Celiac Disease

Celiac Disease and Anxiety

“Do you know what it’s like to be alone?
Truly alone?
You think you’re alone, but then the honeymoon ends…
Anxiety comes knocking at your door…
He’s an welcome guest who won’t take no for an answer, but barges into your solitude…
Your palms sweat. Your pulse quickens. The tension thickens…
You can’t breathe…
You will Anxiety to stop, to leave, but it’s too late. He’s in charge now…
Worry, fear, nervousness…endless…
You try to take a deep breath, but the breaths just come too quickly…
Your heart thumps against your chest so loudly that surely the whole world can hear…
You try to form words, but only crazy words want to come out…
You tell yourself you’re fine, but Anxiety just laughs in your face…
The pressure builds and you know this must end soon…
You drop to your knees and cry out. You lift your hands to the heavens… Anxiety is thrown against the wall and told to leave…Now…
Anxiety slowly turns to you with a crooked smile and backs out the door…
You breathe a sigh of relief and feel the weight lift, but you know…you know… He’ll be back…”

I wrote that poem to demonstrate how anxiety manifests itself in my life. One source of my anxiety comes from my celiac disease. What’s the connection between celiac disease and anxiety? Once diagnosed as a celiac, the course of treatment is to start following a strict, gluten free diet. That may sound easy enough, but the truth is that gluten is EVERYWHERE. Gluten acts as a binding agent, like glue, and goes beyond the common foods of breads, cookies, cake, etc.

Gluten is in toothpaste. In lipstick. In products used at the dentist office. It’s in prescriptions. Even if a food or product doesn’t have gluten, it can easily be ruined by a cross-contamined environment.

Some foods have simple ingredients and are gluten free, but were contaminated during the manufacturing process, due to shared lines and facilities. 

Growing up, I didn’t get too anxious about my celiac disease. I have always been a worrier in general, but my mom played a big part in helping me feel at ease. I usually felt the most anxious at school when it was noticeable that I had to eat something different or miss out, because I don’t like being in the spotlight.

I started struggling more with anxiety when I moved out and was on my own. I worried about the future and trying to find someone who understood me. I was fortunate, though, in meeting my amazing husband, who was so supportive from the start. Right away, from our very first date, he did research on his own and learned how to safely cook for me. Once we got married, he has always insisted that we keep our home gluten free.

Maybe you have loved ones who work hard to provide you with a gluten free meal. You’re so grateful, but you know…it was prepared in a kitchen that is full of gluten and the food could likely make you sick. This is something I have always struggled with and have really had to work on. I would rather risk getting sick than hurt someone’s feelings.

Maybe you’re eating out at a restaurant and you’ve done extensive research and asked all the questions and ordered carefully. Your food comes and you anxiously size it up, looking for any indication that you may regret your meal later. This is also hard for me because I don’t want to cause a fuss or disrupt everyone’s meal.

Maybe you’re like me and have a supportive spouse who has been understanding from the very beginning. However, we’ve learned that we can’t always spontaneously kiss when we want to. How do we know for sure? I once was accidentally glutened after my husband ate breakfast and then came home and kissed me. What did this lead to? Pangs of anxiety almost every time my husband leans in to kiss me. Unless we’ve been home together, I have to double-check with him about his gluten intake and if he’s brushed his teeth since then.

Some people are so understanding and accommodating. Some people think it’s a joke and that we’re overreacting. Especially for celiacs who may not show outright symptoms once glutened.

What can be done? First, it’s so important to have support in your life. Whether that’s support from loved ones, joining support groups, or even starting counseling or therapy.

I know it can be so difficult to not have the support of your loved ones. I have always been so blessed to have amazing support, especially from my husband and my family. I’ve heard many horror stories from celiacs in support groups I’m a part of that lack crucial support systems in their lives. My advice is to continue to try to educate your loved ones as kindly and patiently as possible, and ALWAYS advocate for yourself.

One simple place to start is Facebook. I’m a part of several Celiac Disease Support Groups that are great places to go for advice or even just to vent. There are so many people who know exactly what you’re going through.

Another piece of advice I have is to get in the habit of taking your own food places. Take food to work, to restaurants that aren’t safe, even to family gatherings. Yes, it may be awkward and uncomfortable, but then you know for sure what you’re eating is safe. If possible, you can even offer to host get-togethers and take care of the food yourself, so you know exactly how everything is prepared.

Celiac disease is real. It’s not easy. It’s here to stay for the rest of your life and can cause anxiety. Just know that you’re not alone. If you ever have any questions or need someone to talk to, please don’t hesitate to contact me.

“Be gentle with yourself. You’re doing the best you can.”

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