I began experiencing celiac disease symptoms at a very young age, but wasn’t diagnosed until my early years of college. It has truly been a journey, and oddly enough it has taught me a lot about myself, health & wellness, and even relationships, friendships, and kinships. I have been aware of my diagnosis since 2016, but am constantly learning about the disease, and feel there is much more to learn about that we have not yet discovered. Though it can be upsetting, challenging, and painful, I have learned to enjoy the journey and creativity that comes along with it.
Reflecting back on the pain and suffering I went through prior to getting a diagnosis is overwhelming, and I’m sure many celiac disease patients have similar stories and feel the same way. This is my celiac disease story.
Some information may be TMI, but I know there are others who have struggled with the same symptoms, and want them to know they are not alone.
The Start of Celiac Disease Symptoms
I began experiencing celiac disease symptoms for as long as I can remember. The doctor appointments began at 5 years old and I vaguely remember snippets of struggles from then on. The first situation that I clearly remember was around the age of 5. We attended a family party where the homemade fudge brownies caught my eye. I don’t recall feeling sick until late that night. My parents set up a bed for my brothers and I, and we slept in the living room as we did most weekends. It was something we loved to do while we watched our favorite movies. However, this idea became stale as I woke up in the middle of the night covering the bed with puke. This was the start of many episodes.
I also remember my parents threw a birthday party for me and my twin brother’s 6th birthday. It was tiresome, but a fun-filled day with family and friends, cake, and gifts. As it started to get late, and the party died down, I fell asleep on the couch and was soon woken up by my father who instructed me to go to bed. On my way up the stairs to my bedroom, I began to puke and my father hastily carried me up the stairs to my bathroom.
The symptoms began to get worse as I got older. I attended many doctor’s appointments and missed many days of school. Tests and an endoscopy were done and we didn’t hear back from the doctors. This meant nothing was found, however, at this time celiac blood tests were not done.
10 years old
Year 5 in grade school was when symptoms heightened, I was about 10 years old when celiac disease symptoms reached the worst they had ever been. Stomachaches were almost every day and they were awful. At one point we assumed it was the acidity from spaghetti sauce, so I completely eliminated everything that had spaghetti sauce. Little did I know it was gluten-filled food that typically had spaghetti sauce like pasta and pizza.
As symptoms got worse, I gained a significant amount of weight in a little amount of time and experienced constipation for the first time. My mother kept me home from school for one full week and stayed home with me. I’ll never forget the fourth day of being constipated. She told me to go to the bathroom and closed the door behind her. “Let me see your tummy.” She said, and I did so as she lightly pressed against my stomach. It was rock hard and I think she could see how uncomfortable it was. I will never forget how worried she looked as she rushed out of the bathroom and called my father, who worked on the road.
My father came home the following day and gave me a suppository. I used the restroom within hours but struggled the following days. Surprisingly, symptoms changed drastically within the next several years.
I attended many more doctor’s appointments, but it seemed like we were going in circles. Doctors definitely weren’t taking my symptoms seriously and should have been looking much closer. There came a time when my doctor briefly mentioned a gluten-free diet. My mother put me on a gluten-free diet, but at the time I wasn’t interested in gluten-free food, and we weren’t educated enough on every aspect of following a gluten-free diet so I was still experiencing symptoms and discontinued the gluten-free diet.
Oftentimes, I wonder how different my upbringing would have been if my doctor would have decided to take it one step further and test me for celiac disease. It’s safe to say I wouldn’t be dealing with the ongoing symptoms that I am still dealing with if my doctor were to test me right then and there.
12 years old
When I was 12 years old, I lost a significant amount of weight, and doctors explained it was normal as I entered the early years of puberty. I also received my first menstrual cycle; however, it disappeared for many years after that. Oddly enough, within the early years of being a teenager, celiac disease symptoms became much more tolerable and occurred much less than they ever did. Though this was very odd and symptoms came back much stronger than ever as I entered adulthood.
16 years old
Age 16 is always an interesting year. You don’t know it yet, but you’re becoming a person of your own — your own interests, hobbies, friendships, relationships, and experiences that ultimately play a role in who you become as an adult. This was when my celiac disease symptoms came back full speed, and I was struggling badly, though at the time I barely noticed. The intense stomach pains were back and I began to experience celiac disease symptoms that I have never experienced before.
17 years old
I started my first job as an assistant to a tax accountant, where the owner would shower me with delicious homemade meals. I realized each day I’d be rushing home because of my stomach pains, bloating, and urge to use the bathroom. Of course, each day I experienced these symptoms but hadn’t noticed how bad they were until I was in a place where I didn’t always have access to a bathroom, or a bed to lie down in.
It became exhausting attending high school, going to work, and getting home late to deal with these celiac disease symptoms all night. One night I was woken up with extreme stomach pain and grabbed the closest thing to me — a large bowl. I began puking my guts out and woke my mother up in the process of it. I puked so much it filled the bowl, and I was worried it would overflow. Beyond that, the smell was horrific, and surely there was no reason for this to be happening. I once again could see the worry on my mom’s face. To my surprise, I woke up feeling fine and went to school that day as though nothing happened. Shortly after this incident, I went to the doctor where they instructed me to avoid spicy foods.
18 years old
At age 18, I had reached a point where celiac disease symptoms were truly dictating my life. I was leaving the gym in the middle of a workout, avoiding social events, finding excuses why I wouldn’t eat while at parties, the list goes on. I was even feeling guilty for the people involved in my life. I had plans one night, and vividly remember how mad the person I had plans with was when I couldn’t make it to the car for a movie because of the intense stomach pains I was experiencing. One thing celiac disease has taught me is to cut out the people who aren’t willing to support you during tough times.
I started college in the fall after graduating from high school and struggled with severe symptoms. The celiac disease symptoms I was experiencing most often were: Stomach pains, diarrhea, bloating, gas, nausea, extreme brain fog, restless leg syndrome, itchy legs, feeling tired and fatigued 24/7, and the inability to gain weight. I went to the doctors and he told me I was a teenager entering adulthood and symptoms were normal. I did a few blood tests and found out I was anemic and began taking iron vitamins. After a few months, symptoms got worse and worse.
I made an appointment with a different doctor and my father went with me. The doctor pulled up my medical records and began to review my endoscopy from when I was 5 years old. Looking at the pictures, the doctor pointed out the stomach ulcer I had which was news to us as we had never been informed of the ulcer. He prescribed me medication and instructed me to avoid chocolate, spicy and acidic foods, and rich foods. Was this going to help my stomach 13 years later? Did I still have an ulcer? Was the ulcer the reason why I had such intense stomach pains? I had so many questions and the doctor reassured me to take my medication and follow a simple diet, and the ulcer will go away. Reflecting back on this situation infuriates me and makes me think how absurd doctors are, and how naive I was for believing them.
19 years old
I was in college by the time I discovered my autoimmune disease. The stomach ulcer medication didn’t seem to be working. My symptoms weren’t going away and now I was struggling with them in college. I made, yet again, another doctor’s appointment for the symptoms I had been experiencing since I was 5 years old. The doctor mentioned the idea of performing another endoscopy, and I was all for it. Though at this time, I felt hopeless and thought this would be another failed attempt. Luckily, I was wrong.
Shortly after my endoscopy procedure, the doctor informed me that I had excessive inflammation in my small intestine and ordered celiac disease blood tests. Weeks after I did the blood tests I received a call and the nurse politely asked to speak with me. I knew right then I was going to receive news I dreaded, but hoped for for so long. She informed me that I tested positive for celiac disease and advised me to make an appointment with a nutritionist as soon as possible.
After my Celiac Disease Diagnosis
Finding out that I had celiac disease wasn’t hard for me. In fact, I was beyond relieved it wasn’t something much worse, and I was glad it was just a diet change. What was hard for me was the adjustment. Though I met with a nutritionist, I was still lost on how exactly to navigate my life with the disease.
I was still experiencing symptoms, and for the first time, felt as though I was going to pass out after eating out with some of my colleagues. I wasn’t aware of cross-contact and its effect on a celiac disease patient. The brain fog was terrifying and brought on another level of anxiety. My medical resources failed me and I quickly began to realize that I would need to learn as I go, as much as I can. I quickly learned doctors and medical professionals are not safe to rely on, or at least my doctors, as they were not celiac disease specialists.
The following years after diagnosis was hard but manageable. I was finally able to gain weight, most of my celiac disease symptoms slowly vanished, and I learned which food and restaurants were safe for me and which ones weren’t. The only thing I struggled with and still find myself struggling with is trying to fit in.
I learned many lessons when others in my social group didn’t want to make adjustments for me when deciding on a trip, or a place to stop and grab food at. I am still learning how to maintain a social life without having anxiety take over. The majority of the time, I am able to enjoy myself and am fortunate enough to have a supportive family.
Though I would much rather live without celiac disease, I am grateful for the support and resources I have access to. Celiac disease has made me realize I have one thing not very many people have — willpower. We have so much strength and are challenged every day of our lives. With each year that passes, I learn more and more about celiac disease and enjoy sharing it with others to help them along their journey.
