A lot of people don’t understand what it’s like to have Celiac disease. Sure, there are countless articles about it, but people are still unaware of how serious it can be. Even medical professionals are skeptical of its seriousness. I recently saw a new doctor and had to give him a rundown of my medical history, which is very normal for a first appointment. But after I mentioned that I have Celiac disease, the doctor looked up at me and asked, “Now are you a true Celiac? Because I know Celiac and gluten-free diets are trendy.”
I’ve been a diagnosed Celiac for nearly seven years, and during that time, a lot of people have asked me if I’m following a gluten-free diet as part of a trend. Friends, classmates, co-workers and strangers will say they admire my discipline or tell me they “tried the gluten free thing” but couldn’t keep it up. I’m constantly explaining to people that I’m not following some sort of trend, that I have Celiac disease and need to be gluten free unless I want to spend the next week of my life in the bathroom. Following a gluten-free diet is a piece of (gluten-free) cake compared to having to explain why I’m on the diet. But even though I’m used to people asking questions about my diet, I never expected a doctor to question it.
I’m not going to get into the whole story of how I was diagnosed with Celiac disease, but I will share the highlights. When I was 13, I was diagnosed with social anxiety disorder and hypothyroidism. During that time, I had severe stomachaches, which doctors assumed were a result of either my thyroid issues or my anxiety. I was treated for both conditions and lived the next few years with a healthy thyroid and manageable anxiety, but the stomachaches never went away. I continued being tested for various stomach ailments. I had countless blood tests and an ultrasound as doctors tested me for everything they could think of.
Doctors wanted me to describe the pain as dull, achy, crampy or stabbing, but the only way to describe it was that it felt like little men were living inside me and pinching my organs. Eventually my doctors gave up on testing me. They told me the stomachaches were all in my head and just a symptom of my anxiety that Zoloft couldn’t help. When I kept complaining, they diagnosed me with irritable bowel syndrome, even though I didn’t have many symptoms of it. They gave me IBS medicine, which didn’t help. My parents grew frustrated and took me to a new doctor. After reading an article about Celiac disease, my mom asked my new doctor to test me for it. He was skeptical at first, but the blood test came back positive. He quickly set me up with a pediatric gastroenterologist so I could have an endoscopy done.
A week later, the doctor called to confirm Celiac disease. I immediately started a gluten-free diet. It took about a year to get all of the gluten out of my system, but when it was finally out, I felt great. In fact, it was the first time in 15 years that I actually felt good. There was no pain! I could eat food without having to deal with tiny men pinching my organs afterward. There were times following my diagnosis where I made mistakes and suffered the consequences. After helping to bread the onion rings at a catering job, I experienced a major migraine for the rest of the night. (Celiac disease isn’t just a a gastrointestinal problem. It can lead to migraines, rashes and various ailments.)
After seven years with Celiac disease, here are some of the most important lessons I’ve learned:
There aren’t varying degrees of Celiac disease.
If you have Celiac disease, any amount of gluten will hurt your system. It’s possible to not have a reaction to a few crumbs, but your intestines will notice the gluten. That’s why it’s so important to be careful about cross-contamination. Your body might not react to a little bit of gluten, but you could still be damaging your insides, which could lead to more health problems in the long run. Some people who can’t eat gluten don’t have Celiac disease, and for those who are just sensitive to gluten, there are varying degrees of sensitivity.
Italy is a Celiac’s dream.
When I told my Italian grandmother that I couldn’t eat her pasta or bread anymore, I think she took it personally. To her, eating gluten-free wasn’t a cure for a medical condition; it was an affront to her culture. I always wanted to travel to Italy, but after my grandmother’s reaction, I worried all of Italy would be offended by my diet. Thankfully, everyone in Italy was so accommodating. I ate bread and pizza, and if the restaurant didn’t have gluten-free pasta, they substituted rice for any of their pasta dishes.
Eating pizza in Italy was always a dream of mine, and I’m so glad I didn’t have to sacrifice that dream because of Celiac disease. I later did some research on Celiac disease in Italy, and they test every citizen. Those with a positive diagnosis are given a monthly stipend of 140 euros to help them by food. If that’s not awesome enough, Italians with Celiac disease are allotted extra vacation days to give them time to buy and prepare gluten-free food. Several other countries also have amazing policies in place to help those with Celiac disease. In America, buying gluten-free food is treated as a luxury, but other countries treat it as a prescription and offer discounts for those who need to follow the diet. Either I need to move, or the US needs to step up their game. Or both!
Not everything labeled “gluten-free” is okay for people with Celiac disease.
Domino’s offers a gluten free pizza, but they specifically say that it is not recommended for those with Celiac disease. Some companies can’t totally prevent cross-contamination, so their gluten-free foods are only okay for those who are not following the diet for health reasons. The same goes for a lot of items at Trader Joe’s. They often manufacture their snacks on equipment shared with wheat. It’s very important to read all labels!
Some people just won’t understand
I used to work in a restaurant, and it horrified me how often waiters ignored guests who told them they couldn’t eat gluten. Oftentimes, I saw waiters fail to tell the chefs about a gluten-free guest. At another food service job, I watched as my manager told a gluten-free customer that the fries were safe for her to eat, but I saw those fries cook in the same oil as the breaded onion rings! They weren’t safe, and when my manager wasn’t looking, I let that customer know the truth. And there has been controversy over the lack of understanding of Celiac disease. The Disney Channel pulled an episode of Jessie after Celiac awareness groups criticized the show for having characters mock a gluten-free child by throwing bread at him. And, while there has been no confirmation on the matter, actress Jennifer Esposito believes she was fired from the CBS series Blue Bloods because of her ongoing struggles with Celiac disease. While I wouldn’t say those with Celiac disease are ignored or forced to suffer, there are times when it isn’t taken seriously.
Seriously, some people don’t understand it.
After I was diagnosed, I called the person in charge of nutrition at my high school and asked if any food in the cafeteria was safe for me. After explaining my needs, he asked, “Well, the whole wheat pasta is fine, right?” Um, no. I never ate the cafeteria food again after that answer. In college, I had similar issues. The dining hall had a gluten-free section that consisted of molding bread and corn Chex. That was it. At one point, they tried to offer hot meals that were gluten-free, but every time I ate one, I had a reaction to it. They weren’t doing much to prevent cross-contamination, and their suggestion box was full of angry comments from me. Apparently things changed after I moved off campus, so hopefully students with Celiac disease have it easier now.
Honestly, I’m lucky to have been diagnosed with Celiac disease at a young age before any irreparable damage was done to my system. And this is a great time to have Celiac disease because it is, for better or worse, trendy. When I was first diagnosed, I had to explain to people what gluten was, but now everyone knows! It’s gotten easier.
But sometimes, even though I know it could be worse, I get frustrated when people don’t understand why I eat gluten-free, so I wanted to share my experiences. I’d love to hear other people’s experiences, so please share! And if you live in Italy and have Celiac disease, please tell me everything!
*If you have Celiac disease and plan on traveling to foreign countries, I highly recommend this website! I used these translations in every country I went to, and waiters were always very kind when I handed them the cards. Pro tip: I drew smiley faces on the cards so they knew I wasn’t trying to be a nuisance.
Featured image via Flickr