My Celiac Disease Diagnosis
Originally written May 4, 2020
May is Celiac Disease Awareness Month, so in honor of that, I decided to share my Celiac diagnosis story! As a trigger warning, I talk a lot about POOP in this story, and I get a little graphic at times so if that makes you uncomfortable, you might not want to read ahead. I want to be very honest and candid with you (that’s just who I am as a person), so I’m going to tell you all the very real things that went into me finally getting diagnosed. When I was first diagnosed and still learning about Celiac Disease, a lot of blogs and articles skipped over their exact symptoms and that wasn’t really helpful for someone who wanted to know other people’s experiences with the disease.
I was finally diagnosed with Celiac Disease in December 2018, as a senior in college. I remember being in the middle of working on a group project on campus when I opened the email from my doctor with the results of my blood work. I almost cried with happiness because I finally knew what was wrong with me and that I wasn’t crazy — there actually WAS something going on with my body!
Back up to September of 2018, I was at my primary care doctor for my annual check-up when I told her I thought I might have some sort of food allergy because I kept getting diarrhea and stomach aches after I ate. I was getting diarrhea multiple times a week. It just wasn’t normal for me, and I didn’t know what to do about it. I didn’t know if it was from college stress or if it was something I was eating.
During the years leading up to this point, I had noticed my stomach issues getting progressively worse. First of all, once I turned 20 I noticed I was bloated more often than not. I had always been a skinny kid growing up, but didn’t really think much of the bloating. I assumed bloating was just part of being in your 20’s, and my metabolism slowing down.
Sophomore year of college I drank a lot more, specifically beer, and I noticed that after I drank I would get stomach aches. I figured it was just alcohol in general and that everyone felt like this. My stomach aches were getting so bad that I would have to take a Tums before I drank and after. I always had Tums on me.
Flash forward to the summer of 2018, before I talked to my doctor about a potential food allergy, I got a case of food poisoning. I couldn’t hold solid food besides granola bars and oatmeal down for a good week. But even after my bout of food poisoning was over, my stomach still wasn’t back 100 percent and I was still getting sick* after I ate at least twice a week. I knew this wasn’t normal so I talked to my doctor about it and that’s when I started getting serious about figuring out what was going on.
My doctor had me keep a food diary for two weeks and record everything I ate and every time I got sick or had a stomach ache. After looking at the patterns, we thought maybe we should try cutting dairy out for two weeks and then reintroducing it for another two weeks to see if dairy was the issue. It was not, I was still getting sick regardless of dairy intake. We looked at the new food diary and thought it might have been something in Asian food (because I was eating a lot of Thai food). I cut Asian-food out for two weeks and then reintroduced it, but I was still getting sick. Finally, my doctor decided to do a blood test and a stool sample. Low and behold, my blood tests came back testing positive with soaring colors for Celiac Disease.
Just to confirm the blood test, I cut out gluten for two weeks and reintroduced it. Wow oh wow was the problem gluten! I remember eating a Starbucks panini after not having gluten for two weeks, and my stomach was in such pain! My doctor referred me to a gastroenterologist who did an endoscopy on me a few months later to officially confirm I had Celiac, which I do.
And that was that. I didn’t really have a mourning period for not being able to tolerate gluten like I used to because I honestly never really liked a lot of American glutenous food products to begin with. I never liked doughnuts; I never really liked American pizza; I didn’t really like grocery store bread. The list goes on and on. I was happy to cut it out and find substitutes for gluten products I do like. I will probably do a whole blog post for learning how to transition into a gluten-free lifestyle, but that is how I was diagnosed!
If you are at all familiar with Celiac Disease, you might be aware that diagnosis of the disease usually happens as a child, and it’s kind of weird that I wasn’t diagnosed until I was 21, and hadn’t really been showing tell-tale symptoms in my body until I was maybe 19 or 20 years old. According to my understanding of autoimmune diseases, you can carry the gene for the disease, but it can lay dormant until the person or body experiences trauma. I am no doctor or scientist, and I am not even totally sure if that’s actually how it works, but I do understand my own body very well. My stomach is generally affected under times of extreme stress. I remember back when I was 16 years old, after my father passed away, I experienced a lot of the same symptoms as that I did when I was 21, having a lot of diarrhea and unhealthy feeling poops. Eventually, that went away the more I accepted a life without my dad. When I was 21 I experienced another traumatic event that I’m not ready to talk about publicly yet, but I think it affected me and my body more than I realized at that moment. I truly think this incident was the tipping point of activating the Celiac gene in my body.
I also think my family has a history of undiagnosed Celiac Disease because many of my relatives before me developed illnesses later in life that can come from leaving Celiac untreated (continuing to eat gluten).
The key takeaway is to listen to your body! Bloating is not necessarily a natural part of being in your twenties! If you are not having regular and consistent poops, please listen to your body and try to figure out what is going on because that’s your body's way of alerting you that something might be wrong.
*sick means diarrhea in this context, I don’t throw up very much
These pictures are from 2017-2018, the two years leading up to my diagnosis, where I was beginning to notice something was off with my body. I was drinking a lot of beer and experiencing weight gain, bloating and a lot of stomach aches. Even if my body weight didn't change drastically, my face showed signs of weight change. I should note that I'm not sure how much of my weight gain and loss was due to fluctuating alcohol intake throughout college vs. eating gluten regularly, but I wanted to show some pre-diagnosis pictures (I'll probably do a post on lifestyle changes I made between 2018 and 2019 because that probably also played a role).