My (Accidental) Celiac Diagnosis & More

I just realized that I never really talked about my diagnosis story yet on my blog. My story is a lot different than most that I’ve heard, largely because I never really had any symptoms at all, but one day in 2012 I got an endoscopy, and there it was.

Flashback to August 22, 2012: I woke up feeling super nauseous, too sick to go to my tennis practice. The next day? Still super nauseous, and getting on a plane to California—which came along with the pleasant experience of throwing up in an airport bathroom (I know, ew). The next day, and the next day, and the next day…still consistently feeling terrible. This went on for about two weeks, which was when we decided something was wrong and I went to the doctor. I was admitted to the hospital to figure out what was going on. This lovely hospital visit also made me miss my first days of high school (sad face). I think I was there for about a week, undergoing plenty of tests to find the problem. What was difficult about my situation was that my only symptom was nausea, and that was so broad that it really could’ve been anything. I was even getting my head scanned to see if it was a brain tumor. Literally, it could’ve been anything. I was getting shoved into big scary machines like this one:

Then came the endoscopy. They found damage that was consistent with celiac disease. And they said “you’ve got celiac, don’t eat gluten and you’ll be all better, bye!” Okay, maybe that’s not exactly what they said, but that’s what I heard.

Well then I had to figure out what the heck gluten is. I found out it’s in wheat, barley, rye, and malt. That was fine, I could manage. Then I found out that stuff is in pasta, bread, pizza, cake, cookies…I think my exact thinking was, “what the hell CAN I eat??????” At first I didn’t really understand the full extent of what I had to do. I specifically remember one day that I went to a friend’s house, and they were serving something like loaded potato skins and pizza bites. Obviously I knew I couldn’t have the pizza bites, but I thought, “hey, potato skins are probably fine.” So I ate them. A bunch of them. Current Anna is violently yelling at Past Anna for not asking to see the package to check if they had gluten in them. Because it may sound like something is gluten free, but now I know that doesn’t mean it is gluten free. I don’t remember if I had any reaction, but I still think about that day sometimes and remember how I ate those stupid potato skins and knew as I ate them that I should’ve asked.

Enough about potato skins now. So after I was diagnosed, nothing got better. I still had the nausea everyday. That’s when we went to the Children’s Hospital of Philadelphia.

I’ll give you the short version of this part. There, I was also diagnosed with gastroparesis, which means my stomach was working really slowly, and went on to try many different medications (13 to be exact) to attempt to make it better for about a year and a half with no luck. Eventually, in April of 2014, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (aka POTS), a dysfunction of the autonomic nervous system that causes symptoms like dizziness, fatigue, heart palpitations, migraines, and, guess what else, nausea. I got all those other symptoms later along with the nausea which is what lead to this diagnosis, and I’m still dealing with this condition today (which was most likely causing my problems all along). And to be honest, celiac is nothing—it’s like a walk in the park—compared to POTS.

So in comes the (Accidental) part of my post’s title. I’m 98% sure that if I hadn’t started to have other medical issues in 2012, I wouldn’t have been diagnosed with celiac. Not then, at least, probably not for a long time. I get annoyed sometimes because that means I probably could’ve been eating delicious gluten for so much longer, but then I remember that would’ve just caused more damage in the long run. I think because being gluten free never made me feel any different, in the beginning I didn’t get the point of it. This is where I think my situation differs from most; I feel like a lot of the stories I hear go something like, “I was feeling really bad, I got diagnosed with celiac, and I feel so much better now!!” This wasn’t me. Of course now, whenever I accidentally get glutened, I feel it. But yet I’m still compiling a list in my head of gluten foods that I will one day maybe use for a gigantic eat-whatever-I-want day that will make my small intestine very angry at me…

Anyways, that’s me. What’s your diagnosis story? Tell me about it in the comments. 🙂