Being diagnosed with any type of disease or illness usually isn’t associated with positive emotions. But when my doctor called me and told me that I had celiac disease, I was thrilled. At the time, I didn’t care that I was just sentenced to a life without bagels, pasta, bread, and donuts. It didn’t matter to me that I had to avoid certain foods as long as it meant that I could live a life outside of the bathroom. A life without pain and discomfort. A normal life. All I cared about was that I knew what was wreaking havoc on my body and I could do something about it. Avoid gluten. That’s all I had to do to get my life back…how hard could it really be?
I wish I could end this blog post here and report that eating gluten free ended up being that easy but, as I learned, it is more difficult than it seems. In the beginning, I thought that all I had to do was avoid foods that had wheat or gluten listed in the ingredients. At first, this seemed to be working for me as I started to feel better. However, I quickly reached the point where my symptoms plateaued. I was still experiencing fatigue and brain fog on a regular basis and the occasionally bout of nausea and GI issues. Because I thought I was eating gluten free, I chalked these symptoms up to the fact that my body was still healing. Damage was done to my intestine and I knew it would take time to heal.
Eventually I started to get fed up with my lingering symptoms and began to question if it was more than just my body healing. So, I decided to do some research to see if I was missing something. I joined celiac disease support groups on Facebook, spent time reading information online, and bought several books to learn more. One of the most eye opening and helpful books I read was Jennifer’s Way by Jennifer Esposito. After doing more research, I started to realize that eating gluten free is more difficult and complicated than I originally thought. I also quickly learned that my symptoms weren’t completely going away because I was still consuming gluten. In the hopes of saving someone else from making the same mistakes I did, I’ve summarized the top three things I wish I knew before going gluten free below.
Lesson #1: Gluten is in so much more than you think it is.
When I started eating gluten free, I thought it was obvious what foods contained gluten (bread, pasta, pizza, etc.). But as I educated myself, I quickly learned that eating gluten free was more difficult than I originally thought because gluten is in everything. No really, it is in way more than you would think. Make up, body wash, toothpaste, chicken broth, spices, rice mixes, candy, lunch meat, salad dressing, sauces, oats, hot dogs, vitamins, medication, marinades, flavored potato chips, condiments–this is just a small list of foods that could contain gluten.
The problem with my method of checking for gluten was that I assumed that there were only two ingredients to look out for- gluten and wheat. But after more research, I found out that gluten can have many names. I had no idea that I had to avoid bulgur, brewer’s yeast, durum, farro, kamut, malt, matzo, seitan, semolina, spelt, triticale, atta, einkorn, and emmer– just to name a few. To make matters even more complicated, these ingredients can also have several different names. After learning this information, Mike and I went through all the food in our house and checked every single label. If we didn’t recognize an ingredient we Googled it to find out whether or not it was gluten. By the end of this process, we had trash bags full of food that I couldn’t eat. We were both in shock by how many food items I was eating that contained gluten. From that point on, I religiously checked (and double checked) every label. To this day, if there is an ingredient I don’t recognize I do more research or just don’t eat that food.
Lesson #2: Cross contamination is a real thing.
When I first went gluten free, I didn’t worry about my husband making a sandwich in the kitchen or eating out at restaurants. But as I continued to educate myself, I learned that cross contamination was a real thing that I needed to be aware of. Cross contamination means that a gluten free food was contaminated by gluten and is no longer safe to eat. This could happen by cooking or preparing gluten free foods in a kitchen that also cooks or prepares gluten containing foods. It also can happen in factories if equipment is not cleaned between making gluten free and gluten containing foods.
It only takes a few crumbs to cause damage to the intestine, regardless if you feel the the effects. I learned the hard way that I am very sensitive and feel the effects of even small amounts of gluten. Before I knew about the seriousness of cross contamination, I ate at a restaurant that I shouldn’t have due to their lack of knowledge and I paid the price. I experienced anxiety, panic attacks, brain fog, fatigue, bloating, body aches, depression, and GI symptoms for a month after eating a meal that they claimed was gluten free. I stopped eating out as much because even at restaurants that I can trust, there is always a risk. I cleaned all our dishes, pots, and pans to make sure I wasn’t cross contaminating myself that way. I bought my own toaster that was for gluten free foods only. I designated a gluten cabinet for Mike’s foods and started to follow him around (or nag him) anytime he was making gluten containing foods in our kitchen. I learned that when it comes to cross contamination, it is better to air on the side of caution.
Lesson #3: Gluten free labels don’t always mean that it’s really gluten free.
Part of the reason I thought eating gluten free was easy at first was because many foods contain some sort of gluten free label. In my quest to learn more about avoiding all gluten, I found out that a food can have a gluten free label yet still contain gluten. Yes, you heard me right. It can say gluten free but still contain gluten (insert a hundred eye roll emojis here). So it is not enough to just look for a gluten free label and assume you are good. There seems to be a million different gluten free labels (I might be exaggerating slightly) that all have different meanings and limits for how much gluten the product can contain. This is another lesson I learned the hard way. When I found out lucky charms were “gluten free”, I was so excited and enjoyed a bowl (or two…or three). Unfortunately, the gluten free label did not mean much because I ended up in the bathroom the rest of the night. I quickly learned that the certified gluten free label is the safest option as they have strict limits and test each batch.
I was naïve in the beginning of going gluten free by thinking it would be easy and jumped into it without educating myself on what it truly meant. But I am here to tell you that, although it is not easy, it does get better. Yes, it was difficult at first and felt just about impossible to avoid gluten. I felt frustrated and overwhelmed but I eventually learned how to be an ingredient reading ninja. I still get glutened on occasion (because life happens) and have to deal with the unpleasant symptoms but it happens much less than it did when I first started eating gluten free. I am now at the point where I am comfortable with my ability to read ingredients and determine if a food is safe to eat. So to anyone who is just starting off in their gluten free journey or is in the midst of the learning curve– hang it there, continue to educate yourself, and know that it gets better.
-Kelsey