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.
Hi! I am so sorry for your sweet daughter. I’m a 28 year old Celiac who was diagnosed two years ago. I promise it does get easier. It is so hard at first, it just is! I’ve had a few big meltdowns over the past two years (especially in the first few months) and just had to cry it out, pick myself up and try again. You’re having to learn a whole new thought process around cooking. There’s a BIG learning curve but once you start getting the hang of it and know what to look for it will start being easier and easier :) Some helpful resources:
Super helpful book: I picked this up recently and have been reading through it. It really explains a lot of the science behind Celiac disease and how it affects the body as well as offering helpful information about the gluten free diet/treating Celiac https://www.amazon.com/Celiac-Disease-Revised-Updated-Epidemic/dp/0061728160
There’s some great gluten free bloggers out there. My favorite is Gluten Dude. He’s a big advocate for Celiac disease and has some really helpful blog posts including one about keeping a gluten free kitchen. http://glutendude.com/gluten/keeping-a-gluten-free-kitchen-in-a-gluten-filled-world/
This is one of the crummy parts. You may want to consider changing out your cookware or getting new cookware to make your daughter’s food on. Unfortunately I can attest to to how much this helps with cross contamination. You may also want to consider using a separate sponge to clean cookware with. If you use a toaster unfortunately this is a big spot for cross contamination, you’ll need a new toaster for gluten free products only. Cross contamination is one of the most confusing parts of Celiac disease to me personally because you can’t see it and its sometimes hard to explain to other people. One of my favorite metaphors is think about raw chicken. You wouldn’t chop up raw chicken and then turn around and use the same cutting board and knife to chop up lettuce for your salad. Even though you can’t see the gluten necessarily like you can with raw chicken, its still there and can still make you sick (even a very small amount).
Cosmetics/lotions/shampoo: I would also recommend looking into gluten free body care products. Not everyone thinks that gluten in lotion/shampoo etc is that big of a deal but when a lot of Celiacs (myself included) avoid it to prevent any unnecessary cross contamination/absorption.Some of the logic behind this is a) you absorb stuff through your skin and b) if you have gluten in your lotion for example and its now on your hands and then you touch your mouth you may inadvertently gluten yourself. You may want to look into this more as there’s a few different viewpoints around this issue.
It sounds like you are doing an INCREDIBLE job of taking care of your daughter and handling this diagnosis. All the things you’re doing (tossing food, moving gluten foods to bottom of pantry etc) are amazing! Absolutely amazing.
Some favorite gluten free foods: Russo’s frozen pizzas, San-J Tamari Gluten Free Soy Sauce, Pamela’s chocolate cake mix (it tastes just like normal cake! my sister made my birthday cake out of it last year), Pamela’s cornbread mix, Bob’s Red Mill 1 to 1 baking flour.
I really hope this comment was not overwhelming! There’s a lot of information out there and good news is you guys can do this. You will get the hang of it!! Good luck!
I follow http://www.bakerita.com/ – lots of gluten free goodies on this site!
Iowa Girl Eats is a great blog on gluten free eating.
http://iowagirleats.com/
Oh no! This has got to be a challenge for a little one.
I was diagnosed with celiac as an adult 6 years ago. The transition was tough, and it has taken all of those years for my family to adapt. Our home is now entirely gluten free, and I can honestly say that we are all perfectly content.
Holidays are one of the most difficult times of year, because I have plenty of memories connected to my grandmother’s nut roll, special cakes, and cookies. Many a tear was shed as we tried making gluten free versions of old favorites. What we’ve ended up doing is making some of GF treats ones that we enjoy at the holidays, so that we have new memories connected to foods.
Over the years, GF recipes have become easier to find. I can recommend a few cookbooks, starting with “Gluten Free Wish List” and “Gluten Free Baking for the Holidays,” both by Jeanne Sauvage. These books have given us five-star recipes for things that I still miss, like donuts, ramen, and fried chicken.
And the best chocolate chip cookies: https://glutenfreegirl.com/2009/04/david-leites-chocolate-chip-cookies-gluten-free/
I hope this gives you some encouragement! Best of luck!