Who told the Glutino people that that was an appetizing sounding brand name? Gah.
I scoped out the GF section of the Giant Supermarket yesterday. Pretty good selection, I have to say. If I had to go undiagnosed for 25 years, the silver lining is that there are way more foods to choose from now than there were then.
I'm on a mission. For our family excursion this week, I needed to ID and acquire easily portable, non-refrigeratable GF food. I bought some tapioca bread and some me-specific peanut butter and jelly. The bread is not very good, but should be a sufficient delivery vehicle for said food staples. I also have some chips and fruit. And, the old fashioned amusement park where we are going says they have a GF menu. Vegan and GF? I'd be thrilled and stunned.
I'm learning tons of stuff. Like: Celiac is not an allergic response to gluten, it is an auto-immune disease. My immune system is not attacking gluten as a foreign harmful invader. My immune system in the presence of gluten is attacking the epithelial cells of my small intestine. Who knew?
So when I was twenty-one, I drove from Stillwater ot Oklahoma City to a mall to donate blood so that I could have a chance to win tickets to a Heart concert. I had organized blood drives and donated in high school, so the donating blood was no big thing. Heart tickets WERE a big thing. [I had already had a torrid love affair with my high-school-best-friend-turned-freshman-college-roommate, but hadn't consciously figured out the whole lesbian thing yet.] I was surprised when the technician, after a finger stick, reported that I was anemic and wouldn't be allowed to donate. Shit. No blood, no chance to win the tickets.
On the drive back to Stillwater, I had some weird back pains on my left side. I was very uncomfortable and had no clue as to the problem. When I got back to my rented house near campus, I did what any normal college girl would do: I ordered pizza and drank beer with my [platonic] roommates. The pain worsened, and to shorten what I tend to make a very long story, by the end of the night I was diagnosed with a kidney stone and released from Stillwater General to go home and pee through a funnel.
By the next day the stone still hadn't passed, so my mom came and got me with the intention of seeing her doctor the next day. The pain was so bad that she ended up driving me straight to the emergency room. To shortened this part of the story, these docs noted that besides the kidney stone, I was severely anemic and that maybe I had bone cancer, so they did a bone marrow biopsy. I will tell you that having a bone marrow biopsy will definitely take your mind off a kidney stone. Bottom line: No cancer. My anemia was chocked up to my being a menstruating college girl with a questionable diet. I was omnivorous at the time, but did not pay particular attention to eating balanced meals. We were all satisfied with that conclusion. The kidney stone was surgically removed (the operating room story is one for a different day), and since I was hooked up to all those IV's anyway, they gave me iron intravenously. Five days after I was admitted, I was released kidney stone free and with a replenished red blood cell count. I felt good and went about my business. No further follow-up for my anemia was ordered.
For 25 years I had recurring diagnoses of severe anemia. In fact, I NEVER had a normal red blood cell count after high school. The conclusion was always: "You are menstruating, so of course you lose a lot of blood. Take supplements. Eat more liver." Then when I became vegetarian, the tone turned more to: "What do you expect will happen if you choose to eliminate meat from your diet." I bought all of it. I'd take supplements for a while, and since my anemia didn't seem to be causing me any specific problems, I'd figure I was better, not stick with any follow-up visits to doctors to just check that, and by each regular check-up (which for me were typically 5 years apart), my iron levels would be low again. At least that's what I thought was happening.
Then in January, I started with a new primary care physician. That's where part 2 of the story will begin.
On the Keith Olberman show, he always used to end his show with some count: "542 days since the former president declared victory in Iraq. Good night and good luck." I wondered when he would stop counting. And the answer seems to be, he never stops counting somehting, he just changes what he counts.
I wonder how it will be with me and celiac. Will it be until I finally get that this is forever, and what's the point in counting that? Will it be when I come up with something else to count?
I only watch the end of Keith's show so that I can watch the opener to Rachel Maddow anyway. She's not a counter.
When I went running this morning, I thought of all sorts of things to blog about: My 8-month journey to my celiac diagnosis, sobriety, my relationship with chocolate and food in general... For now, I'll just note that today I am craving decadent snacks. Since we don't have any gluten-free decadence in our house, I settled for making rice and eating it with agave nectar and almond milk. Crazy, I know.
So, on my first full day of trying to not eat gluten, which was yesterday, I think I did okay, except I need to replace my generic store-brand oatmeal with oats processed in a wheat-free environment. And my lunchtime macrobiotic sushi from Whole Foods had an ingredient I had never heard of, but I took a chance on it. My partner, who clearly loves me very much, made special GF pasta and red sauce for dinner. She made our kids and herself a separate red sauce with faux ground meat. Theirs looked better than mine, but mine was tasty never-the-less.
I have some real issues with the whole process of diagnosis of this disease. More on that later. Suffice to say for now, I opted to decline the option of a colonoscopy that the GI doc suggested I think as a way to help pay for his kids' private school tuition.