it’s been a week

It’s been a week since we started the gluten-free diet for the middle boy.

He’s doing very well coming to terms with being coeliac. He has been extremely tired and wrung-out. We figure he has to get used to the new diet, and give his body time to heal.

Now we think the youngest boy is coeliac too. He was sick for 12 days straight recently. So sick. The doctor said it was a virus. On Day 10, I put him on a gluten-free and lactose-free diet. He started getting better that day, and was completely well within 2 days. I wondered if it was a coincidence, so I let him return to his normal diet, and within 2 days he was sick again. I didn’t need any further proof. He has been gluten-free and well for 5 days. We are waiting on the blood test results, but we don’t know what they will show as this boy had been gluten-free for 4 days in the week before the blood test was taken. The doctor said we may have to do a gluten challenge for 2 weeks and take another blood test. I don’t want to see my child that sick again.

Me?

I’m so tired of people saying to me “at least there are lots of options in gluten-free food these days”. I just want to scream. They don’t know the half of it.

The biggest problem is cross-contamination. No wheat product shall pass these children’s lips. Coeliac is not a lifestyle choice or a food intolerance where you can cheat just a little bit sometimes. It is an auto-immune disease. If you get a little bit of gluten in you then your body attacks itself.

I have to clean the toaster before I make gluten-free toast just in case there is a stray breadcrumb lurking in there. My eldest son went to dip a crumb-laden knife into the honey jar yesterday and I had a conniption. I bought separate spreads this morning for the coeliac kids.

Wheat is in many foods, even in those where it seems to make no sense. At the moment, I can only trust foods that have a ‘gluten free’ sticker.

I have also been on the gluten-free diet to gain an understanding of what it is like for my children. It’s not easy-peasy. I look around at “all” of the gluten-free food options and it’s a narrow range. I had to travel into the city one day this week for work, a three hour commute one way. I regarded it as an experiment and treated it like I was going on a day trip, so I took very little food with me. There weren’t a lot of gluten-free options. Where is the hidden wheat in sauces, dressings, or seasonings? Has the food been prepared alongside wheat products? Have they cooked the food in the same oil that gluten foods are cooked in?

My middle boy is appreciating that I am walking this path with him. We sit down at the end of the day and have a discussion about how we are going with it. He has been sick for so long that he was getting anxious about eating for fear of getting sick. I explain to him all of the foods I am preparing for him, and he nods and says “trust Mum”. He did ask me if he will have coeliac for the rest of his life, and I think he already knew but he needed me to affirm him. I replied “sorry bub”, there was nothing else I could say.

We have to be so much better prepared in this gluten-free life. I have to think about his day and what he has scheduled and pack him enough food to cover all contingencies. And with the youngest one, we are wondering whether coeliac is the root cause of some of his behaviour difficulties. There are some studies around that suggest it may be.

I’m such a sentimental person, my greatest sorrow is the loss of our family traditions. My husband makes Country-Women’s-Association-quality scones and he would make a lovely afternoon tea for us on occasions. When we went out for the day in the mountains, it was customary to buy an apple pie from one of the roadside stalls or orchards to share when we came home. The school canteen offers no gluten-free food so the weekly lunch order that the boys enjoyed so much (and I enjoyed not having to pack a lunch) is no more. The sausage sandwich that the boys looked forward to after their soccer game on the weekend has also been scrapped. We can no longer go to our favourite Chinese restaurant. My middle boy loves to eat baked beans on toast for a quick and nutritious meal, and the youngest one likes tinned spaghetti, but those old pantry staples are no longer available. The middle boy has been invited to a birthday party in a few weeks’ time and my head is spinning trying to figure out how we are going to accommodate this one.

I know it’s a first world problem. But.

A chaplain said to me recently, “you can never say to someone ‘I know how you feel’, because even though you may have experienced something similar, you will never know what it is like for that person”. This is good advice. I am so tired of people telling me what to do and how to do it, in response to our coeliac experience, especially as they are not coeliac. I don’t need their advice, I just need them to say “well that kinda sucks, I can see where you are coming from”. I don’t need them to look on the bright side and tell me all of the positives, my eyes are wide open thank you because I am living this life. And it’s not that I’m maudlin, I’m just realistic. It is what it is. Don’t ask me how it’s going if you don’t want to hear.

I wrote in my last post, that a woman at church, upon hearing the news of our coeliac diagnosis, didn’t give me the usual platitudes, but instead made some gluten free food for my son. Now that is compassion in action. Actually most of the church people have kindly enquired how my son is but not offered any advice or tried to jolly me up.

So, this is where we are at, one week down the track. it’s a challenge. It’s brought us closer together. I wake up through the night and the first thing I think of is ‘coeliac’. I’m grateful for the medical care we have received and for the diagnosis itself because the long-term implications of  undiagnosed coeliac disease are not good. The specialist is kicking up her heels in Argentina at the moment, so we have to wait for a few weeks to receive our letter to join the secret coeliac society. We are plodding along.

For a fabulous post about grace and generosity, check out this one by Kelly Diels.