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Alice Bast, Beyond Celiac

Open Up About Celiac Disease to See the Bigger Picture

Don’t allow a celiac diagnosis to leave you emotionally and socially boxed in.

I stood 5 feet 9 inches tall and weighed all of 100 pounds. My teeth cracked under pressure, my hair fell out in clumps, and excruciating migraines and bouts of diarrhea kept me awake at night. To say I was suffering with poor health 25 years ago, in the time before my celiac diagnosis, is clearly no exaggeration.

Yet if you speak to me today about what good health looks like, thanks to the diagnosis and strict adherence to a gluten-free diet, I’m so pleased to say that I actually know what this is. I don’t take it for granted either: I cherish it and strive hard to maintain it.

Working from this state of wellness, I’m able to approach both my mental and physical health not simply through the lens as “a sufferer” but as someone who’s making a conscious effort to pay attention to my whole self, and to live life to the fullest.

When you’re living with celiac disease, it’s so easy to get sucked into only worrying about treating the autoimmune condition, and being on the constant lookout for symptoms. Chances are, you waited a long time for your diagnosis and you’re ready to move forward with the feeling better part. I can completely relate to this as I had to contend with my “mystery illness” for eight years.

But sometimes, in the quest to fully control celiac disease, people with it opt out of much of life. Too much of life, I would argue.

I’ve heard many members of the celiac disease community say they avoid social functions and restaurants at all costs. In fact, a Beyond Celiac-conducted study’s preliminary results found that 55 percent of people surveyed felt moderate to a great deal of fear when faced with dining out. Many opt to decline invitations with a list of reasons: it’s not safe, I’m tired of explaining my needs, I’m embarrassed or it’s not worth it.

My question to them is, why fight so hard for a diagnosis to get your life back, only to give it up again because of fear? We need to live in this world, gluten-free or not. Our health is first and foremost, but our mental and emotional well-being should be a part of the bigger picture.

Once upon a time, I was hesitant to talk to people about my gluten-free needs. I felt like a burden. I’d apologize profusely when I couldn’t go to a selected restaurant and opted out of certain events to avoid the fuss altogether.

But then I realized that if I wasn’t open about my disease, nothing would change. I would forever be missing out on family vacations, birthday parties, work travel and holiday dinners. In short, there would be no more of the things I loved that involved food. It didn’t seem fair that something so beyond my control could put the brakes on my happiness. So, I stopped apologizing and started educating instead. I got back out there and reclaimed my life.

As a first step, I learned to approach anxious dining situations more logically, identifying worries and then assessing the likelihood that those events would occur. For example, if cross-contact is my concern, I gauge the real risk by analyzing the situation: Is the restaurant trained through a program like GREAT Kitchens? How are gluten-free options identified on the menu? Did the server seem knowledgeable? This method can help in making an educated decision based on facts, not emotion.

I’m certainly not saying we should throw caution to the wind. What I am saying is that we need to find the balance between taking control of our health and living abundantly. We’re not perfect; we are going to make mistakes, and so are the people around us. Maintaining the health of our whole selves means learning from experiences, letting go of guilt and getting back out there. If we don’t keep pushing, trying and teaching, we’ll never be able to eat without fear in a gluten-filled world.

It’s time to look beyond that diagnosis of celiac disease and gluten sensitivity toward a healthy whole self. To make that transition, picture yourself at 70 years old. What do you want your life to look like? What do you want your memories to entail? Enlist the help of family, friends, your doctor, psychologist or whomever might help you find those visions. Then, take a step back, plan your route and start your journey to the happy, healthy life you deserve.

Alice Bast is President and CEO of Beyond Celiac (formerly the National Foundation for Celiac Awareness). For resources to navigate your gluten-free journey, visit  www.beyondceliac.org.

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