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Thursday, February 19, 2009

My Celiac Journey -- Part IV -- Changes

Just beginning the series? Here’s what you’ve missed.

Part I -- The Diet Contest

Part II -- “You look allergic.”

Part III -- It was Thursday.


Thanks for being understanding about my taking a break last week. I hope you’re enjoying my story. This episode picks up where Part III left off: I had just received my diagnosis after a series of Thursday appointments with my doctor. In the face of the unknown, my husband was comforting and encouraging. I was scared.


From fear to uncertainty.

Once the initial trauma of a confirmed diagnosis passed, I had to face the fact that I really had no idea what to do to deal with my new requirements in life.

Celiac disease (if you don’t know already) is an autoimmune disorder. People with celiac are gluten intolerant. If we ingest anything made with wheat, rye, barley, or one of its derivatives, our bodies react by attacking the gluten. This attack occurs in the digestive system - the small intestine to be exact. For more info, visit the National Institutes of Health’s Celiac Awareness page.

I had to start my very own awareness campaign, reading web pages, books (thanks to my mom-in-law!), recipes, a listserve, blogs… anything and everything I could get my hands on. I had never heard of Celiac, much less met anyone else with it. I had no one to turn to, no one who had been there. I forged my own way through information towards knowledge.

(Need info? Email me! I’ll send you whatever you need.)

From uncertainty to training

I tried to approach this new phase of my life much like I approached being an athlete when in high school. I set aside time every day to work on this problem. I adjusted what I ate immediately, focusing on pure, whole, simple foods. I made it a priority, and strove to become the best -- the best cook, baker, shopper, experimenter, and researcher.

One of the first things I did was purge and sort my pantry. I gave away much of what I could no longer eat. Jim voluntarily gave up much of his gluten-filled foods to help me through the transition. It helped so much to have it almost completely out of the house for a while. For my favorite items, I went to the websites and looked them up. They were sorted into keep and don’t keep piles.

The first time that I went to the grocery store, my shopping time more than doubled: from one hour to about two and a half. I armed myself with lists of acceptable, questionable, and forbidden ingredients and additives. I took my kids with me for moral support. I took my cell phone. I took a cart full of patience.

Produce section: EASY! Woohoo!

Gluten free shelves! Hooray!

Gluten free macandcheese?!? AWESOME! ($4.25 a serving?!? SO WORTH IT.)

Dressings, marinades, and sauces. Oh, crap. From that spot forward, until I got to meats and dairy at the end, I was in super-slow crawl mode.

Many items I could quickly decide yes or no. All of the rest of the items I called the 800 number on the packaging. I asked for verification of gluten or no gluten. The customer service people -- ALL OF THEM -- were super helpful and most of them took my email address and sent full gf product lists to me.

That last paragraph doesn’t really capture the drudgery of this first trip. So many of my absolute favorite items went back on the shelf. So, so many. By the third aisle, I was in tears. Often, this scene was played:

One of the kids would bring me an item.
I would read the label while they stood in front of me, their little eyes fixed on my face, waiting.
Sometimes the wheat or barley was clearly labeled, sometimes I double checked my lists.
Then once of them would ask, “Well?” so hopefully.
My throat would close up, I would shake my head.
“Put it back,” I would whisper. “Put it back.”

Read, sort, repeat

Read, sort, repeat

Read, sort, repeat

From training to toddling

It wasn’t long - a week, maybe two - before I felt more in control. I started cooking with more confidence, ruined fewer dishes, started finding a little variety in my meals.

It WAS long before I was willing to try any sort of processed food, junk food, multiple-ingredient food, or mixed beverages. I was a purist for a long, long time.

It was hard, but it tasted good.

I felt good.

I looked good.

My skin was good.

My hair was shiny.

The shadows under my eyes faded.

The swelling in my gut disappeared.

I cheated once: when Little Ceasar’s pizza opened nearby. It was NOT worth it. I haven’t cheated since. It doesn’t matter how good something tastes: if it’s going to rip apart your digestive system, it’s NOT worth it.

Once I was comfortable with maintaining my new lifestyle, it was time to change again: from toddling to running. It was time to start experimenting. Oh, yes. Time indeed.


Matt said...

Hi Mikki,

I was enjoying a bowl of soup made by Thai Kitchen the other day, and I saw on the package that it was gluten-free.

Here's a link to their site:

I like their soups on cold winter days--easy to make too!

Heidie said...

you know you can buy the Kraft cheese powder from Amazon and use your own gluten free noodls (tinkyada also from amazon) and make your own mac and cheese :-)


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