The Background Story: Part 2

My health story now brings us to the college years. If you haven’t skimmed Part 1, you can find it here. There are semi-embarassing pictures of me from long ago. You’re welcome.

College was pretty uneventful until about two weeks before I got married in 2006, after finishing up my Bachelor’s Degree. The only other notable occurrences in the meantime were a trip to Florida with my high school BFF during which I had a nasty GI bug (#trigger) and required vaccines prior to my clinical rotations (#trigger).

florida flu
The ill-fated (literally) Florida spring break trip. We got outside the bathroom for a day at the end of the week! P.S. I think my heart belongs on a beach.

I somewhat suddenly felt like I had an elephant sitting on my chest and it was uncomfortable to breathe or swallow. It was not “wedding stress” as was suggested by several people. It reached the point that I went to see my family doctor (the one who didn’t know why I was anemic). After checking my lungs, he declared that it was not a breathing issue and was, therefore, my esophagus. So he stamped it GERD, gave me the requisite PPI, and sent me on my merry way, never mind the fact that I had never experienced acid reflux symptoms.

wheat thins
Silly wedding day face! Note the Wheat Thins. Yuck. Always hated those things… Funny what your body subconsciously knows before you know why! Pretty sure I attacked that cheese, though.

I kept waiting for the PPI to do something… I tried several different ones to no avail. I finally quit them out of frustration and experienced acid reflux for the first time. Ugh. I went back to the doctor in an attempt to get more answers and went home with a referral to a GI doc. After waiting six months for the appointment, I found out that their office didn’t accept my insurance. Handy. So I waited another six months to get into a different office.

In the meantime, my health quickly deteriorated. I first noticed mental symptoms–unrelenting anxiety (especially related to the spasming esophagus feeling), a return of the depression I had fought during SSRI withdrawal, and a brand new experience called PANIC ATTACKS. I remember the first one vividly. I was sitting in class when I could feel my chest tighten up and it was harder to breathe. I started sweating and feeling dizzy. All of a sudden, I had a terrifying feeling that something was wrong with a close friend of mine. I grabbed my cell phone the size of a toaster and hightailed it to “the bathroom” (my excuse for leaving) where I proceeded to call my friend, who mercifully answered, and make up some random question as an excuse for calling.

That was the first of many panic attacks, including an epic one in the shower one morning when I became convinced that the sun wasn’t going to rise that day. That was the day I knew I was “going crazy” and something was seriously wrong.

Over that nearly-a-year period of waiting for the GI consult, I became unable to drive or ride in a car without panicking. My hotrodder husband did not understand that his frequent driving shenanigans were making the situation worse, bless him. I was unable to sit and focus, which made studying almost impossible. I had to constantly distract my brain to avoid panic, so I would play spider solitaire on my laptop while watching TV or having a conversation. I began knitting a scarf and doing crossword puzzles during class so that I had a hope of focusing. I started to see a psychologist at home and a counselor at school, neither of whom had much to offer me, hard as they tried.

I knew something was wrong, but I literally had no idea what it was. I tried on every diagnosis we learned about in school, but none fit. I tried to research anxiety disorder online but found basically nothing except some expensive As Seen On TV DVD program. I was unwilling to try antidepressants (again).

I eventually developed stomach pain every time I ate, but I thought it was “stress related”. I did have some episodes of running to the bathroom, but that was no surprise, as I was “going crazy”. I found slight relief when using a progressive relaxation CD the psychologist gave me, but that basically just gave me a better nap than usual. (Actually, that sounds really nice right now. I wonder if I still have that CD…)

I developed a weird blistering rash on my fingers and toes that itched and burned. In May of 2007, I went to see the family doctor about it. He biopsied it out of curiosity.

An example of the blistering rash I had on my fingers and toes. Sorry. But hey–I could have posted a much grosser picture! This is actually a pretty unlikely location for dermatitis herpetiformis to manifest, but I pride myself on being unconventional.

Later that week was the long-awaited GI appointment.  I almost canceled. The esophageal problem paled in comparison to the other symptoms I was now experiencing.

I’m glad I didn’t cancel.

I walked into that appointment feeling like I was wasting my time. I didn’t care about a little chest pressure and trouble swallowing when my sanity was crumbling around me. The doctor asked when I had last seen my primary care doctor and I told him I had just been there the previous week for a biopsy of my toe blisters. He said “Hmm

One of the few pictures I have of myself during “The Lost Year” between the beginning of symptoms and diagnosis. Not sure if that’s because I took very few pictures or if I just can’t find them…

…”, then chuckled as he asked to see my toes. “I haven’t looked at a patient’s toes in probably ten years,” he told me. I was skeptical but took off my socks. He said, “I think you have Celiac Disease,” and promptly left the room to presumably do something with my chart.

Now, I had never heard of Celiac Disease. You have to remember that this was way before ubiquitous smartphones. Dr. Google couldn’t give you instantaneous answers back in that day. I sat there and didn’t know what to think. What the hell is Celiac Disease? Is that some form of cancer? Why am I almost done with a health profession curriculum and I’ve never heard of it? It must be really rare.

Irony– I had skipped our Pediatrics class that day to attend the appointment. Lo and behold, I found the ONE passing mention of Celiac Disease in the entire six-year pharmacy curriculum in the notes from that day.

I finally got my explanation when the doctor returned and told me that I simply had to stop eating gluten. I can’t even tell you the relief I felt that there WAS something wrong and that it didn’t seem serious. How easy! Just stop eating gluten!

Little did I know that that was only the beginning of the story.

3 thoughts on “The Background Story: Part 2

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