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:

machine

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.

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. 🙂

Advertisements

16 thoughts on “My (Accidental) Celiac Diagnosis & More

  1. I had a lot of weird symptoms (fatigue mostly, blurred vision, bathroom issues that I didn’t know weren’t normal, joint pain) that I thought could be Lyme disease or Chronic Fatigue or Fibromyalgia or Diabetes… I diagnosed myself with a lot of things before I found out I had celiac disease. Luckily I have a good doctor who is willing to run pretty much any test I ask her for. What finally led me to be tested was my mom saying she had Celiac as a child. Turns out that 40-50 years ago, they used to think that children with celiac were cured after 10 years gluten free. So my mom had never mentioned this before. I had read that first degree relatives should be tested so I asked for the tests. I was still pretty surprised to find out I had it. But after going gluten free, I felt a difference almost immediately, like within a few DAYS! So I am really happy about being diagnosed and finally having an answer to all the weird symptoms.
    Your situation sounds hard, but I bet you did save yourself a lot of trouble. Some people who don’t get diagnosed until a lot later don’t really recover even on GF.

    Liked by 1 person

    • Thank you for sharing! That’s really interesting that they used to think that celiac could be cured like that; I never knew that. I’m so glad that finding out you have celiac and going gluten free made you feel so much better. 🙂 I am happy that I found out about it early because, like you said, I’m sure I saved myself quite a bit of trouble in the future.

      Liked by 1 person

  2. My diagnosis was a long journey as well. I have my complete story on my blog page. The title is how I’m living with an autoimmune disease, I also have some of my gluten free favorites on my page as well. I hope you check it out.

    Liked by 1 person

  3. Anna, congratulations on your blog and gluten free successes! I like reading your personal prospective on celiac disease and your recipes. I am a registered dietitian and your stories help me to counsel others with celiac disease. Keep it going!

    Liked by 1 person

    • I know, my family and I always joke about how I may be 17 years old on the outside but on the inside I’m a 90-year-old woman, hahaha. And thank you, I try my best to share my story and hopefully help others by doing so. 🙂

      Like

  4. I shared the full story of my diagnosis on my blog, but honestly like you it was kinda by accident, my only symptom was that I got heart burn regularly and from that I got to celiac as well as some other things that I’m still being treated for.
    Overall now I’ve cut out gluten for over a month, I’m still quite new to the world and I can’t say I feel very much different… But now when I do have gluten it seems to affect me worse than it did before.!

    Liked by 1 person

    • I just read your story, and it sounds like our situations were fairly similar! Starting out was a big change for me, especially the first couple months where I had to try and figure out everything I can and can’t eat and adjust my diet. I look forward to reading more from you on your blog. 🙂

      Liked by 1 person

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s