We are starting a new adventure this year: gluten free cooking, baking and eating. After a routine blood test brought it to our attention and an endoscopy confirmed, our Lady Love was diagnosed with celiac’s disease in December. To support her and because we want to eat together and share food, we are doing the gluten free living thing. Mostly. Totally gluten free for Bug, with a few residual gluten crackers and granola bars for the boys. It was a shock to the system. Again. It was not quite the blow of last August but we could just be getting better at this unexpected medical issue thing. Funny but not funny. :)
For the curious, celiac disease is a genetic autoimmune disease where eating gluten, a protein found in wheat, rye and barley, can damage the small intestine and cause other health issues. The incidence of celiac in people with type 1 diabetes is 6% so they routinely test for it as part of good diabetic care. While that rate is higher than the general population percentage of 1%, it still feels like a bit of overkill to us. Two autoimmune diseases? Really? She’s only eight.
After the initial shock of the diagnosis, I was left with, what now? Another “new normal”? And this time, I have to change my cooking and baking? Something I’ve done for myself and others for about 20 years? It’s one thing to figure portions, weigh food and count carbs but now I have to learn to use entirely new ingredients?! UUUUUUUUUGH! I had a slew of days where I felt sorry for myself as the food maker in the house. I ate gluten products, lamenting all the learning, relearning and new stuff I have before me. Side note: I love to learn and often seek opportunities to do so but, when forced to stare straight up the learning curve at something you’re not enthused about, it’s intimidating, overwhelming and annoying as all get out.
So, what does that mean for us? We’ve made some big changes. The kitchen got a thorough inventory. Everything that wasn’t prepackaged to eat – crackers, granola bars – and wasn’t gluten free, we tossed. Soy sauce, pancake syrup, hot chocolate mix and more, all gone and replaced with gluten free versions. We read so many labels and Google everything we are unsure of. I’ve asked friends for advice, checked out books and even moved the regular gluten flour to the bottom of the pantry cupboard (for use in work things) and put the gluten free all-purpose blend (found here) in my baking cupboard. We are invested and in it for the long haul.
There is a possibility more of us have celiac. With a first degree relative, our chances are 1 in 10 to either have it or develop it. MJ, Sweet J and I are getting tested. Pipsqueak has to wait until he’s three.
The good part and it might be the bestest thing ever: we have one heck of a Lady Love. She is bubbly and enthusiastic and tough. Blood tests aren’t fun and an endoscopy is a bit unnerving but she handled them with minimal complaining and even fewer tears. I can tell she ruminates about this new normal often. (Seriously, two diseases?) She is constantly seeking the positive side of things. She will share bits like “Gluten free food tastes so good!” Or “I like this gluten free version better”. It’s like she’s trying to keep me going too. For an eight year old, her will power and self control is astounding, for both diabetes and celiac management. Even at her young age, I think she understands how important it is to take care of her health and body.
She has had some lower moments. After one of our adult friends asked her about being gluten free, she said “It stinks.” We talked her about it afterwards, asking “Do you not like the food we are preparing? What else can we do?” She told us she said it because she doesn’t want celiac disease. She doesn’t get to eat some of her favorite foods anymore and that’s why it stinks. All I could do was hug her. Her lowest moment came when, during a dietician appointment, she was made aware of the increased chance of her brothers having celiac. That wrecked her. She cried in the appointment, as we drove home, at school and again at home in the evening. Her tears weren’t for herself or the changes and crud she has to endure. She was heartbroken that her brothers might have it too. While I grieve for the boundaries she has and I feel sad that I can’t take it away from her, I console myself that her spirit and soul are pure.
Okay, wrapping up. As I said a few days ago, things will be lighter here. I still love this space but things are changing including me. Cooking and baking is different for me now. Even though, at this time, I don’t have an issue for gluten, I feel like making anything that my Bug can’t eat is just silly. Alls to say, the food stuff will be a gluten free or at least, gluten-free amendable.
If you have any gluten free suggests on food, recipes, sites, books or other, share! We’d love to know. We know we aren’t the first and we aren’t the last. We’ve joined a group and we’ll get the hang of it.