What I want you to know about living with Celiac disease

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Alysa Bajenaru, RD.

I want you to know that I’m not a picky eater, I’m not on a fad diet, I’m not a health freak.

I want you to know that I feel like the biggest pain in the butt when I sit down at your table and have to go through my spiel. I want you to know that I see your eyes roll when I use the term gluten-free, and it makes me nervous for my health.

I want you to know that gluten exposure turns me into a different person. Like a Dr. Jekyll and Mr. Hyde kind of a change. I go from feeling like a normal happy human to, in an instant, feeling like I want to punch the world in the face. I want you to know that I get anxious, depressed, frustrated, and short-tempered when gluten enters my body. I try to stay away from my family as much as possible so I don’t say anything I will later regret, although it inevitably happens.

I want you to know that this isn’t an “upset tummy” disease. All celiacs are different, and my symptoms affect my entire body. First it feels like icy fingers are fiddling with my brain. Then my stomach is a mess and fatigue hits me like a truck. I get hot flashes, mood swings, bladder pain, aching joints, and headaches. The worst part lasts 1-2 weeks, and I don’t feel like myself again for at least a month. Sometimes I think I’m better then BAM, I’m driving with my kids in the car and I can’t focus my eyes or remember where I’m going. I want you to know it’s scary.

I want you to know that I’m sick of talking about celiac disease. But if we’re going to hang out, it’s going to come up. Social interactions always seem to involve food, don’t they?

I want you to know that nothing about this is easy. I thought being a dietitian would make the transition smoother. It hasn’t. I want all health care providers to hear this: Stop telling your newly diagnosed celiac patients that treating the disease is easy. IT’S NOT. And stop calling celiac disease “trendy”. It’s like a slap in the face.

I want you to know that as much as it helps to have awareness and thousands of gluten-free options these days, those things hurt us too. Food companies and restaurants are cranking out “gluten-free” items as fast as they can to cash in on the fad, and most of them aren’t doing it responsibly. Then we get sick.

I want you to know that I have to think about celiac disease all the freaking time. Every time I put food or drink in my mouth, lotion on my skin, gloss on my lips. Every time I serve my kids pizza at a party and have to scrub my hands. Every time someone asks if I want to meet for lunch.

I want you to know that as much as I hate this disease, I’m thankful to know the cause of my health problems. I’m thankful to have a name for it. I want you to know that there is an incredible celiac community out there full of beautiful humans who love and support each other. I don’t know where I would be without them.

I want you to know that if you suspect you might have celiac disease, you need to get tested before going gluten-free. Don’t let anyone tell you otherwise.

I want you to know that you know someone with celiac disease, and they need your love and understanding. This is harder than it looks.