Eight years ago, my husband was coaching in the Arizona League (rookie ball). We lived in Arizona full time, and our kids loved running around at Dad’s games on the grass of the backfields of Salt River.

Life was good…except I was sick…and we didn’t know why.

My hair was falling out, I was so bloated I looked pregnant, my stomach was always in knots, and I couldn’t keep my eyes open after a meal. The pain was horrible, but not being able to stay awake when I had two small children was terrifying.

I bounced around from doctor to doctor for almost a year until someone finally sent me to a gastroenterologist. On August 11, 2011 I was officially diagnosed with Celiac Disease.

At first I was thrilled to finally have a name and a plan for my pain. “Just eat gluten-free and you’ll be fine!” As a dietitian, I felt like this would be an easy fix. I knew all about celiac disease, how hard could it be?

The first month was what I would call a honeymoon period. Cutting out gluten gave my body the break it had been begging for, and I felt amazing. Then reality set in when I realized living with celiac disease is harder than it looks, and my body would need extensive time to heal.

Here are a few things that surprised me about living with celiac disease:

1. Cross contamination is a major issue. Eating at a restaurant or at a friend’s house is tricky, and I have to ask way more questions than I would like to.

2. Every time I feel sick, I wonder if I accidentally ingested gluten. What did I eat? Where did I go? Is this celiac or something else?

3. Grocery shopping takes foreverrrrrrrrrr because even when I buy the same products over and over, labels change and I have to scrutinize everything.

4. Stomach issues are a big part of celiac disease, but what hits me the hardest is how much gluten affects my brain and nervous system. The last time I had a major incident (restaurant “gf” pizza) I had a hard time speaking, walking, and driving for days. My anxiety also goes through the roof and can end up in a full panic attack. I feel like an alien in my own body.

These days, I’ve reached a level of acceptance in realizing that I’ll have ups and downs, sometimes I’ll feel great, sometimes I won’t.

I do my best to take advantage of the periods when I have tons of energy and feel like a normal human by exercising regularly and working hard.

I will never not be grateful for healthy days.

But I’ve also learned to give myself grace when I feel like crap. I don’t beat myself up when I can’t work out. I let myself rest and heal when I need to.

As far as baseball life goes, we always travel with a full set of kitchen stuff. I bring my own crockpot, toaster, cutting boards, anything that can’t be shared with gluten. It makes packing a little harder, but it keeps me safe. I do my best to bring snacks with me everywhere, just in case. I’ve become an expert on sneaking food into stadiums when I need to.

If I’m invited to dinner, I scout out the restaurant in advance and pre-eat if it’s not going to be safe for me. And if someone invites me to their home, I either bring my own food or offer to help them cook. Honestly, I just want to be invited, whether I can eat the food or not!

Why am I sharing all of this? May is Celiac Disease Awareness Month, and it affects at least 3 million people in the United States. For a long time celiac has been underdiagnosed, but even as we play catch up, too many doctors are giving bad advice about testing.

If you think you might have celiac disease, MAKE SURE you push for a blood test BEFORE going gluten free. If you go gluten free first, the testing won’t be accurate and you might be doing damage to your body over the long term.

To find out more about celiac disease, visit the University of Chicago Celiac Disease Center Website. I also love this infographic from Gluten Dude that points out all the symptoms (there are so many!). If you have any questions, please let me know!