Tuesday, May 10, 2011


Everyone loves food. As Americans, we can be a little obsessed with it. Eating becomes a hobby. But in reality, eating is a necessity. For me, eating is potentially a risk. Unfortunately, ME has its "bonuses" it likes to throw at me. One is an intolerance to gluten. Gluten is in wheat, barely, and rye... most of the foods we eat contain gluten. When this intolerance first hit me, I was living off of rice cakes. Thankfully, I now have more knowledge and access to groceries I can eat (and enjoy!).
My GI doctor skeptically asked me how I first "knew" I had this gluten-intolerance.  When I say it hit me, it hit me. It knocked the wind out of me. I woke up with a swollen and hard belly. And it hurt! Keep in mind my pain tolerance is pretty high these days. I had pain with my cysts. I've had three operations on my spleen to remove those cysts, and the pain that follows abdominal surgery has been compared to giving birth. Abdominal surgery HURT. I had to learn how to walk again after! Now, I get an IV once a week. At least one needle is shoved into my veins every week... Sometimes, it's more than once if I need blood-work or tests done. I do self injections every other day. I'm willingly stabbing myself in the thigh with a shot! Plus, I'm dealing with a chronic headache and sensitivity to light and sound and smells and blah. Sorry about this painful rant.. but when I thankfully went to the hospital for some relief for this reaction, I knew it was bad. I would rather have surgery again. Or another needle poked into me. Or stub my toe against a door way. Anyways, It was very frustrating to have a doctor look down on me and look past my conclusions. I told him my symptoms. I explained to him my own test of a handful of seemingly harmless Goldfish Crackers.. and the rough night that followed that experiment. After he so rudely dismissed my history, he then asked me to go back on a diet with gluten.
Besides the pain, there is a lengthy list of symptoms that occurs after I eat gluten, and more recently, dairy. It's all the lovely and embarrassing symptoms. I get sick to my stomach a lot. I become feverish. I can't go out to eat without being that high-maintenence salad girl. My stomach can be such an attention-whore...
This gluten intolerance is often referred to as Celiac's disease. If I eat gluten, it damages my intestines. It's an auto-immune response my body has developed from this disease. Besides staying away from gluten, I can't eat dairy or too much sugar. After I eat dairy, I become immediately and extremely nauseous. The sugar counter-acts my supplements I'm taking for daily energy.
So, I'm up right now with a knotted and painful stomach. I hate to complain so much when so many others are dealing with this same problem... Honestly, my attitude went a little sour when ME took away my favorite foods! It's easy to get frustrated when you lose control over your body, but I refuse to let a disease get in my head. I look at eating as somewhat of an adventure now! I meet interesting people in the health food stores, anyways. And if I get a reaction, I deal... by writing whiney posts (sorry). Tonight, my angels have again reached out. The pain passes away with the time. I'll hopefully get to bed here soon. When I wake, it's a new day. It's also ME/CFS awareness week. With awareness, comes a cure! And fewer ignorant doctors.


  1. Don't worry about complaining Sara, You're going through a lot. It's almost necessary. I mean, You can't keep that bottled up. That's what your blog is for. (:

    Keep up the good work Sara, and stay strong!

  2. Thanks for the never ending support, Jake!