Back in the day, when I was a junior in college at the University of Wisconsin-Madison, my body stopped digesting food properly. I had daily (hourly) symptoms that involved running to the bathroom quite often and insanely painful stomach aches. I went to several doctors who all told me, "It's probably just stress!" or "Are you SURE the symptoms have lasted this long?" I lead myself to believe that I was a nutball and if several doctors couldn't figure out what was wrong with me, then I must be fine. I lived with intense symptoms for about a year and a half. Eventually I lost my freshman 15, which, frankly, was just fine with me. I wasn't able to concentrate very well, I was pretty irritable (apologies to old college friends), and I liked to sleep more than a normal person should. I couldn't climb a few stairs without dizzy spells. This brings back a memory of my mom sitting down with my roommate, Ann, telling her to make sure I drink lots of Gatorade so I don't pass out.
I had a series of pretty bad migraines that got me to the doctor at UW. They told me it was stress. A few months later I went in because my hands were starting to tingle all the time. I got this really young doctor (intern?) who looked back at my chart and saw I had been in for other symptoms and asked me if I still had the same problems. I told him that I most certainly did. He sent me to get a blood test. I don't really remember (that whole time in my life is a blur), but I must have come back for a separate appointment where he sat me down and said, "You have Celiac disease." I was super confused and before I could start crying, he told me the treatment is not to eat wheat. I didn't know what wheat really was. Okay, no wheat bread, whatever! He told me to make an appointment with my gastroenterologist for a biopsy of my small intestine (endoscopy) and to go home and read a few pamphlets on gluten free diets. This must have been November of 2003. (Side note: when a doctor gives you a list of things to do, why don't they write it down and let you take it with? I was clearly verging on insanity and I'm surprised I didn't just go home and forget what he had told me. Now, I bring a notepad and take notes at the doctor.) Years later, I wish I knew who this intern was and could give him a big hug for being intelligent enough to do the right test!
I went home that night and told my five roommates what was up. We went through my shelf in the pantry and looked at the ingredients on all of the labels. Wheat was in EVERYTHING! I think I was left with a fruit cup, a gallon of milk, and some ice cream. We went grocery shopping and I remember spending forever in the cereal aisle trying to find something I could eat for breakfast. No Lucky Charms, no Cheerios, even Rice Crispies and Chex had malt flavoring. Suddenly I could no longer involve myself in ordering in pizza or Chinese food or even drinking beer, which is exactly how everyone dreams their senior year of college in Madison will go, right?
I went home for Christmas break and my mom had managed to get me in for an appointment with my ridiculously overbooked GI doctor who had treated me in the past for acid reflux. I hadn't seen her the entire time I was actually having Celiac symptoms because whenever I called to make an appointment, I would need to wait six months to see her, so I just never made one. We did an endoscopy, which is a procedure where they put you out and stuff a tube down your throat to take pictures. This time, she took a biopsy of my small intestine. (Anyone else ever had an endoscopy? I swear, I wake up every time, mid-procedure.) The results confirmed the blood test, I not only had Celiac disease, but my small intestine showed very obvious damage and scarring that would take a while to recover. She had found no neurological damage, which was good news considering my severe lack of nutrients for almost two years. She mentioned that when I had gotten my last endoscopy several years earlier, that I showed vague signs that I may have Celiac disease, but she either never mentioned them to me or I just never took note of it. It's also possible, I guess, that she didn't notice it at the time, but was innocently commenting on old pictures. Imagine if the doctors in Madison had access to my medical records, or if my actual doctor wasn't too busy to see me, I could have avoided years of discomfort and permanent intestinal damage!
I finished up my senior year, graduated with my first college degree, worked all summer in a factory in Fondy, and moved to Colorado for graduate school where I knew no one. My gluten free diet in no way made me feel any better. The dizzy spells had stopped, but I still had severe stomach symptoms and general lethargy upon my move to Colorado and several years after that. Today I feel more like myself, but am certainly not symptom free. I'm no where near as sharp as I used to be, mentally, and physically, I still get occasional weeks with stomach issues and I have dealt with a slew of other health issues along the way.
I eventually educated myself on the topic and figured out this whole gluten free diet. Life after Lucky Charms didn't have to be pure torture, and today I live happily gluten free! I'll give you some Celiac facts in another post for those of you looking for details beyond my personal story.