free diet (for life!) really hit me.
There suddenly seemed to be gluten in everything! Not just the bread that he has in his lunchbox every day, or the Shreddies that he has for breakfast: it was in the gravy granules I put in my casseroles, the birthday cake that someone took to school, the hot dogs at his friend’s party, the licorice allsorts he loved, the sausgages at a bbq… I had been so focused on finding the answer and stopping the tummy aches that I hadn’t thought too much about what I was actually going to feed my child! A gluten free diet was not going to be as easy as I had expected.
We ate a lot of salad and fresh meat or fish in the first part of the summer – which was very healthy but he missed a lot of foods he had enjoyed before, like lasagne, pasta based stuff and pizzas. There are gluten free alternatives in the shops, but I was horrified at the cost, especially of the bread and biscuits.
Meanwhile, Jamie was feeling much better for the gluten free diet. After a couple of weeks where there seemed to be no change, he picked up quickly and lost the tummy aches (great celebrations!). It took longer for his energy levels to improve. Probably months rather than weeks and I am told that is unusual (celiacs often have a propensity to anemia but we were’t going through the trauma of another blood test to find out!). At first it was a novelty for him ’being celiac’ but the afternoon when we went to a bbq and there was an enormous gooey chocolate cake, covered in maltesers which he couldn’t have was a particularly difficult one. He got over it. I made a chocolate cake just as gooey that evening.
It was about a month between Jamie having his biopsy, and getting the official celiac disease diagnosis. In that month I swung from relief that he was so much better, to wondering how I would cope with this gluten free diet, to wondering if it had all been a series of childhood tummy aches which had cleared up naturally and had nothing to do with celiac disease (there was nothing wrong with my child!).
Inside we knew the result would be positive. Strangely it still hit me like a ton of bricks when we were told it was definitely celiacs disease. I was sad for my son who I was afraid would always feel ‘different’. I wondered if it would affect his future – whether it would stop him doing things he wanted to, like travelling or whether he would always feel awkward going out to eat. I hadn’t a clue how I could sustain the amount of baking, meal planning and shopping for unusual ingredients that I was doing.
It felt like one of those films, where you watch a bit, then the credits and title come up and it’s officially started, then you just get on with it properly.
So we did.
