Nobody asked for this, but I’m going to share it with you anyways… I hope it sheds light on your own struggles, or gives you empathy for others in your life who may deal with similar issues. I go to battle with food every day. Some days are better than others, and it is a struggle that has lessened over time, only by the grace of God.
Sounds like a scary word, doesn’t it? It’s a term I didn’t even know existed until a friend shared this article in 2015. Immediately, this issue resonated with me. I have been thin (my BMI classification is “underweight”) my entire life. Especially in my teens, I received a lot of comments about it. People would tell me they believed I had an eating disorder… Until they saw me eat more than they did in one sitting. Well meaning friends at church would try to feed me more, or even privately ask my parents about my eating habits. So, if you think that you escape scrutiny when you’re thin, think again. People comment on my body ALL the time, and it’s not always appropriate.
Before you roll your eyes and say, “Wow, good for you.”, I want to tell you the rest of my story. It’s true, that growing up I ate whatever I wanted. Pretty healthy, but I definitely didn’t deny myself sweets, or think about food too much. Until the summer of 2012.
In 2012, I was 24. My husband and I had been married for two years, and it’s a pretty well known rule of psychology that people gain weight in the first couple years of their marriage. I can’t recall whether we did or not, but my husband decided he wanted to try a low carb diet before our Walt Disney World vacation that summer. I do love trying to be more healthy, so we did it together!
My mom had been eating low carb for several years, so she was a great resource and encouragement. It was difficult at first, but we succeeded at eating low carb for the summer, and Isaac did lose quite a bit of weight. I lost some weight, but what I didn’t realize at the time, was that denying myself grains was causing a huge shift in my body. My gut was finally healing from years of unintended abuse (that likely prevented healthy weight gain), and my body was functioning better as a whole.
When we went off the low carb diet, things changed dramatically. Suddenly, I was having stomach aches and cramps, I was more lethargic, I couldn’t think as clearly, and I was sneezing all the time! I began to do some reading, and one of the first books I picked up was, “The G-Free Diet: A Gluten Free Survival Guide” by Elisabeth Hasselbeck. Like a lot of other people, I had previously thought eating gluten free was a ridiculous fad. However, as I read Elisabeth’s story, I saw myself. She talked about IBS symptoms, stomach pains, frequent bowel movements, inflammation, and how much better she felt after fasting on Survivor. Suddenly, I knew what I needed to ask my doctor about as soon as possible.
November of 2012, I went in to my doctor armed with research and evidence of my symptoms. I am so grateful that she listened to me, and suggested a course of action. She took a blood draw to test for Celiac’s Disease, and recommended I fast from gluten for two weeks. I did the two weeks of no gluten, but made a common mistake in the middle of my trial. Halfway through, I ate oatmeal… Oatmeal is easily contaminated by wheat, and later that day I was nearly doubled over with pain. After telling my doctor about this, she sent me to a gastroenterologist.
The gastroenterologist explained that while my blood test didn’t show evidence of Celiac’s Disease, it isn’t always picked up and we should do an endoscopy to check for intestinal damage. I wanted a conclusive diagnosis, so we scheduled the procedure. There was a catch though. In order for the endoscopy to reveal whether or not gluten was causing damage to my gut, I had to eat it for at least 30 days. It was a terrible prospect, but also a last “hurrah” of sorts. So over December of 2012 I ate as much gluten as I could stand.
Finally, on January 23, 2013 I had my endoscopy. They put me under, then sent a scope into my small intestine to search for damaged villi. When you have Celiac’s Disease, the villi is shredded from your small intestine, and the walls are completely smooth. This prohibits your body from properly absorbing nutrients, which is why it is a very serious autoimmune disorder. After the endoscopy, my doctors concluded that I do not have Celiac’s Disease. However, I am dealing with what they call, “non celiac’s gluten intolerance”. So while I do not suffer permanent damage (as far as they can tell), gluten does cause some terrible issues, and should be strictly avoided.
This is when my battle with orthorexia truly begins. Now I was armed with evidence from all sides that it was necessary for me to be gluten free. Suddenly, the entire world was filled with contaminants. I had to learn how to grocery shop, eat out, and enjoy parties in a whole new way. Invitations accepted to eat with friends were laced with fear. While I previously prided myself on being open to eating anything and everything (once upon a time I ate sea urchin, but that’s a story for another day), I suddenly had to advocate for myself and inconvenience people.
Fear was now building with every passing day. I became obsessive about reading food labels, I tried various ways to restrict what I was eating, and I would spend huge amounts of time researching new restaurants before we would go out. I even emailed a movie theatre once ahead of our visit, to find out what my options were, and how to order.
In some ways, all of these things were important. I did need to learn new terminology about gluten, and know how to best advocate for myself. However, the fear and pressure that accompanied all of these activities was not healthy, and I can see that now. As the years have gone on, gluten free products and knowledge in the general public has increased mostly for the good. These changes, coupled with a lot of prayer and anxiety reducing practices have helped me immensely. In fact, I was largely past my orthorexia battle before I even knew what it was, but the fear and obsession does creep up every so often. Eating a healthy diet with the least number of restrictions possible helps me a lot, along with some other strategies.
So what do I do now to manage my intolerance? I have a few steps that I always take when going to new places…
- I do a moderate level of research. When we traveled to Japan, much of my trip preparation was focused on food and how to communicate with servers. I even downloaded a translation card from CeliacTravel to help, though people usually just came back saying, “Sorry, nothing for you.”. In preparation for our most recent trip to Disneyland I joined a Gluten Free Disneyland Group on Facebook, which has been an incredible source of information!
- I bring my own food. There’s nothing worse than low blood sugar to ruin your day. I have a list of non perishable healthy snacks that I bring now every time I travel, and I usually have at least one in my purse on a regular day.
- Enzyme Based Supplements. When I am not 100% confident about what I am about to consume (or I want to try something with gluten), I take a Gluten-Ease capsule before eating. This does NOT work for everyone, and it is not FDA approved, so use at your own risk. I have had great success with using it very sparingly over the years.
- Prayer. I pray often that God will calm my fears, give me the wisdom to discern what my body needs most, and grant me the strength to advocate for myself when necessary.
- Do NOT let it stop you! I will admit that much of my diet during our week in Japan consisted of snacks I brought, cheap chocolate bars, vending machine milk tea, french friends, and ice cream. This is not the healthiest (or even most enjoyable) way to eat while traveling, but eating something I knew was safe was better than the alternatives. Yes, it’s heartbreaking to me that I can no longer enjoy local cuisine like I love to do, but there are many other aspects of travel I love and cannot live without. I’ve even discovered new things to love while traveling! Like sketching and painting while on location, instead of endlessly snacking. 😉
I hope that if you are struggling with any food issues that you can find the help you need. Whether it be professional, spiritual, or your own research, do what helps you the most and know that you are not alone!