May is Celiac Awareness Month. What’s it like to Live with Celiac Disease?

May is celiac awareness month. As a gluten-free energy bar company, pretty much every month is celiac awareness month here, but we want to help spread the word.  

Celiac disease is an immune reaction to consuming gluten, a protein found in wheat. Check out our blog post specifically on gluten to learn more about it. Consuming gluten triggers a response in people with this disease. It damages their small intestine’s lining over time and prevents the body from absorbing nutrients. Celiac disease can manifest itself in many ways. The intestinal damage that occurs when eating gluten can cause an individual with this disease to experience anything from fatigue and irritability to weight loss and infertility as well as a variety of other uncomfortable and painful side effects.

Celiac disease can develop at any time, and there’s no cure for it. However, following a gluten-free diet can help those affected to avoid symptoms and heal intestinal damage. 

We talked to an individual who developed celiac disease in her early 20’s and has been living with it for the last four years. She spent the first year undiagnosed and unaware of what was wrong. Once she realized that feeling awful was her normal state of being, she knew she had to change something. In the last three years, she’s become a professional gluten dodger. She vets restaurants and she brings her own pans when traveling. She even knows to avoid pre-packaged shredded cheese (because flour is often used to keep the cheese from clumping). For celiac awareness month, she was kind enough to share some of her experience with us:Gluten, Gluten Free, Celiac, Celiac Disease, May, BumbleBar, JunoBar, Spokane, Washington

“When I was told I had celiac disease, the doctor used a metaphor that I feel explains my condition well: it’s like a switch in your genes and once something flips it, or triggers it, you can’t turn it off again.”

What about your dietary needs or condition do you have to repeat the most often?

“Probably about how serious celiac is, and that it’s not an allergy but a genetic autoimmune disorder.  I don’t always get into the second part of the last sentence but definitely the first part.  I think it is because people have been eating gluten-free as a choice lately and don’t think of it as an actual disease that can really hurt me.” 

What are people the most surprised to hear about your dietary restrictions? 

“People are most surprised to hear about cross-contamination. So, I explain to them that having food items with gluten touch my food or plate or knife, etc. can hurt me just as much as eating gluten.”

What do you find is the most common misconception about people with celiac disease?

“The most common misconceptions are probably that I am either over-reacting, eating like this for fun, or will have an immediate physical response to eating gluten. However, there are people out there with celiac disease who do have immediate reactions. Everyone is different.”

What are some things you’d rather people didn’t say to you in regards to celiacs and/or gluten?

“It’s frustrating when people try to give me advice. I have been doing this for years now. I know what I am doing.  Please don’t tell me it’s not that hard. I know exactly how hard it is. I also don’t care for being told that it isn’t actually healthy to avoid gluten. For me, it actually is healthier.”

What’s the most important thing to remember when being a friend to someone with celiac disease?

“I would say you don’t have to overly sensitive about it, but let your friends with celiac be a part of the restaurant choosing process, and if you’re throwing a party it’s nice, but not necessary, to have an option for them.”

We think we will go one step further than our friend here and say that it is kind and necessary to provide gluten-free options when hosting friends with celiac disease. Observing dietary restrictions (and preferences) is a way of showing support and making people feel loved and included. If you’re looking for gluten-free snacks for yourself or friends in your life who have celiac disease check out our Chocolate Crisp BumbleBar bar of the month sale. Our facilities, as well as all the bars we produce here, are gluten-free, so if you’re not much of a chocolate person try our Original Peanut BumbleBars, Mixed Nut Medley BumbleBars, or any one of our 13 flavors!

While our friend has mastered managing her gluten-free life, she hasn’t given up on a cure.

I have high hopes for genetic therapy in the future, fingers crossed I’ll eat sourdough again.

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