Going Gluten Free, a Perspective
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.
May 04, 2010 @ 09:59:29
Thanks so much for sharing this Alison. I’m glad to know that there are others out there who feel the way that I do. I was diagnosed 3 months ago and it has been an uphill battle. So many people don’t understand how sick I was and what gluten does to my body. It’s not their fault but it is frustrating. Heck, my family thinks I am nuts. Some of them simply refuse to believe that gluten can do such harm to a person’s body.
Thank goodness for my best friend. He was with me when things got really bad. I was bed ridden for months. He supports me and even reminds me now and then how much better things are now that my good health is coming back.
May 04, 2010 @ 10:37:02
Kimberly,
Three months is still pretty new! It really does get easier. As far as family members go (and anyone else for that matter), there is a lot of denial out there! Many of the same people who don’t (won’t) believe how harmful gluten can be are the people who should probably be gluten-free themselves… there are a lot of sick people out there. Luckily, the awareness is growing. I am sure they will accept it in time when they realize how much better you feel and how common a problem it really is. Good luck!
Alison
May 04, 2010 @ 11:53:21
Hello Alison,
My baby was diagnosed with celiac at 17 mo. She is 21 months today. I vouched I would be gluten free and take this journey with her. I feel empowered, healthy and full of fun and exciting receipes!! I also feel WE have control over our choices and we have will power and dedication. That type of personality goes way beyond a food choice. Be glad you can control your symptoms with a food, not a drug. Not to mention the overall health benefits of this type of lifestyle.
thank your mom, our babies are worth it!!
May 04, 2010 @ 12:14:04
Thanks so much for sharing, Alison & Kimberly. I went GF about 2 yrs. ago, b/c my chiro. told me to try it, to see if it would relieve terrible joint achiness. It has been the best decision, and the hardest when dealing with other people and their questions/denial re: gluten. I can completely relate Kimberly. And, I tell family that before I went GF, I was in constant pain, and sick all the time with sinus problems etc, and now I am healthy. It does get better b/c you will regain your good health, and then it is a vivid testimony to all those around you!
Hang in there!!!
Nov 02, 2010 @ 16:09:36
Thanks so much for sharing this Alison. I’m glad to know that there are others out there who feel the way that I do. I was diagnosed 3 months ago and it has been an uphill battle. So many people don’t understand how sick I was and what gluten does to my body. It’s not their fault but it is frustrating. Heck, my family thinks I am nuts. Some of them simply refuse to believe that gluten can do such harm to a person’s body.
Thank goodness for my best friend. He was with me when things got really bad. I was bed ridden for months. He supports me and even reminds me now and then how much better things are now that my good health is coming back.
Jan 17, 2011 @ 16:14:09
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