Celiac disease is one of those not-so-common diseases. Only one in 100 people worldwide have celiac disease. But most of those are undiagnosed or misdiagnosed. For that reason, living with celiac disease is a story that not everyone can share. I’ve lived with celiac disease for seven years. Here’s what it’s really like.

Living With Celiac Disease: What It's Really Like
Living With Celiac Disease: What It’s Really Like
Graphic by Haydee Vanegas.

Celiac disease is an autoimmune condition in which the body has an abnormal reaction to gluten and then attacks itself. This leads to damage to the small intestine. While some patients with celiac disease experience gastrointestinal issues, others have no symptoms. A percentage of those with celiac disease have more serious complications, including infertility. Clearly, the experience of living with celiac disease can vary considerably by individual.

There is no specific age at which the symptoms of celiac disease appear. For some patients, this begins in childhood, while others with celiac disease may never show symptoms. In my case, most of the symptoms were in the form of gastrointestinal issues. I have been living with celiac disease all my life. Here’s what my celiac disease symptoms are really like.

What Is It Like Living With the Symptoms of Celiac Disease?

Living With Celiac Disease Symptoms: What's It Like?
Living With Celiac Disease Symptoms: What’s It Like?
Original photo from Baptist Health. Graphic by Haydee Vanegas.

As I said, everyone with celiac disease experiences it in their own, very personal way. My symptoms included unexplained weight loss and chronic diarrhea. Those symptoms are more typical and can overlap with the symptoms of many other diseases. I also had another, not-so-common symptom: dermatitis herpetiformis. These celiac disease symptoms have been with me for nearly my entire life.

While living with undiagnosed celiac disease, no doctor could explain why I was losing weight so fast. There also wasn’t an explanation for my delayed physical development. But one of the most alarming celiac disease symptoms I experienced was dermatitis. This was a constant, intense itch over much of my body. At first, it was just on small areas of my skin. But just months before being diagnosed, wounds developed all over my skin.

Living With Celiac Disease: Symptoms
Living With Celiac Disease: Symptoms
Original photo from glutendude.com. Graphic by Haydee Vanegas.

One of the biggest challenges of living with celiac disease were the gastrointestinal issues. Doctors attributed my rapid weight loss to a really fast metabolism! There was no other explanation for the fact that I was always 10 kilograms below the average weight for my age.

The chronic diarrhea I was experiencing also didn’t seem to have a direct cause. Some doctors suggested it was from eating too many sweets. My early days living with celiac disease were spent trying to find explanations and receiving blind treatments. These quick-fixes only brought temporary relief rather than actual wellness.

There are some “silent” symptoms of celiac disease that NOBODY talks about—the behavioral and psychological aspects of celiac disease. I was six when I experienced my first panic attack. At nine years old, I developed phobias to certain animals or situations. And at 14 years old I was diagnosed with generalized anxiety.

But there was no apparent reason for the anxiety I had suffered from a very young age. The only thing we knew was that my panic attacks usually occurred after parties or when I had too much pizza. This particular symptom of celiac disease was the one that prompted my family and I to seek out other opinions and to be more aggressive in our search for answers. Then came the next phase in my journey with celiac disease, the diagnosis.

How Does a Celiac Disease Diagnosis Make You Feel?

What Living with a Celiac Disease Diagnosis is Like?
What Living with a Celiac Disease Diagnosis is Like?
Graphic by Haydee Vanegas.

Let me start by saying that being diagnosed with celiac disease takes a long, long time. The symptoms I described above were part of my life for over 14 years. Up until the age of 15, doctors could offer no explanation for all my health issues. But with a diagnosis of generalized anxiety disorder at a really young age, we needed to continue searching. I had a lot of tests, but no conclusive cause was identified…until my quinceañera party.

It is traditional in Latin American culture to celebrate with a big party when a girl turns 15 years old. And like any other person in my family, I was going to have mine. But that implies a lot of gluten ingestion even before the party. After the party, the real chaos began. My health issues became bigger and my anxiety was worse than before. After a month of uncertainty, a new doctor suggested the cause might be celiac disease. This began the process of me being diagnosed with celiac disease. This involved months of tests and waiting for results.

Finally, I got my diagnosis, and it was one that not even this doctor had seen before: celiac disease. And that was when my life with celiac disease officially began. There was just one prescription: the strict avoidance of gluten for the rest of my life. Upon hearing this, we were completely lost

Living With Celiac Disease

Living With Celiac Disease.
Living With Celiac Disease.
Original photo from mytpm.com. Graphic by Haydee Vanegas.

Now, seven years after being diagnosed with celiac disease, I can actually explain and share my experience. At first, none of us could make sense of it—not the doctor, not my family. Think about it: by having to avoid so many foods, I was also losing so much more than that, including a part of myself. I lose traditions. I lose activities. I lose the normal things that other teenagers experience. But when you are lost, there is only one path. I chose research and learning.

My first years living with celiac disease were spent studying the condition, searching for answers and opinions and learning how to live with it. And after three years living with celiac disease, I had a new word to describe the experience: life-changing.

My life changed entirely with that celiac disease diagnosis. But I found new ways to live, and I learned a lot about myself. Perhaps the most important change was that celiac disease made me more patient and empathetic.

After seven years living with celiac disease, I now have another word to describe it: living. No matter how much things change, or how much you lose, you always find a way to continue living. Because struggle is a part of life, and every single thing you do for yourself is living. So no matter what your diagnosis is and no matter how much a disease changes your life, you’ll adapt, and continue living as I am living with celiac disease.