Marie Kawaguchi is a Northern Utahn who was diagnosed with celiac disease over 16 years ago. Through From the Community, she’ll share gluten-free recipes and stories of support for others with the disease. She enjoys spending time with family, reading, watching movies and more.
In the interests of full disclosure, I must tell you I am no longer strictly gluten-free in the normal meaning of the phrase, nor am I vegetarian any longer. I haven’t been for the last six months.
To make a long story shorter, with the diagnosis of an additional autoimmune condition, I now follow the Autoimmune Protocol, or AIP for short.
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From the Community is a new Standard-Examiner project where northern Utahns are invited to share their stories. Want to write about your experiences, interests or expertise? Get in touch with news editor Ann Elise Taylor at firstname.lastname@example.org. You can learn more about From the Community here.
The AIP is becoming much more prevalent in the autoimmune community because it focuses on healing the body through proper, nutrient-dense, organic, fresh foods and is virtually allergen-free. It’s free of gluten, grains, dairy, eggs, nuts, soy and legumes, and emphasizes meats that come from local grass-fed, organic sources.
Embracing this lifestyle with the assistance of my functional medical doctor has helped me tremendously. I now remain awake for more than two hours at a time, and my antibodies have dropped by half — a sure sign something is going right.
Adopting this lifestyle over the last six months has taken time and persistence. I found myself reliving many of the same emotional highs and lows as I encountered when I transitioned to being gluten-free — wondering what I would be eating, how could I dine out successfully and how my family would adjust to yet one more dietary change.
I first removed dairy at my doctor’s urging, and my craving to snack went away, along with the bloating. My doctor then urged me to remove eggs, nuts, legumes and soy, and to begin including grass-fed, organic meats and poultry. After removing dairy products from my diet led to positive results, I initially jumped in with both feet, sure I could do it all at once and sure of my ability to adjust. However, I found I was not doing anything very well at all.
Metaphorically speaking, I pulled myself out of the swamp and back up on the bank, regrouped and began my journey in much smaller steps, just as I would have advised anyone else. Successfully gluten and dairy-free, I removed eggs, then nuts and so on over a period of weeks, until at last I removed rice from my diet about two months ago.
With the removal of each allergen, I noticed a positive change — headaches were the exception and not the norm, I had more energy, my focus improved, I lost weight. And I found myself focusing on everything I COULD eat (which is a lot), not what I was leaving behind. For whatever reason, there are still some days I feel as if I have been hit by a truck, but the overall improvement has been so great that I do not see me returning to my pre-AIP days.
I shared all this so you can see that no matter what the circumstances, there are emotional and physical challenges to any lifestyle adjustment we make, and the stories can be remarkably familiar in both pain and benefit gained. For instance, take the story of Maddie Page, a wonderful young woman I know who shared her experiences with me a few months ago on becoming gluten-free.
Thanks to Maddie for letting me share the story below, which she wrote.
It was August of 2014. I was at work, and my mom called me on my lunch. She told me the life-changing news — that I had celiac disease. A wave a shock, confusion, relief and fear washed over me. I had no idea what celiac disease was and what it meant to have it.
What is gluten? Will I be able to eat any of my favorite foods? A thousand questions rushed through my mind while I was fighting back tears. I was beyond relieved to have a diagnosis and thought going gluten-free would be easy.
Boy, was I wrong!
Everywhere I turned there was gluten. It’s everywhere. I didn’t want to go out with my friends, I cried myself to sleep and I felt so alone. I didn’t want to tell anyone. I was so embarrassed. I was that girl — the one who needed a “gluten-free” meal. That was the last thing I wanted.
By this time, I was angry. Angry that I had to give up my favorite breads, cereals and Oreos. Angry that we had to have a discussion every time I wanted to eat something. Angry I had to be an expert label reader. And angry that I could no longer eat at some places without getting sick.
I was terrified. I was scared to go out to eat, and I still am. There’s the potential risk factor of going out to eat, and sometimes it is easier to just say no and stay home. As soon as the word “food” is uttered with my friends or at work, an anxious feeling rushes over me. Questions start going through my mind. What restaurant do they want? Do they have a gluten-free menu? Do I trust the restaurant? It’s a never-ending stream of anxiety. I have had my diagnosis for almost two years, and I still feel this nervousness whenever the words “go out to eat” surface.
When people hear and learn about celiac disease, they don’t understand that there is an emotional side of the disease. It’s not just giving up your favorite foods; it’s the constant stream of the need to be aware. It can take a toll on you to always be thinking about it.
I need to be aware of all of the food that’s around me and the food the people around me are eating. Even a bread crumb can damage my body. I am aware all of the time, and if I’m not, I pay the price. I have to be aware of cross-contamination everywhere I go. Many restaurants do not understand. They have gluten-free menus, but say they’re not safe for people with celiac or that they aren’t careful with cross-contamination.
Do you know how frustrating that is?
I only have a few restaurants I feel comfortable eating at because I have given up on the false advertising. Having celiac is difficult. I have to ignore the looks or comments now.
I had the opportunity to go to Italy a few months ago. I know what you are thinking. Why would you go to Italy? It’s the land of pizza, pasta and lots of gluten! Italy is actually a celiac-friendly country. Because eating out is an important part of Italy’s culture, they are very sensitive to gluten-free. While I was there, I didn’t get sick and felt very comfortable eating. I was beyond surprised! It shouldn’t be this easy to eat in another country, especially when I don’t speak the language, but it was.
When I came home from my trip, I knew I was entering a world of gluten and clueless people. It was frustrating to come back to. I wish America could be just like Italy when it comes to living a gluten-free life, but it’s not. At least not yet.
It still makes me emotional thinking back on my diagnosis. I felt every emotion possible. Some days are easier than others, and it can still be really hard. I still bring my own food a lot of the times, and I usually have a lot of snacks in my purse, just in case. I still prefer to eat at home.
After long days of dodging gluten, I still want to throw myself a pity party. I still get embarrassed because I don’t want to make a scene. But it’s worth it. It’s worth it because I feel so much better. I don’t have worry about where the bathroom is or about my stomach hurting. It is worth it. I wouldn’t have been able to overcome all of these emotions if I didn’t have my mom, my family and a supportive celiac community.
If you would like to share your own gluten-free strategies and/or stories, please contact Marie at email@example.com.