My Celiac Story (so far…)

Last month I had the honor of speaking at the Arizona East Valley Celiac Support Group meeting. They have had healthcare professionals come in and speak on nutrition and celiac disease in the past, but I was there for another reason. I was there to share my celiac story. Since May is Celiac Awareness Month, I thought I would share my story with you too. Because I’ve found out something over the past three years. Sharing your story is important. Not feeling alone is important. Sharing your struggles, fears, hopes and triumphs is important.

This is my celiac story (so far…)

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My name is Alysa Bajenaru. I am a registered dietitian, blogger, photographer, baseball wife, and mom of two. My daughter Leila is 5 and my son Joe will be 7 on Sunday.

I also have celiac disease.

I did my dietetic training at the University of Oklahoma from 2000-2002. At the time, I was taught that celiac disease was rare. The only other time I remember hearing about it was when I was a waitress at Chili’s. A woman came in and before she ordered, she handed me a laminated card explaining what foods she needed to avoid because of celiac disease. She ordered a salad without croutons. I remember bringing the salad out without checking first, and it had croutons on it. She politely asked me to take it back and bring her a NEW salad, not just to pick the croutons off. I remember getting into an argument with the cook who just wanted to take them off. I told him NO, I think she can get really sick! Now I’m so glad I stuck up for her, even thought I didn’t really understand it at the time.

Fast forward to 2009 when I had my daughter. A few months after having her, I started having quite a bit of abdominal pain. When I weaned her after 12 months, my symptoms skyrocketed. Painful bloating, fatigue, stomach pain, bladder pain, headaches, acne, brain fog, hair falling out. At first I was misdiagnosed as having interstitial cystitis. The medicine for that was intense, so I wanted a second opinion. Two years after my symptoms started, I went to a GI doctor who tested me for celiac disease. The blood test came back positive, so we scheduled an endoscopy. I had to wait 5 weeks and continue eating the poison that was making me feel like a narcoleptic who had fireworks in her belly. I remember eating a sandwich and a beer at dinner one night and literally having to hold my eyelids open with my fingers afterwards. So when the official diagnosis came, I was ecstatic. I celebrated. I wrote a post about how this was a GREAT thing. I finally knew what was wrong with me, and I could cure it with food. YAHOO!

I asked the doctor if I needed any follow up visits, and she said, “No, just eat gluten-free and you will be fine!”

And I was…for a few months anyways.  There was a brief honeymoon period where my body was just thankful not to have gluten attacking it anymore. But soon that gave way to different symptoms as my body tried to sort itself out. I had numbness and tingling in my head, neck, arms and back. My feet and legs would go numb from time to time. My back went out completely, I could barely move. My body was ANGRY. And so was I.

On that initial blog post where I asked people to celebrate with me, a certain blogger named “Gluten Dude” left a comment gently telling me “good luck” instead of “congratulations”, and warning me that a long road may be ahead. I was all, psh whatever, NOT ME. I’ve got this.

My next post, a few months later was titled “Dude, this is harder than I thought.” He was right. At this point I was feeling anger, frustration, grief, and a lot of social anxiety. Every time I was “glutened” I spiraled down into a depressed state. I made lots of mistakes. I was afraid to speak up for myself at restaurants. I didn’t read food labels closely enough. I didn’t separate my kitchen well enough.

See, my doctor telling me that I would be fine if I just went gluten-free, and even my RD training had left out the reality of just how hard it is to live with celiac disease. I didn’t know about cross contamination, shared facilities, rude waiters, snide comments at baby showers…no one taught me about these things. I had to learn them the hard way.

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It’s been almost 3 years now, and I feel like I’m in a much better place.

So what has brought me from this time of anger and grief to a place of hope and healing? That is what I have been thinking about lately. And I came up with 3 things: Community, Time, and Healing

Community – I didn’t know it at the time, but Gluten Dude would become one of my best celiac friends, my “GFF” (and yes I know his real name, but I’m not allowed to share it). Erica Dermer and Ken Scheer took me under their gluten-free wings and held my hand locally. They gave me a shoulder to cry on, and answered every question I had (there were a lot!). Sharing my story on my blog has also been a huge source of healing for me. (And for others.) My post titled “What I Want You To Know About Celiac Disease” (which is kind of a raw rant I wrote after getting glutened one day) gets huge traffic every day and comments from people thanking me for sharing what they are feeling – they feel less alone knowing they aren’t the only ones to go through this. So I would encourage you to share your story – you don’t need a platform to do it, just share it. Help others feel normal. When you have celiac disease, feeling normal is a big thing.

Time – Healing takes time. I wish someone had told me that in the beginning. I think I thought it would be instant. Take away the gluten, and you’re good to go. In reality, it took over 2 years for me to start feeling good again. And those 2 years were very painful. Even now I still have setbacks, but it’s getting better. This disease never goes away, but it does get better. And as it gets better, I am able to focus on other things. To realize that I am more than this disease. I am Alysa, dietitian, blogger, photographer, wife, mom, friend…and I happen to have celiac disease.

Healing – Like I said, healing takes time. And the setbacks are more than frustrating. Sometimes it feels like you will never crawl out of this pit. When you’re suffering, reach out to someone. Don’t put on a face and minimize what you are going through by saying something like, “Well, I shouldn’t complain, at least it’s not _____ fill in in the blank (i.e.; cancer).” Take time to work through your grief. Healing only comes when you are honest with yourself, and with others.

So now, I share my story, I educate other health professionals about the realities of celiac disease, and I use my voice to advocate for you and for me.

Honestly, I wish I didn’t have this disease. But I’m thankful for it just the same. I’m thankful for the relationships I have because of it, and for the opportunity to use my voice to help others.

Thank you.