My week with Celiac… Day #1

No, I have not been diagnosed with Celiac Disease.

Celiac is another autoimmune disease that occurs in about one half of one percent of the general population. However, according to JDRF, about 1 in 10 people with Type 1 Diabetes is eventually diagnosed with Celiac. According to ADA standards just released, as many as 16 percent of Type 1s could be living with Celiac. During this week, I’ll be living and writing about the gluten-fee life from the perspective of someone newly diagnosed with Celiac Disease.

Toward the end of a Wednesday DSMA Twitter chat a few weeks ago, I had a short conversation with Nikki from Celiabetes. Nikki has been living with the triple threat of Type 1 Diabetes, Grave’s Disease, and Celiac Disease since 2010. During our conversation, Nikki made a very good case for how living with Celiac is difficult… from diet to shopping to eating out to going to work every day. And that gave me an idea: Borrowing on the Be T1D for a Day initiative from JDRF back in November, I thought… what if I spent a week living like someone newly diagnosed with Celiac? And then wrote about it?

First a description of Celiac Disease: According to the Mayo Clinic website, “Celiac (SEE-lee-ak) disease is a digestive condition triggered by consumption of the protein gluten, which is primarily found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. (Editor’s Note: Add in oat and malt.) People with celiac disease who eat foods containing gluten experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients.”

So that means no wheat, barley, rye, oat, or malt.

Nikki was gracious enough to answer a bunch of questions I sent her, and I’ll probably share some of her insights this week. She is an absolute encyclopedia of knowledge on this subject. I read through all of the information she gave me, I ordered Gluten Free for Dummies from Amazon, and then I set everything aside. I ignored it for about two weeks. Why? Because, while it would have been easy to do weeks of research, prepare, and then do this week’s worth of diets, it wouldn’t be authentic. Instead, I gave everything the once-over, then put it away until today. Because if you’re newly diagnosed, you don’t get weeks worth of research first. Today I got everything out again and started the same process that probably everyone newly diagnosed with Celiac experiences… what do I eat next?

One of the things Nikki impressed upon me is that not only do I have to avoid any gluten in my diet, I have to avoid any cross-contamination that might occur by cooking in a pan that’s previously been used for something with gluten in it. And when buying pre-packaged products or eating out… wow. In Nikki’s words:

“When it comes to food prep, or eating at someone else’s house, or even going out to eat, the main concern for a person with Celiac Disease is cross-contamination. Gluten is a very sticky binder, and it cannot be removed from certain porous surfaces, like cutting boards, plastic containers, wooden spoons, spatulas, food flippers, pizza stones, and non-stick pans that have scratches. Silverware should be fine as long as it’s been thoroughly washed, same with plates/bowls (as long as they are not plastic). Glassware is fine to wash and use.”

So instead of figuring out what to eat, I first had to make sure I had a skillet, saucepan, and utensils that I could cook with.

DSC00529

Aaaaand… what did I eat today?

Breakfast: Since I couldn’t do much without something to cook in, I just got a glass bowl out and chopped up some green onions (known by many as scallions), some frozen peppers from our garden this summer, and a kumato tomato. I put all of that in my bowl with a couple of eggs and that was my breakfast. Total carb count: 0g

Lunch: I haven’t had the chance to get to the grocery store yet, so I just winged it. I made some rice, added some smoked ham (I lucked out and it was gluten free) and another small tomato, and that was it. Total carb count: 36g

Dinner: That was the best of all today. The Great Spousal Unit wanted to make some Turkey Soup anyway, so she got out the leftovers from the holidays that she was saving. She added a little fresh zucchini, yellow squash, potatoes (potatoes are gluten free), green beans, and a little rice left over from lunch. She let it sit in the crock pot for about six hours, and here’s what the finished product looked like:

DSC00540

Total carb count: 30g (mostly from potatoes)

I guess it was a good start to the week. But there were some real deja vu moments for me today. For the first time since my Diabetes diagnosis, I was confronted with “What do I do next?” and “Is the next thing I eat going to kill me?”. And I have six more days of this left. Imagine if it was you, for real, and you had the rest of your life to live with Celiac. And Type 1 Diabetes. More to come.

Carb counts are estimates only. Check with a registered dietician to find out what a healthy carb count is for you.
 
 
 

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Comments

  • Allison Nimlos  On January 20, 2013 at 11:23 pm

    You should take a look at some Paleo websites. On Paleo, all grains, not just gluten, are off-limits so recipes are completely safe for people with celiac. My husband and I have been doing a Paleo challenge (through http://www.whole9life.com) and so I haven’t had gluten since New Year’s Eve (huge pizzafest!). We haven’t done anything about cooking utensils, but food-wise, we’ve made the switch. Though we haven’t ventured to eat out — I have not had a meal at a restaurant all month!

    Also, you might want to bolus for some of your protein on your very low-carb meals. From my experience and from what my CDE told me, your body will turn some protein into glucose if it doesn’t have any available from a meal. I bolus half of my protein and it works great.

    • StephenS  On January 20, 2013 at 11:49 pm

      Allison, I haven’t heard about bolusing for the protein before. Fascinating stuff… thanks for the feedback!

  • Nikki coar  On January 21, 2013 at 12:00 am

    Love the post, Stephen! I am impressed by your thoroughness! Good luck in your GF eating endeavors! nikki

  • Scott E  On January 21, 2013 at 1:59 pm

    Wow… what a commitment! (And after reading what you’ve eaten, I can’t help but think “if it were me, I’d still be hungry!). To do this just for the purpose of educating yourself — and us — is a truly noble venture. Good fr you!

    Regarding Allison’s comment, I learned about bolusing for protein back in May. I wrote a bit about it on my blog (sorry to self-promote, but thought you might find it helpful) http://wp.me/p2aBl3-dn

    • StephenS  On January 21, 2013 at 4:20 pm

      Thanks Scott… I’ll be checking that out shortly.

      Surprisingly, I’m not hungry… Yet.

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