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.

2015-08-06 12.47.00

Gluten free grilled cheese & fries from Jewel’s, a local all gf place.

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.

Helpful Links:
What is celiac disease?
Symptoms Checklist
7 Diseases Doctors Miss

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!

Categories: Gluten Free

Jenna

Jenna Volden has a degree in business and has spent the last 10 plus years working for others. She believes it is time to start her own photography and writing business. She enjoys running, coffee and helping others achieve their goals. Gluten-free foods are a lifestyle, not a choice, for her due to celiac disease. She is currently based in Phoenix, Arizona.