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.