Here's the full story. It's a bit long, but hopefully it will help answer some questions.
For the last year or so, I've noticed increasing issues with digestion in my daily life. But I always figured it was the result of stress and anxiety over grad school combined with my upcoming wedding, and just spent time managing my emotional states rather than considering a physiological problem.
After my wedding was over and the less-stressful summertime had arrived, I started to realize that nothing had changed with my random bouts of GI distress. My aunt was diagnosed with Celiac about five years ago, and I'd been putting off the blood test for fear of it being positive. I never noticed a connection to wheat, but having had food allergies as a child, I dreaded the thought of restricting my diet ever again. Anyway, I finally listened to my mom and went to the doctor.
My guess was Irritable Bowel Syndrome. It seemed like the reasonable answer for why it would get worse with stress and anxiety. I wasn't excited to get the diagnosis, but I thought at least I would have an answer and might be given some suggestions on how to manage it. My doctor agreed it sounded like IBS, but said she needed to rule out other problems like parasites and viruses, as well as Celiac, in order to diagnose me.
Last Tuesday, I came back for my results. I knew right away there was bad news because my doctor's neck was red and splotchy. I braced myself. At that moment, I was ready to hear it was Celiac. And that's what she told me. The blood test looks for four indicators of Celiac, and any one coming up positive is a pretty definitive test. Three indicators were positive for me. And that was it. I called my husband, Avi after I got the results. He made me take the rest of the day off and came home early from work to spend the day with me. When he got home, he immediately ransacked our whole kitchen hunting down the foods we'll have to get rid of. I kept reassuring him that he doesn't need to go gluten-free, but he said he wants to learn recipes for both of us that will work.
So the next step is a gastroenterologist for a consultation followed by an endoscopy. This entails being sedated and having a snake-like camera and set of tools lowered down your esophagus, past your stomach, and into the small intestine, which is where damage occurs in Celiac. They take a biopsy of the tissue there, and look to see if there is visually noticeable damage. They're looking for the villi, which allow us to absorb nutrients in our digestion, to be damaged and possibly missing.
The most insanity-provoking issue is that they encourage you to keep eating your diet exactly as you have been eating it, gluten-filled and all. This is because as soon as you remove gluten from your diet, your body usually starts to heal. Without seeing the damage, the doctor might give me a false negative diagnosis from the endoscopy. I'm actually supposed to keep doing myself damage and provoking the digestive distress. It's pretty difficult to keep eating pizza, pasta, and breakfast cereal knowing it is likely making my insides tear themselves apart. And that's been the toughest part of the blood results so far. Then when I'm feeling sick, which has been pretty much every other day or so, I get really bitter. Both bitter about the diagnosis, and also bitter I can't do anything about it yet.
The advice I keep getting from people with Celiac is to enjoy the gluten-filled foods now, because I'll probably never have them again after I remove gluten from my diet. Apparently once you start taking gluten out, you become increasingly sensitive and aware of the pain it inflicts on your body. So my husband Avi suggested we start on a little adventure in order to say goodbye to my favorite gluten foods, and to help me tolerate the fact I'm eating things that are probably making me sick: Tour de Gluten. I'm making a list of the foods I want to have in their original, gluteny forms before I take it out of my diet. In the meantime, I'm trying not to do much research on what I have to do to take gluten out of my diet until it's time.
I thought this might be fun and useful to document in a blog. My plan is to share my journey, from start of Tour de Gluten all the way through my learning experience as I remove it from my diet. I hope you'll join me and send me your thoughts along the way. Thanks for keeping me company.
Shayna
I had a gluten-free lunch, except for the delicious Reese's Pieces Brownie I bought for a bake sale to raise money for the 3-Day Breast Cancer walk for my classmates. Definitely gluten well spent! And happy to donate to the cause.
