talking about celiac disease

This is my guy. He’s the best thing I’ve done yet. And, he is special. He’s special because he’s one of the millions who has been diagnosed with celiac disease.

one special kid

one special kid

May just happens to be National Celiac Disease Awareness Month. Last May, I wouldn’t have known that. I mean, I knew people at the time that were dealing with celiac but it was definitely not on my radar as a concern.

I’ve written about how we learned of Connor’s diagnosis last October, but I wanted to spend a bit more time talking about the disease in general. I mean, we’re just about seven months into the major diet shift and guess what?! We are healthy. With that, a little bit about what celiac means for us.

Connor now tells everyone (proudly) he is “gluten free”.

Gluten is an evil little thing (for some). It’s a protein that can be found in wheat, rye, barley and oats. And, for those living with celiac, gluten attacks these little hairs, or villi, in their intestinal tract. The thing about those villi is that they absorb the nutrients from our food, and without those, well, our bodies become susceptible to a whole host of other rotten things.

Ever since Connor was a little dude, he’s had stomach aches here and there. He also struggled with not being able to “go”. The latter part is a bit atypical of the common Celiac kid, which is why he probably wasn’t considered a candidate earlier on.

What struck me last summer was that he was not only having that one issue, but he was also telling me he was tasting acid in his throat. Light.bulb. We got him in to his doctor and she ordered an x-ray of his tummy along with a blood test to determine if he was sensitive to gluten. The x-ray showed that he was definitely having some trouble, but the blood test also came back positive.

And then, as I wrote before, in October, he underwent an endoscopy so they could get a biopsy to determine if he did, in fact, have celiac.

At first, he was definitely bummed about things like cereal and bread and mac n’ cheese, but we learned quickly that there were alternatives. Yay!

The best part has been the past few months where I’ve noticed CJ really accepts and lives the gluten-free life. He alerts people to the fact that he needs to avoid gluten and he thinks before putting something in his mouth because likely, at this point, he would not feel so hot if he happened to consume the nasty g-word. And thank goodness in January, for the very first time, he told me unprompted that he feels so much better eating gluten free and my heart soared.

Shopping is overwhelming … at first

I probably went nuts a bit too quickly (as I typically do) and bought gluten free everything because I wanted to be safe. I’d cleaned out my pantry the day we found out and felt like I had nothing for CJ to eat. I also bought a new toaster as the dietitian suggested. She advised that pots and pans and utensils and things (as long as they were washed in hot enough water) wouldn’t need to be replaced. Phew.

If I were to do it a bit differently, I would have bought one of a couple of things so Connor could try and see what he liked. Instead of rice pasta, for instance, he prefers corn (I highly recommend Trader Joe’s corn pasta … cheap and delicious). He really loves rice, so that’s been a helpful alternative and it’s naturally gluten free.

I tried a few organic cereals and in addition to being expensive, they also tasted like cardboard. Now we get our fill of Chex (Honey Nut and Cinnamon varieties, FTW!), Gluten Free Rice Krispies and Fruity Pebbles. I try to go light on the Pebbles given they are basically colored pieces of sugar.

As for bread … we like Udi’s bread (found in your grocer’s freezer section), and it’s delicious for a grilled cheese but I’ve finally accepted that pulling it out of the freezer first thing in the morning and allowing it to thaw does not work for a lunch sandwich five hours later. He now will happily eat meat wrapped around cheese for me. Bread, I would say, has been the toughest thing for us so we keep testing different brands and seeing what works. I need to just break down and buy a bread maker. I’m sure I’d have a happy little bread-eater on my hands again if I could figure out the right mix.

The thing for many that is awesome when it comes to living a gluten-free lifestyle is that if you eat clean, your’e golden. Fruits and veggies and most meats are completely free of gluten naturally.

After crying the first few times I was at the grocery store, it’s become much easier and almost natural for us to completely skip the bread aisle. And other products. Don’t forget gluten can be hidden in anything so it’s helpful to read all labels.

There are tons and tons of resources

Given that the diagnosis of celiac is on a major upswing, there are tons and tons of resources and manufacturers committed to protecting that population. Udi’s not only makes great bread, but they have a great community where people can share about understanding the gluten-free life, tips and recipes. There are also subscription-based magazines like Living Without if you’re into the whole “snail mail” thing.

But there are also a great number of advocates. One of my favorites is Rachel Martin over at Finding Joy. Her son has celiac and her words inspired this post. She is all over the subject of celiac disease and is actually quite active over at the Udi’s community.

And there are friends. There are friends and family who face celiac and we can all share and talk to each other about how to deal. It’s not “easy,” but we’re doing it and I have a pretty darn picky kid. But I love him. And I’ll do whatever is required to ensure he lives a long, happy and healthy life.

I’ll probably write another post here soon about some of the other things we’ve learned but figured I bored y’all enough for now. Thanks for learning with us.

2 thoughts on “talking about celiac disease

  1. I am glad to hear you are adjusting well to gluten free living. It took my parents about a year. My dad really likes Kinnikinnick bread for sandwiches and he gets it at Smart Choice Market in Byron Center. He has also found that Red Robin is very good about accommodating a gluten free diet.

    • thanks for the tip, jessica! yeah, we actually just ate at red robin and i was super-impressed. i hope to do a follow-up with some more about that soon. 🙂 hope you’re doing well!

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