You could be forgiven for thinking that I have only two sons. I usually only write about the eldest or the youngest because they frequently challenge me.
There is a middle boy.
He is no fuss at all. He is sociable, funny, amiable, and smart. He does his school work on time and independently. I don’t need to remind him of anything or help him with anything. He’s always been the same – easy. On his first day of kindergarten his teacher said to me “you can clone this one”. He has been a bit too independent at times though. When he was five and the neighbours were selling their house, he asked if I could buy it for him so he could live in it by himself.
The past year has not been so easy for him. He has been ill on occasions, really ill.
It started completely randomly. He was getting stomach pain after eating his beloved porridge, so we cut out oats from his diet. But then he got really sick. We initially thought that he was getting food poisoning, but it was strange that he was the only one in the family getting sick. Then as the illness became more frequent we started wondering whether he was intolerant to certain foods. He seemed to get sick when he had eaten processed meats or cheese. But this was not reliable either. He would get sick if he ate a cheese slice but not if I gave him grated cheese from a block of cheese. He would get sick from cabanossi but not chorizo.
I took him to the doctor when he started getting sick every two weeks. In his first five days of high school at the start of this year he missed three days due to two separate illnesses.
The blood tests came back with really high markers for coeliac disease. Where the normal levels are 15, his were 170.
However we couldn’t put him on a gluten-free diet because he needed to be referred to a specialist, and he needed to test positive for any tests she would put him through. So we waited several months for the appointment. I would occasionally give him gluten-free foods to see what he liked, and he grumbled at me that he didn’t like any of those foods. We were so careful with his diet trying to avoid anything that would make him sick and for 10 whole weeks he was well.
But then he went to a church camp and ate something that set him off again. He was sick every week up until the appointment with the paediatric gastroenterologist. She didn’t muck around. She ordered an endoscopy and biopsy to confirm coeliac disease although she wasn’t entirely sure because his symptoms didn’t quite match coeliac disease. She told us we could wait several months to have the procedure done in a public hospital or pay to have the procedure done in a private hospital in two weeks time. We chose the latter.
He had to be well 48 hours prior to the procedure and I was hypervigilant to everything he ate. It didn’t help my anxiety that his younger brother was suffering from a virus that week that caused vomiting and diarrhoea.
The biopsy confirmed that this middle boy has coeliac disease, and we are now on Day 2 of a gluten-free diet. And in his typical style he has taken to it easily. Foods that he grumbled at a few months ago, he now says they are good, and better than the regular products.
Yesterday, Day 1, he wanted to go to a friend’s house, so I packed him off with a bag of sanctioned food with instructions to say ‘no’ to everything they might offer him. Here in Australia, there is a coeliac society, but you cannot become a member unless you have an introductory letter from a doctor. The coeliac society issues the lists of approved gluten-free foods. Until we receive the letter and join him up we do not know exactly what is OK. This boy, who loves history, is impressed that he gets to be a member of a secret society. My husband found a cartoon on the internet that had a group of people gathered together with placards saying “free the glutens”. So, we joke that he is a freegluten instead of a freemason.
I’m in the process of sorting out the pantry, separating the wheat from the wheat-free. Wheat is in a lot of things. Even rice wine vinegar and tomato paste has wheat in it. I whooped this morning at every food that I discovered in the pantry that was gluten-free, particularly our regular brand of tomato sauce. Such simple joys. The dogs are enjoying their feast of wheat-laden foods.
We have to be careful of cross contamination. This boy now has his own tub of butter so no wheat crumbs will taint it. The lady at the German bakery that makes very good gluten-free bread advised that she couldn’t slice it for us, as the slicer is used for regular bread. D’oh – of course! A woman at church this morning handed me some gluten-free sausage rolls and a chocolate slice that she made for my son. Some people are so dang thoughtful, but I’m kinda worried about what type of chocolate she put in the slice because some of it contains gluten. The slightest skerrick of gluten will not allow his body to heal.
We have decided that the whole family will go gluten-free for shared meals. The other boys will continue to enjoy bread, cakes, and biscuits containing wheat, and the middle boy has his own stash. But now that one of us has been diagnosed, we all need to be tested. There is a strong chance that it is genetic. My husband is pointing his finger at me because I am already lactose and yeast intolerant. However, coeliac is an auto-immune disease not a food intolerance so we will see who is the other freegluten in the family.