About Me

My photo
I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Thursday, September 6, 2012

Gluten Free + T1 = Road Trip

I am currently in Indiana visiting my dad. I drove here the day before yesterday from Minneapolis. A 9-hour drive is never an easy venture for a type 1 diabetic/celiac, especially when she is driving alone. Nor is it easy for her overly anxious old dog. First, I had to pack all my food for the trip in a cooler, since being a celiac prevents me from stopping at a drive thru or grabbing gas station food along the way. Second, it’s hard to test your blood sugar when you are only stopping for gas once during the entire trip. Luckily, I had my trusty Dexcom CGM on, which helped me to keep track of my blood sugar during the long drive.

Staying as a guest in someone else’s home (including family) is tough when you are celiac and they are not. I have only had celiac disease for 2 years, and so my family never had to deal with it growing up and they are not accustomed to the needs of a celiac. At my home in Minneapolis, my entire house is gluten free, so there is no risk of cross contamination or being glutened in any way. But when you are at someone else’s home, you must be constantly on guard, watching for cross contamination risks with cooking equipment, surfaces, and accidental cross-contamination from other people. I wash the silverware, dishes, and cups every time I take them from a cupboard/drawer, because most cupboards and drawers have crumbs in them (ever seen all the crumbs in your silverware drawer?) or residue from baking supplies like flour. As an example of cross-contamination risks, I packed my toaster oven, since my dad’s toaster is completely off limits. I use my toaster oven for baking, and also for toasting my gluten free bread. In the refrigerator I have my own tub of Earth Balance butter, which I labeled with a sticky note and permanent marker “GF” so others would know not to use it. But my dad got confused and I (luckily) caught him using my butter to spread on his toast. The butter became gluten contaminated from the butter knife he used on his whole wheat toast. It put wheat crumbs in my butter. If I hadn’t seen him doing it, I would never have known, because my butter already had crumbs in it from my GF toast. I would have just gotten ill and probably never discovered the source.

Another source of cross contamination is the fridge. I follow the gluten free “rule” of keeping the GF food on the upper shelves, and the non-GF food on the lower shelves. That way, gluten-y crumbs and drips don’t accidently fall in my food (I also take great precaution to cover all my food tightly).

I brought my own pans to cook in, the toaster oven, a cutting board, Tupperware storage containers, spatulas and flippers, my own spices, salad dressing and about 3 boxes full of gluten free food, plus 2 coolers of cold food items. Not to mention, enough diabetes supplies (insulin, back up syringes, test strips, Omnipods, Dexcom sensors, batteries, chargers, etc.) to last at least double the amount of time I plan on staying, just in case. It is a lot of work. A road trip is no longer a carefree, spontaneous, easy trip. It requires a ton of planning and list-making to ensure you bring everything you need (or you’ll end up buying it again when you get to your destination). That’s not even including the “normal people things” you would pack for a trip, like clothes, and health & beauty stuff, backpack, books, computer, dog bed, dog food, extra pillows, etc. Every inch of my Subaru Outback was FULL. Since I’m on a strict budget, I made sure to pack everything I would need for this trip so I would not need to spend more money when I got here. When I arrived, I had to clean out a cupboard where I could safely store my gluten free items, so I vacuumed it out, then wiped it down with hot soapy water to remove any gluten residue or flour. Then I had to move things around in the fridge and label my food GF. So, the first few hours after my arrival were spent prepping and cleaning the kitchen so my food would not get glutened.

Today, I was walking around the mall and after a lot of mall walking (no buying, just walking!) my blood sugar dropped quickly and I needed something in my tummy. I walked over to the food court, hoping that maybe one of the food places might have a gluten free option for me. I looked around at all the Chinese food places knowing those were all off limits, then I saw Subway (nope), a pizza by the slice place (nope), Annie’s Pretzels (uhhh NO), a burger place (nope) and finally, Chick-Fil-A. The manager there was not sure if their fries were completely gluten free and said she “thinks” the grilled nuggets are gluten free. She referred me to their website for additional information. So I thanked her and walked away. I went to Gloria Jean’s coffee to see if I could get a gluten free coffee drink to temporarily fill me up. I walked to the counter and asked the manager if their coffee drinks were gluten free. She said to me “No, all of our coffee drinks have sugar in them.” I told her that gluten isn’t sugar. I told her that gluten is wheat. She reiterated that the drinks have sugar in them and sugared powder. I gave up at this point. If the manager doesn’t know what gluten even is, there is zero chance that I am going to receive correct information. I gave up, thanked her, and walked away.

When it comes to celiac disease and gluten, I’ve learned one thing: Doubt Means Don’t. And that it’s always better to be safe than sorry. It’s always better to walk away (albeit hungry and frustrated) than to be glutened and pay both the short and long term consequences.

Anyway, overall my family receives an “A” for effort. They are all trying to understand my dietary needs. Although they would love to have me enjoy their cooked meals with them, it’s in my best interest to cook my own food, especially with my food allergies and food preferences, diabetic dietary needs, and of course gluten free needs. I know if I cook that all my ingredients are GF, the cooking equipment isn’t cross contaminated, and I won’t get sick later. I don’t enjoy being so high maintenance but I didn’t choose this life. It just is what it is…

Anyway, I have read a few celiac/gluten free blogs where the families have a dual kitchen, meaning they have both gluten and gluten free food. They usually have two sets of everything like toasters, strainers, etc. After being at my dad's house for just a few days, I really think that is too much work, to have the dual kitchen. You know, like at my house, if I drop food on the counter, I pick it up and eat it because 1). my counters are clean but more importantly 2). my counters have no gluten residue on them. But at my dad's house I have to really think and be careful about every risk. This morning when I was doing dishes, I washed his dishes first, cleaning off his glutened dishes and silverware and pans. Then I put new water in and was about to clean my dishes, when I suddenly wondered 'should I be using a separate dish cloth? Because this one has gluten crumbs stuck all over it." So I grabbed a new dish cloth. With celiac disease, it only takes a weebit of cross contamination to have intestinal damage. It sucks how careful you have to be. So if there are families out there that have a dual kitchen, I'd love to know your secret for making it easier while not increasing risk.

Well, I've talked enough for now. Thanks for listening!


  1. Wow! So many possibilities for cross contamination that I've never thought of before. Cupboards, refrigerators, dish cloths, it's everywhere! I don't have celiac, but it's always interesting to get a peak into the challenges you face. Thanks for sharing!

  2. Hi – Will you please post a link to your important Blog at The Type 1 Diabetes Community at vorts.com? Our members will really appreciate it.
    Members include: Those living with Type 1 Diabetes, their families, friends, experts, caregivers and support groups.
    It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, Photos, and Videos if you like.
    Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
    The Type 1 Diabetes Community: http://www.vorts.com/type_1_diabetes/
    James Kaufman, Editor