13 Sep My First Year With Celiac Disease
Today is celiac disease awareness day, so I’m sharing my story to help raise awareness.
Before I get into it, if you’re interested in the products I purchased for my celiac lifestyle, jump to those links here. Disclaimer, I do receive a small commission on items sold on our Amazon shop. Also, I’m not a doctor and nothing in this blog is intended to be medical advice. This is simply my story.
Now back to our regularly scheduled program.
When Life Throws You a Curveball
One thing that’s guaranteed, is life will bring you changes. You can count on it. And one year ago, a slew of changes came my way. As a professional organizer, I help people through life’s transitions everyday because changes in your life cause changes in your stuff. So I have years of experience navigating life’s transitions, but somehow, when it’s your own life, it hits differently.
Celiac disease is an autoimmune disease that occurs in genetically predisposed people, where eating gluten (found in wheat, barley and rye) causes damage to the small intestine. “It is estimated to affect 1 in 100 people worldwide, but only about 30% are properly diagnosed” (Celiac Disease Foundation).
A year ago, celiac disease was a term I may have heard bounced around, here and there. But I had no idea what it actually was. I knew it had something to do with gluten and that’s about it. I’ve always eaten bread, pasta and anything with gluten with no problems, or so I thought. Apparently, one third of all people with celiac disease have what’s known as silent celiac disease. That means, outwardly, they show no symptoms. They don’t react to gluten or get sick from it, but on the inside of their bodies, it’s wreaking havoc. I fall into that category. Silent celiac.
Since I have no symptoms, you may wonder how I discovered this diagnosis. The answer is…by accident. I went into the ER for chest pain and they did some diagnostic tests to figure out if my pain was a cardiac or digestive issue. It ended up being cardiac, but in the process they discovered some inflammation. The GI doctor on call did an endoscopy and said he saw some inflammation and mild issues and suggested I get tested for celiac. He said “I highly doubt you have it. It’s very rare. But when I see this slight inflammation I always suggest getting tested.” So I did. Oh, and about the cardiac issue… that’s a story for another time. But I’ll just say that today, I’m healed and fine.
It Can’t Be Positive
When I took the celiac antibody test I was fully expecting to get a negative result. As I said earlier, I had never had a reaction to eating gluten that I knew of. That’s why I was shocked when it came back positive. Not borderline, but like, no question, you have celiac disease. Despite this positive result and the endoscopy report with interstitial damage, I proceeded to try everything I could to get out of this diagnosis. I believe that’s what they call denial. One of the stages of grief. I mean, how could this be? How could I have something like this and have no idea? So, I went to 4 doctors, got blood tests and genetic tests and had many, many phone calls and appointments. And every single test came back with a resounding “Laura – you have celiac disease!”
“Just Go Gluten-Free”
My primary care doctor said, it’s very manageable, you just have to keep a gluten free diet for life. Even though I was in denial, I’m a rule follower, so I followed orders and immediately went gluten free. But once I started down the GF road I quickly discovered exactly what a strict no gluten lifestyle looks like. And boy, was it different from the simple instructions of “just follow a gluten free diet.” The changes I had to make began sweeping over me like waves of sadness and grief. (Keep reading, I promise it gets better.)
One Step at a Time
There were a whole slew of things I didn’t think about or know to think about at first. But these little points started to poke their annoying head in. Like, what is cross contamination? How was I going to eat out? How was I going to travel? Go to a friend’s place for dinner? What about a birthday party, or any party for that matter? Can I kiss my hubby if he eats gluten? Go into a bakery? Does my makeup need to be GF? And on and on. As I learned more, I discovered all the sneaky places gluten hides. All the ingredients that may be a danger to me, that could cause internal damage to my body…and it got overwhelming, really fast.
I knew I needed a strategy to handle all the changes coming at me. Because while I’m fine now, I was simultaneously handling a cardiac issue. So, I took the approach I use with my clients. Take one step at a time. Start small. Start simply and then get more detailed as we go along.
Make a Plan
First I read as much about celiac disease as possible. I joined Facebook groups (which are amazing resources filled with experienced people navigating this disease), I called organizations and friends of friends who were also celiac. I kept my food simple at first, fruits and veggies, meats and certified gluten free snacks only. Next, I cut out artificial sweeteners and foods with lots of chemicals to give my gut a chance to heal. Then I got to work doing the fun part of this adventure, reorganizing my home. Luckily, I have just a little experience doing that!
Out with the Old
First, I cleaned out my entire pantry, spices, oils, refrigerator, you name it. If it contained gluten, we gave it away. In fact, if it was opened or there was any possibility of cross contamination (a phrase I quickly became familiar with) we gave it away. We got rid of cutting boards, cooking utensils. Non-stick pots and pans, our toaster oven and anything that we used in the kitchen that could have gluten in it, that couldn’t be cleaned out. Because there are many surfaces that you can’t clean the gluten off of. It was all new to me, but I was advised by professionals and knew it was my health on the line.
In with the New
Then I researched brands that were gluten free. Each time I went to the store, I spent time in a new section researching products. Luckily we have 5 different grocery stores near us and I live in LA. So there are lots of resources to purchase gluten free food.
I replaced plastic containers that contained flour and created a fresh new GF pantry and kitchen. I can still decant my food into containers because we keep a GF household. When I go anywhere, traveling, work or pretty much anytime I leave the house I bring food with me. Most of the time I don’t need it, but in a pinch, I’ll have food that’s safe for me to eat. When we travel I always have a packaged back up meal, just in case we get delayed and won’t have access to buying food. It’s come in handy a few times. Airports and airplanes are the worst places to find a celiac safe GF meal. These days, I don’t leave my house without these handy gluten detectors in my purse! These strategies help me feel comfortable and stress-free as I navigate this new lifestyle.
The Products Part
I have purchased a few great items that help me eat celiac safe gluten free when I go to friends houses and parties. I have my travel strategies down and I’m sure over time I will feel less left out of dining experiences. I’ve got my GF dining list which is growing all the time. I use the app Find Me Gluten free to find new restaurants and follow some great bloggers like Gluten Free Globe Trotter and many others.
These things are amazing! I’m not sure what they’re made of but you can safely toast bread in these pouches and they come up gloriously crunchy!! I highly recommend. Great to travel with if you’re visiting with friends and family.
Condiments are one of those sneaky places gluten hides. I got these cute Heinz bottles that fit in my purse. I bring my own salad dressing to restaurants and my own ketchup for burgers.
My hubby bought me this casserole carrier that looks nice and easily holds enough food for us when we go to parties. If we need to bring our own dinner or when we travel I fill it with gluten free snacks and back up meals.
I love these Tellfresh containers by Decor. They come in lots of sizes, they’re low profile meaning they have slim sides so there’s no wasted space. And the lid fits super snuggly so we won’t have any leaks!
Those are my faves.
One year ago I had no idea what celiac disease was. Today, that is not the case. I’ve completely changed my lifestyle to live with this disease. Adapting to this condition has been a journey, and I continue to gain knowledge with each passing day. Just as we all face significant life changes that seem to upend our worlds, let’s approach them with the power of organization and strategic thinking. Remember, amidst it all, be kind to yourself. We’ve got this!
Don’t forget to checkout our latest blog to learn all of our tips and tricks for back-to-school morning routines and getting the entire family out the door!