Saturday, May 17, 2014

A diagnosis at last?

Two years ago this month I began a magical, fun journey of being sick but having no diagnosis. I spent the better part of the last year researching and asking questions and playing with diets and feeling like crap, and, honestly, I'd just about given up on doctors. After being deep in the throes of major "episodes" during most of December and January, and then again in February, March, and April, I finally decided this was the year we would figure this out.

I am tired. I am tired of being sick. I am tired of being sick and tired.

So I started having tests run. When I was unhappy with my doctors, I fired them all and found new doctors. I put down my entire history and all my symptoms and pushed forward until I found doctors who listened and understood, and oh what a difference that makes. The worst part of this is not the abdominal pain. The worst part has become the constant tiredness, the confusion, the lack of attention, the anxiety. My brain has suffered much more so than my gut has.

After test after test after test, the're finally pretty sure it's (at least) celiac disease. Two years ago it wasn't even considered as a reasonable diagnosis because my blood antibody tests were negative, but now they're about 90% sure (although they are not ruling out comorbid diagnoses just yet.) I went gluten free for about eight months last year and felt better, but there were other foods that seemed to make me sick as well, not just gluten. The doctors have now put me on a super-restrictive diet (think low-FODMAP, gluten-free, alcohol-free, caffeine-free, low-red meat) and I honestly don't even know what to eat anymore. I have a pretty steep learning curve for this one, considering my previous meals were primarily made of caffeine and cheeseburgers. Thank God potatoes are still safe. Maybe I can just live off them the next three months!

My saving grace this year, as far as treatment is concerned, is how awful my blood work looked. I have friends with similar symptoms to mine but they aren't taken seriously, but my blood work definitely has reflected significant malnutrition. An endoscopy showed signs of GERD, and most importantly, blunted duodenal villi permeated with leukocytes. I've had multiple iron transfusions as well as weekly B12 injections, and the doctor promises me if I stick with the diet I will feel like a new person soon.

Oh how I hope that is true. I've felt like a very old, overwhelmed person for way too long now.

A diagnosis has been a long time a'coming. Here's to being that annoying person at the party with the dietary restrictions! I'll bring the lactose-free quinoa cookies that no one wants.

(Any favorite recipes would be appreciated! Low FODMAP just seems to be so low fun!)

So, onward to better things!


Emy Watson said...

What causes cancer and what is cancer?
Cancer Organizer (30)

Emy Watson said...

Do you believe God has a plan for everyone?
Cancer Plan (140)