As a Celiac, I Can’t Afford to Let My Guard Down

When it comes to dietary lifestyle, I think it’s very easy to become a little too comfortable, and ultimately careless, once you are used to living this way for a while. I’ve officially gotten into a groove; it’s definitely not nearly as hard to live a gluten-free plant-based lifestyle as most people assume, and I’m doing great! But sometimes I think when it comes to the gluten-free part, I can get a little haphazard. Lately it’s been happening to me, and I realize that I need to remember to stay focused, not get sloppy, and diligent about research and asking questions. LOTS of questions. My health absolutely depends on it. I can’t afford to slip up.

Lately I have had incidents occur which, if I wasn’t diligent (and as Chris says, using my Spidey senses), would have ended in disaster. Other times, I assume my work is done and I have suffered consequences because I didn’t do my homework. Having celiac disease means being very aware of everything you consume, and never letting your guard down.

One instance was when I was at a PF Chang’s, a place I frequented often and didn’t have too many issues with in years past. I ordered one of my favorite dishes, a Thai Basil pasta that they would veganize for me. The server brought it to the table and I immediately noticed that the food wasn’t on the correct plate. Those of you who order from the gluten-free menu at Chang’s know that the GF dishes come on round plates with the Chang’s logo on the edges. This order definitely came on a regular square dish.

I asked the server if this was gluten-free, and she at first said yes.

I repeated the question and asked if she was absolutely certain, because it definitely didn’t come on the correct plate. She hesitated, admitted her doubt, and said she would take it back and check for me. I was very calm and understanding, but inside my heart was racing just a little. I am not a confrontational person at all, but I NEED to make sure that the order was 100% correct and had to be very firm and insistent that they know.

In the end, it was NOT gluten-free and they totally mixed up the order. While I never expected a comp, the food WAS comped, I was provided a legitimately GF meal, and all was well at the end of the day.  But I had to ask more than once, not just take the first answer at her word. I had to dig. I had to insist she be certain. No matter what, when eating outside of your comfort zone (meaning your kitchen) there is ALWAYS a risk of being glutened. I oftentimes joke that eating out is like playing Dietary Russian Roulette.

Another incident in which I was fairly diligent was at a recent family birthday party where a lot of grilling was going on. For the veggies, my mom made some homemade black bean burgers which were not GF (made with panko bread crumbs), and some Portobello mushrooms. They decided to put all the vegetarian items on the grill first. I secretly watched as my dad used the same spatula and grilling surface, and realized I was going to have to step in and gently chide/educate him on cross-contamination. I said that I needed to have my own Portobello on foil and a separate spatula would need to be used, because grilling all the veggies items together, while thoughtful for vegetarians, was still a glutening disaster waiting to happen. He sheepishly admitted he had no idea, but I thought it was a good lesson and they were happy to provide a safe replacement for me, new spatula and all.

Sometimes though, I’m not so diligent. I get lazy. I just assume things are safe. I ask once, take the answer at face value, and get glutened. One of the more recent incidents was at a Chipotle. Now I will flat out admit that I am not sure if I was glutened at Chipotle, but I was very ill the next morning for my race in Ann Arbor. While all signs point to a glutening, Chris has also suffered a stomach bug earlier in the week, so I cannot 100% say it was gluten or if I had picked up remnants of his bug.

Regardless, I made a few mistakes in this case:

  1. I didn’t check online first, and having a smartphone on a 9-hour road trip I had more than enough time to check.
  2. I asked the employee if the chips were gluten-free, to which they replied absolutely, nothing else is put into the fryer but the corn tortilla chips. I simply took their word for it.
  3. I never asked them to change gloves; even though I wasn’t getting anything with a flour tortilla, they handle those tortillas ALL DAY LONG.

The next day after my disastrous race experience, I started thinking back to what could have caused my illness. Chipotle’s website had a section on their gluten-free selection, and what I read made my heart drop a little.

Their statement on the chips was: “However, you should know that it’s possible our corn may have a small amount of gluten from potentially co-mingling with gluten-containing grains in the field.” This was something that was NOT disclosed to me by the employee, and if I had known that was Chipotle’s final answer I would have declined them with gusto.

I also needed to remember that when they make burritos they dip the ladles and spoons into the various ingredient compartments, and then use the same spoons to get it properly distributed onto a flour tortilla. So it’s also quite possible that trace amounts of gluten were in the ingredients.I am also TERRIBLE about asking them to change gloves, which is incredibly important.  It’s enough to make any celiac never want to eat out again! So many of us still hide out in our safety zones for a good reason.

Yes, on a microscopic level, gluten is devastating to a celiac. A single bread crumb is enough to cause serious reaction. Imagine a Gordon Ramsay accent here: Pretty frightening right? Something I need to take more seriously, correct? Lessons have been learned, yes?

An astounding affirmative on all counts.

I don’t want to spend the rest of my life hiding out and not enjoying the world like “normal people”. But it’s definitely hard. When you have celiac, you have to be assertive and ask questions. Check and double-check. Do your research. If something doesn’t seem right, trust your instincts and speak up. I am guilty of being a pretty passive individual, but I am getting better about speaking up  and not remaining silent and submissive. Don’t fear the eye roll. It might happen. I’ve had to get a little snarky when I ask if something is GF: “I’m GF because I have celiac disease and my health depends on it, not because (insert celebrity name here) does it.”

It’s important to remain diligent and not let your guard down. Don’t get sloppy. Don’t allow months and years of healing go down the drain because you assumed that everything was fine. It might not be. I think this is a reminder we can all use once in a while!

On a personal note: It’s been super tough for me to get in any efficient blogging and social media time these days, life has been very, very busy and there has not been a chance for a lot of “me” time, but I will definitely do my best to get back into the groove!


2 thoughts on “As a Celiac, I Can’t Afford to Let My Guard Down

  1. THANK YOU for writing this. The day I read it, I went to a party where my friends and I had planned out my “safe” food, and I was the first one filling my plate. I scooped up some hummus, one that I thought I had eaten before, got the rest of my stuff and started eating. I had checked every single label except the hummus. After taking a small bite of hummus on a carrot, I remembered your wise words and went to check the hummus label. PRODUCED IN A FACILITY WITH WHEAT. Gah! So glad I didn’t eat it all out of a false assumption.


  2. Oh I am so glad, I really want to do all I can to help others in my situation, and I think unfortunately we can NEVER be lazy when it comes to maintaining our health. As much as I would love a life of convenience, quick fixes, etc. it’s just not possible when you have celiac. You have to research, read, ask questions and continue to speculate. It can be VERY frustrating, especially when 99% of the population takes their diet for granted…but as a 1%er we have to be careful and stick to a vert careful approach to food and our health. Best to you!

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