July 19, 2015

Gluten Rumspringa a.k.a. I'm doing the Gluten Challenge

This selfie to my bestie about questionable
 lipstick doubles as the perfect, "I dunno
about this news either" pic.
This post is going to come as a total shock, so brace yourselves. I never thought I'd say this, but I'm on the gluten. I'm eating gluten like it's my job, because right now it actually is. I don't post much on here anymore (sorry?), but for the past year or so, I haven't been feelin' super duper. I feel like am being slightly glutened on a daily basis despite following a strict gluten free diet. Sure, there'd be chunks of time when I'd feel ok and get in my swing of normalcy, only to break down again and be a big blob of yuck. All the fun intestinal poop stuff and exhausted. So tired, I'd come home from work at 6pm and go to bed. I'd be tossing and turning throughout the night and then "wake up" exhausted in the morning. Achy, breaky, and 100% falling apart. Bummer, right?

I talked to my GFF about it and oddly enough she was going through the exact same thing! She was seeing a doctor at Rush who specializes in celiac disease. I figured that I should maybe see him too. I made an appointment, which I had to wait a few months for, and hoped he could help me sort out whatever's going on in my guts.

When I had my first appointment with my new gastroenterologist and his intern, they were very thorough. I told them what was going on, that I've been gluten free for a little over 15 years and follow a strict gluten free diet. They thought it could possibly be non-responsive celiac disease, but without the results of my original diagnosis they couldn't know for sure. They requested my medical records from the '90s, when I was going through all of my initial testing for my gut stuff, and told me they'd be in touch.

A few weeks ago my doctor called to tell me that he received all my test results; including one dating back to 1993 when I was hospitalized for a totalllllly different issue that was basically an episode of Mystery Diagnosis and every test in the world was performed...including an endoscopy. Turned out scopes I had in '93, '97, and November '99 were normal. My villi were not damaged. My blood test that diagnosed me in January 2000 was, according to him, "soft".  I never knew the numbers, I was told the test came back positive for celiac and to follow a gluten free diet...so I did. I was so sick I would have done whatever they told me to do. 

After going over those old records, he said that he does not have a diagnosis for me. He strongly suggested I be re-tested for celiac to rule it out before we move forward. I immediately got that knot in my stomach and was almost crying to him that I didn't think I could do that. He prescribed a gluten diet for six weeks (four if I turned out to be dying in pain) and would have his nurse call to schedule my scopes. I sat on this for a few days. I sent out emails to a few close friends with a "omg, what do I do?" panic message. I called my mom. I had that knot in my stomach for days and got all panicky when thinking about it. Then the nurse called that at the end of the week to schedule my tests. She was going over everything and asked if I was eating gluten. I told her "not exactly...", to which she replied, "oh honey! You gotta be eating gluten!" I told her I was scared and she talked me down, telling me I didn't need to eat a lot of gluten, but I had to be eating it every day. "Fine," I thought, "I can do this."

I went to Target after work and bought a box of Golden Grahams. They were my favorite cereal when I was a kid, and I figured I'd start with that. I had a bowl of that delicious nostalgia and prepared myself for misery. Nothing happened. The following day, I visited my parents and we ordered pizza from one of my favorite childhood pizza places, chock full of gluten. Again, nothing. For the first couple of days I was eating gluten only at night since I feared getting sick at work. (You're welcome, co-workers!) I slowly waded further into the gluten pool, eating a croissant for lunch and a couple cookies throughout the day. I felt fine. That Sunday, I really lived it up. Eating gluten for every meal. I was fine. WHAT. THE. HECK?! Have the past 15 years been a lie?!

In the three and a half weeks that I've been gluten rumspringing (my genius boss came up with the glorious term), I've been waiting for the bottom to drop out. To be doubled over in pain, crying on the toilet in the middle of the night. No such thing has happened. I've had pizza, bagels, croissants, cookies, cake, burgers, fried chicken, and pasta. Not much going on in the gut department. (Minus the other night when I drank a bottle of wine and had one slice of pizza....that was a mistake.) If anything I no longer have the issues I originally went to the doctor with. Although the past couple of days I've been feeling like I'm having trouble swallowing. Acid reflux, maybe? There is no burning sensation, just feels like a post-nasal drip that won't go away. I've also been having a little anxiety. A bit of a nervous feeling like I'm about to go on a job interview 24/7. I've never had a good night of sleep in my life, so I'm still not sleeping great.  A few nights, I've felt bloated at the end of the day. I'm already chunky, but I feel HUGE at the end of the day. When I wake up, I feel deflated, which I'm sure is attributed to gluten.

Olive Garden Tour of Italy - couldn't finish it, but not missing much, celiacs.

Ann Sather's Cinnamon Rolls are amaze, but Julia's were still by far my fav.

Honey Butter Fried Chicken. You put the butter on the bird. Nuff said.

Granted, I'm not eating the healthiest gluten by all means. If I have to eat gluten, I want to catch up on all I missed over the years. I'm still trying to be semi-healthy, but I did do the Tour of Italy at Olive Garden with zero regrets. (Well, maybe one,  should have just had a bowl of breadsticks.) I had a cinnamon roll from Ann Sather's. I got to put my honey butter on the fried chicken today at Honey Butter Fried Chicken. I ate a slice of deep dish Pequod's for the first time ever last week. I had a real gluteny donut from Do-Rite (and wowowowowow! I thought the gluten free was the best thing ever. Sorry friends, but their regular donuts are like eating heaven.) It's funny grocery shopping or eating out, because now I have too many options and I'm not quite sure of what I'm doing. (I had no idea how Potbelly's sandwiches worked. Still like the salads better though.) I'm still eating my veggies, but I will have to do a nice cleanse after my gluten challenge. I have a feeling I'll be like Homer Simpson in that muumuu if I continued eating like this after the challenge.

I have my tests in the middle of August. I'll be sure to write a follow up post when I get the results. Part of me wants to ask for your well wishes and good vibes, but I honestly don't know how I feel. Eating a Do-Rite donut at work that one day, I prayed I never have to go back so I could have that amazing donut again. But I feel like a total traitor, and I know gluten will probably catch up with me soon. Ultimately I'm just hoping whatever is wrong with me is not serious. We'll see!