Celiac Awareness Month is May.
Officially a year has passed since I was diagnosed with celiac disease. I am not going to sugarcoat it, the past year has been rough. I struggled to adjust to a new diet. Giving up gluten is hard. Gluten is in more than you can even imagine. Things you wouldn’t even think of. I had to spend more time reading every single label in the grocery store. Grocery shopping, a chore I hate, suddenly took twice as long. I had to give up all my favorite fast foods. No more McDonalds. No more french fries almost anywhere. I started stuffing my face with dark chocolate and Talenti. I couldn’t stop shoveling in the sugar trying to appease my loss.
I gained weight. I saw the scale go up nine pounds by August. Nine pounds in four months. I knew weight gain was probable but I wasn’t mentally prepared to gain so much in such a short time.
I fell into a depression. Eventually, I stopped working out. It all seemed too much. I didn’t want to run. I just wanted to sink into the couch and never leave. I was wallowing in self-pity. I knew I needed to pull myself out but I couldn’t.
Of course, I was thankful to have finally gotten a diagnosis. I felt better almost instantly. The bloating and brain fog were gone. I stopped getting migraines. I hadn’t felt “right” for many years. I had almost forgotten what it felt like. It was amazing. I didn’t know I could physically feel this good. I just had to get back to feeling mentally “right”.
I went through all the stages of grief: denial, anger, bargaining, depression, and acceptance. Not necessarily in that order but they all came around. I still get angry now and then but not like I was in the first few months. I have *mostly* accepted it. I have accepted the diagnosis and not having gluten for the rest of my life but I haven’t fully accepted that others don’t have to make gluten free options. I still want McDonalds to be gluten free. I still want places to put the burger on the bun for me. I am slowly accepting that places don’t get celiac and gluten but I am hopeful.
I hope that my voice can bring about change. That restaurants and servers will understand this isn’t an allergy and proper prep is important. Cross contamination is a big deal. You may not see it but I will be affected. Celiac disease is an invisible illness. I won’t go into anaphylactic shock like a peanut allergy. You may never know that your carelessness made me so bloated I had to unbutton my pants at a baseball game. That I woke up the next day with a migraine. That I struggled to stay awake for the rest of the weekend. That I couldn’t get anything done for a few days. Celiac disease does not have a visible reaction. I suffer in silence.
I will speak for those who struggle to speak for themselves. I want to be the voice of celiac disease because it is important for people and places to know it isn’t an allergy. It isn’t being a hipster. It isn’t about a diet. Or trying to lose weight. It is about my health. My life.
May is celiac awareness month and I hope that my blog has made you aware of an often misunderstood auto-immune disease. If you have any questions, please feel free to ask me. I try to be as open as possible about my diagnosis and struggle.
I included the last link because for 10+ I thought I had IBS. I was given that diagnosis while I was in college but never had any testing. I finally had enough of the symptoms and wanted to know if it was something more or if I should adjust my diet. My symptoms started long before that but I just thought it was normal. I had no clue about celiac disease or even what gluten was!