Life Update: I Was Diagnosed With Celiac Disease
Hi there!
It’s been a while since I’ve added a new post around here…and even longer since I wrote a personal post. Those don’t quite fit with the algorithm, do they? But a lot has happened over the last year since I was posting about Christmas cookies and looking forward to 2023. I think about the journey - both mentally and physically - of the last year and it’s sort of hard to believe how much has changed.
My story and journey to diagnosis actually starts with my cousin, Katie. Well, she is my cousin’s wife. But in our family, cousins by marriage are cousins for life. In October 2022, our family was turned upside down when we learned that Katie was diagnosed with pancreatic cancer at 38 years old. After a fierce battle, she tragically - and still unbelievably - passed away in July 2023.
It’s honestly hard to even write those words.
It still does not compute that she is gone. I cannot comprehend that her life was cut short, that her bright light and warm, outgoing energy is no longer here. The grief of her illness and passing hits me hard and often, usually in moments when I least expect it.
When Katie was diagnosed, she told me that the most important thing she did was to advocate for her health and to get to the bottom of what was going on with a persistent back ache that wouldn’t quit.
Katie’s untimely passing has taught me to not take one day, one moment for granted. To make all the memories while we can, to look back and have no regrets. To be brave, even when I’m shaking with fear. And yes…she inspired me to deal with my own lingering health issues that had been quietly bothering me for years. The issues that I had sort of mentioned in my yearly visits, but for which I never pushed hard enough to get answers. With Katie’s bravery inspiring me along the way, it was time to take control of my own health.
A Gallbladder at the End of its Life
Let’s start at the beginning, which is not, in fact, my celiac diagnosis.
In early 2023, I went to my GP with a list of issues…I made a note in my phone so that I wouldn’t forget anything (highly recommend doing this). My stomach hurt basically all the time and I couldn’t figure out why, no matter what food I eliminated. It was to the point that it could ruin an entire day - days - if I ate something that didn’t sit right. My sinuses bothered me pretty much every day. My mental health was suffering as my anxiety skyrocketed and I didn’t know how to control it. My doctor started by doing some additional bloodwork and tests to check for infection and, among other things, celiac disease.
I should interject here that I did not think that gluten was the culprit for my health issues (I had tried that in my elimination dieting, to no success), but I was on board to check the boxes. When my bloodwork came back indicating presence of celiac disease, I was shocked. She referred me to a gastroenterologist, who ordered every test in the book. He noted that I could have celiac disease and that could also not be what was making me feel so bad. He ordered an endoscopy, a colonoscopy and an ultrasound of my gallbladder, which I thought was a little egregious. In all of my Googling for answers to my stomachaches, not once did gallbladder or gallstones come up as something to consider.
Imagine my surprise when I received a call a few days later telling me that the ultrasound showed numerous gallstones and my symptoms were consistent with this finding. This is a relatively common issue and one that is more prominent in women…who knew?! There is only one way to eliminate the issue - surgery to remove the gallbladder. So in June, I met with a surgeon, who said that my gallbladder ‘was at the end of its life’ and had to come out. A week later, I had laparoscopic surgery to get that baby out. I felt like a new person…no more stomachaches, no more anxiety around food ruining my weekend. I could eat again! Hooray!
Rachel Goes Gluten Free
Feeling like a million bucks, I still had the celiac bloodwork to deal with. In order to diagnose celiac, an endoscopy is required to view the stomach and take a biopsy. I pushed this off until August in order to fully recover from the gallbladder surgery and I enjoyed a gluten-filled summer. So August came and I did the double dip - an endoscopy and colonoscopy, because why not, right? My colonoscopy was relatively clear, aside from some polyps that he removed (just an aside here to say if you are putting off or dreading a colonoscopy…don’t. I did it, you can do it. It’s really not a big deal). Immediately following the endoscopy, the doctor told me that he could tell based on how my stomach looked, that I did have celiac and the biopsy would confirm it.
So a week later, I received the official word. I was diagnosed with celiac disease, which meant no more gluten for this girl. If you’re curious to learn more, you can read about celiac here.
I’m not going to lie, friend. I cried. It may seem silly to cry over a completely treatable disease, but so much of my life is about food…cooking, baking, searching for the next great food find. It’s part of my identity and who I am - the woman who eats all the things. The thought of eliminating such a key element from my everyday life had me feeling daunted and downright depressed. And as I started to learn how to live a gluten free life with celiac disease, it was harder than I expected. Things I did not think of, like sharing a toaster or cutting board with the rest of my family. Making our kitchen as gluten free as possible, without depriving my kids of food they love.
I know this is not the worst diagnosis…this is totally livable and ok. But, it felt hard. And tbh, it still does!
So what does this mean?
Since the end of August, I’ve been living that gluten free life. I’ve cut out all gluten, which means no wheat, rye, barley or malt.
Cooking at home has been a breeze. I love rice bowls and GF pasta is a no brainer. Give me a ribeye any day of the week. I live for potatoes and ice cream.
The hard part? Bread. Good desserts. Going to restaurants. Thanksgiving stuffing. My aunt’s famous chocolate chip cookies. The dreaded cross-contamination from a shared fryer.
I’m still learning what this means for my overall health going forward; what vitamins and supplements I will need, how to reduce the risk of any other autoimmune disorders popping up (it’s more common to develop additional autoimmune disorders once you’ve been diagnosed with one…can you believe that?). But, it does mean that all of my cooking and baking are now gluten free. And so you’ll be seeing a lot of that around here going forward. I’m downright determined to make gluten free eating just as good as gluten-filled eating. So if you’re gluten free, gluten free curious or just love good recipes, I hope you’ll stick around and see what I’ve got cooking up. Thanks for being here, it means the world to me :)
