Important Reminders for Celiacs after a Near Disaster

Recently, I was very close to eating a large amount of wheat. As someone with celiac disease, this would make me very, very sick. Fortunately, my go-to habits and strategies kept me safe. This story explains what happened and offers a few reminders for eating away from home.

It’s not uncommon for someone to call me paranoid or to point out that my diligence in avoiding gluten is overly anxious. One common comment includes, “I have a friend/cousin/sister/etc who eats that all the time and she never has problems.” I find out later that these people are generally eating gluten free as a choice, rather than as a necessity.

This is not the case for anyone with celiac disease, an allergy, or a severe intolerance. I’ve written more on this in the past (see 5 Things Non-celiacs Should Know About Celiac Disease), but today I want to share a near miss for me and a huge accident for someone else after I received lots of thoughtful reassurance by food staff.

Two weeks ago, I led an outdoor education trip for students. One of these students was gluten and dairy free as a way of managing his ADHD. Fortunately, he is not very sensitive to gluten but finds it’s best for his condition to avoid it whenever possible. I am a very sensitive celiac, and even small amounts of cross-contamination make me sick. When I’m leading students or have another leadership/coordination role, I am more careful with gluten because if I get sick, it affects the experience of the entire group.

I spoke to the kitchen ahead of time and was reassured that the kitchen staff understood celiac disease, cross contamination, and are trained to provide celiac-safe food. They also added that wheat was used in the kitchen and offered to accommodate me if I was very sensitive and would like to bring my own food. I appreciated the offer and considered trying their food. An experiment closer to home seemed a good way to test out eating in a busy shared facility since in two months, I will be halfway around the world in South Africa and may need to do the same. In the end, I decided to bring my own food just in case, but to eat their food if I felt it was safe. At this point, packing my own healthy food options for multi-day trips is so compact and systemized that it takes me very little additional time! (see Packable Kitchen, The Ultimate Portable Meal)

Here’s what I found:

• During breakfast, the open-view kitchen allowed me to see the flour covering many surfaces and very near the skillet with scrambled eggs. I decided to eat my own breakfasts.
• For lunch, we ate sandwiches outdoors and gluten free bread was provided. There was lots of cross contamination with students dipping knives in the spreads and touching them to their wheat-filled bread. I took note that if I ate first, I could avoid cross-contamination next time. The bread was, however, in an unmarked plastic bag so there was no way to double check its GF status (or what was in the bag previously).
• All the snacks were wheat-based: pretzels and goldfish crackers.
• Dinner was gluten free pasta. It looked very similar to the regular pasta, and to be truthful, my own packable meal looked tastier and more nutritious, so I ate my own here 😉

The following day included similar meals and I decided to continue eating my own food - the symptoms of getting sick would not be worth trying this food.

And now the near miss:

On the way home, the kitchen staff was kind enough to pack lunch for us. They labeled a  bag “gluten-free”, and it contained Rudi’s bagels (in the original bag). Score! I could get a GF bagel. I had already packed a sandwich so I ate my own, but I took home the extra bagels since they would be otherwise thrown away. I figured my husband could eat the one on top (since there may be some cross contamination) and I’d eat the others. The next morning at home, my husband went to eat a bagel and I asked to double check the ingredients out of habit. Here are the ingredients:

I was horrified! It turns out Rudi’s also has an organic bakery, and these were not gluten free at all. I am so grateful I decided to bring and eat my own food, the GF student was not very sensitive, and on a whim I checked the ingredients of a “sure thing”. When I mentioned this experience to a coworker, she told me that this happened to a student on a previous trip to the same location and they got really sick, but she didn’t want to worry me so she kept it to herself.

So as a few reminders for all of us:

• Always check the ingredients yourself
• Always have food on hand
• Trust yourself over others

Have you had any near misses lately? Write in the comments below!

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