Discovering I Have Celiac Disease
How did you find out that you have celiac disease or gluten intolerance?
Here's my story of discovering that I have Celiac Disease. October will mark three years from the first doctor's appointment that led me to discover that I had Celiac Disease. I am so thankful that I was diagnosed and was able to start treating the disease instead of continuing to mask my symptoms.
I wanted to share my story to help others who may be scared to ask for medical advice take the first step by beginning the conversation with their medical provider if they think something is wrong with them.
I had been suffering from multiple symptoms that had progressively gotten worse over time. I had finally reached a point where I realized; this is not normal. And my symptoms seemed to get worse no matter what I did.
Looking back after I was diagnosed, and now know the different symptoms that are related to Celiac Disease, I would say that I began to notice signs of the disease when I was in college. That was four years before I made that doctors appointment that led me to my diagnosis.
I can vividly remember walking from to my car after my classes had ended and thinking to myself, something was wrong with me. I just felt so drained, fatigued, and I suffered from brain fog. It was as if I was not entirely there. But, I did nothing about it. I just dusted it off and went on my way through life.
As the years went by, I had started my career as a marketing professional in an office environment. I would pack my lunches for work to save time and money. My meals usually consisted of spaghetti or other pasta (because it was cheap, consisted of only 2 ingredients, and took less than 20 minutes to make the night before) sandwiches, salads, or chicken and rice. At the time, I thought I was eating pretty healthy and was confused by why my stomach would consistently feel so bad.
Now, I have to admit my weekends included a lot of pizza, nachos, chips, and fast foods whenever I would go out with my friends. So, when my stomach started to feel bad, I kept telling myself that I need to eat cleaner foods.
Despite how "clean" I tried to eat, my symptoms never got better. Right after I came back from my lunch break, my stomach would start gurgling like clockwork. My coworker and I would laugh and make fun of it, but honestly, I was self-conscience about it.
Then the sleeping problems began. For me, that was one of the most unbearable symptoms. I would go to bed around 10 pm, and again, like clockwork, I would wake up every night around 2 am wide awake unable to go back to sleep. I would stay awake for about 2-3 hours and then fall back asleep about 30 minutes before my alarm went off. And when my alarm did finally go off, it was down right impossible for me to wake back up.
I began to google my symptoms to try to figure out was wrong with me. This was a major mistake! It only terrified me more and did not lead me in the direction of Celiac Disease at all. Terrified of all the things that I could possibly have according to the internet, I made my first appointment with a primary doctor since high school.
Typically, I am not one to speak up when something is wrong, nor am I someone who opens up to reach out for help. Going to the doctor scared me. I felt vulnerable about speaking up that something was wrong because I was terrified that the doctor would tell me something was wrong.
At my doctor's appointment, I was transparent about all my different symptoms, no matter how embarrassing they sounded. This was my first appointment with this particular doctor, so it was really awkward to admit all of these things to someone I just met. But I knew something wasn't right with me, and the first step to getting better was to have an open and honest conversation with the doctor.
The doctor asked me questions to help her understand and narrow down what might be wrong with me, such as if I had skin rashes or joint pain. Her first guess was that I had IBS. Hearing that was discouraging for me because my mom suffers from IBS, and I knew that there was no real treatment for it. But to be safe, she ordered about 10 different lab test to rule out anything else. One of those tests was the tTG IgA antibody test.
About one week after I had my lab work done, I got the dreaded phone call from my doctor that they had received my results and they want to see me again in the office. From the time that I received that call to the time that I had my follow up appointment, I was a major mess freaking out about why they would need to see me again. My brain was flooded with all the different things that could have been wrong with me. Not one of those things that crossed my mind was Celiac Disease
When I went to my follow up appointment, the doctor let me know they received all the test back and they were all normal, except for one. My tTG IgA antibody test came back positive for Celiac Disease.
The doctor gave me a pamphlet that briefly explained Celiac Disease and gave me a referral for a Gastroenterologist Doctor. She told me that GI would take care of me from there and let me know that I needed to go on a gluten-free diet.
At this time, I had no idea what Celiac Disease was, and I certainly did not know what gluten was. I had only heard about gluten because it had become a popular diet trend, but besides that, I knew absolutely nothing about it. Obviously, I had a lot of reading to do.
I began to transition to a gluten-free diet for about a month, still trying to figure out what the heck "gluten" was. When I had my GI appointment, I had to re-explain all of my symptoms with her. She did an initial physical examination where she pressed on my stomach and asked if it hurt in a specific location. And indeed it did. She let me know that this is common in patients that have Celiac Disease because it was where the small intestine is.
The GI let me know that they would not know for sure until they confirmed it with an endoscopy examine, and to do this, I would need to remain on a diet that included gluten.
This was a tough time for me because I was just getting used to a gluten-free diet, and now I had to stop it. However, the reality was beginning to set in that I may never be able to enjoy all the gluten-filled foods that I loved ever again, so I ate Papa John's pizza almost every night the week before my endoscopy appointment.
When I woke up from my endoscopy, they let me know that by looking around the intestinal tract, there was no visible sign of damage from the disease. This was hard to hear. My first thought was, if it was not Celiac Disease, then what was causing all of my symptoms? However, the GI did let me know that they took a biopsy of my small intestine, and once they get the results from that, it would confirm if I had the disease or not.
So another two weeks go by until I get a call from the GI's office. The nurse let me know that they got the results back from my biopsy and that I did indeed have Celiac Disease. She told me that I needed to continue to follow a gluten-free diet, and that was it, our conversation ended.
I was left in the dark with so many unanswered questions. Yes, I finally knew what I had. But I was not given any advice on what was next. No one told me what follow up steps I needed to take, or what my quality of life would be now that I had this disease.
Throughout this process, I am beyond grateful that I took my health so seriously and sought out medical advice when I had a gut feeling (pun intended) that something was wrong with me. I also felt so lucky that once I sought out help, the overall diagnosis was so quick. After reading about Celiac Disease and how it normally takes up to 7-10 years to gee diagnosed because it is so easily mistaken for something else, I really do feel blessed that I have answers and know how to treat my symptoms.
Below is a list of symptoms that I suffered from and I now know are related to Celiac Disease:
sharp stomach pain
failure to thrive
skin problems including acne/skin rashes/eczema
Joint pain (only started to notice this one recently after I went on a gluten-free diet. When I accidentally eat gluten, I can usually notice because my thumb joint and big toe joint start to ache.
After a month of fully going on a gluten free diet, I began to sleep like a baby. I no longer woke up in the middle of the night. I also noticed my stomach pain had improved tremendously and only acts up if I get "glutened". In addition, my hair began to grow back in areas that were thinning out, my nails grew out thicker and longer, my skin cleared up, and my bloating disappeared. And most importantly, my digestive tract seems to be back to normal!
I never would have guessed that all of these symptoms were related to something as small as "gluten", partially because I had no idea what gluten was! Before being diagnosed, these symptoms were just part of my life and I had excepted it. Now that I have gone on a gluten free diet, I know what it is like to feel normal, and that is truly amazing. I don't want anyone else to go undiagnosed and just accept their symptoms as part of their life. I hope by sharing my story, others who are experiencing the same symptoms that I had, they will be brave enough not to continue and ignore those symptoms, but rather to take the first steps and ask their doctor what is going on with their body.