4 May 2010
Gluten free, but not so free
When I first got confirmation more than seven years ago that I did indeed have celiac disease, my reaction was one of relief, bordering on excitement. Even though I had never heard of celiac disease, and didn’t know one person who was gluten-free, I was so happy that there was an answer to my ills. I wasn’t doomed to live with my random assortment of health problems. I had real hope that I was going to feel better soon. I had an extremely positive attitude.
And then I went shopping. I really thought it would be easier than it was. At first, I patiently read the labels, one by one. Then I just sort of scoped whole aisles, hoping something would stand out. I tried to get someone’s attention to help me, but the store was busy and no workers seemed to be available. Then, I lost it. I began to feel anxious, and the reality of my diagnosis started to sink in. I could no longer eat gluten… for the rest of my LIFE. Suddenly this diagnosis that I was excited about felt very heavy and bleak.
The interesting thing was that I didn’t really love bread as so many people do. I never liked pancakes or doughnuts or pies much. I had pretty much stopped eating pizza and burritos years before because I didn’t feel well after I ate them. So why was I so upset? It wasn’t the loss of the bagel. It was the loss of freedom that made it so hard. I was always the friend who would go anywhere and eat anything – and now I would be high-maintenance! I could no longer be adventurous with food as I had always been. I could no longer just go with the flow either. Being gluten-free requires planning, a lot of questions, caution and having to say no. It’s just not as fun as saying yes!
I left the store that first day without any groceries and called my mom in tears. She vowed to be gluten-free with me, and she has, since Day 1. We shared food finds, recipes, resources, and symptoms. We attended conferences to learn more about celiac disease and being gluten-free. We called each other from supermarkets when we weren’t sure what brand was okay. Without her to go through it with me, it would have been a much steeper mountain to climb. If you are just starting the gluten-free diet, I recommend finding someone to be your buddy, or joining an online group. You don’t have to go it alone.
Things are so much better today than just seven years ago – there are more gluten-free products are the market, there is more awareness, there are many resources, there are more people who are gluten-free for many reasons, and there are even dedicated gluten-free bakeries and stores. You can find gluten-free bagels, bread, pies and doughnuts. And yet, there is still that lack of freedom that may never go away.
Don’t get me wrong – I wouldn’t want my ill health back for that freedom. I am so grateful that a gluten-free diet is all that was needed to completely change my life, and the lives of many of my family and friends. I am healthy and happy, and so it has truly been worth it!
Alison St. Sure was diagnosed with celiac disease at age 32 after declining health beginning in her 20s. Going gluten-free was life-changing for Alison and she wanted to share her story and help others going through the same thing. She shares her experience and practical advice on her blog, Sure Foods Living. She also leads a chapter of the Gluten Intolerance Group, and consults and teaches classes about living gluten-free. She is very passionate about raising awareness about not just celiac disease, but also gluten sensitivity. Alison has two young daughters, one of whom has severe food allergies.