The Importance of Being Earnest (with Gluten Warnings)

*OK, you can stop rolling your eyes at my not-so-clever title*

Believe it or not, I recently managed to gluten myself TWICE within 72 hours, and it was all due 100% to my own negligence and the fact that I was in denial that cross-contamination disclosures weren’t a big deal. I was totally wrong, and it’s completely my fault. I ended up missing a crucial 20-mile training run and spent my entire Sunday afternoon on the couch, shotgunning episodes of Downton Abbey and laying about miserably.

Having been diagnosed with celiac disease in spring of 2011, you would THINK that by now I would know better. You would think by now I would be well past rookie mistakes. You would think that after my disastrous marathon in Michigan I would be on my toes and 100% alert and aware.

Nope. I’m an idiot. And it’s completely my own fault.

Before getting into the specifics, I wish to preface this by saying how appreciative I am of stores and food manufacturers for being very specific with their allergen disclosures. I absolutely love places like Trader Joe’s, but know quite a bit of their goods have cross contamination potential (and they are very specific with disclosure). I will never stop shopping there (they carry my very favorite natural peanut butter!), but I know that I have to step up my guard or pay serious consequences. Both glutenings were due to my own negligence, and no finger-pointing or blame is aimed at anyone but myself.

Glutening Number One took place during a Saturday night dinner that we hosted for some good friends; I had gotten some homemade veggie burgers from the Fresh Market section of Wegman’s. Perusing the ingredients I saw that everything was safe, but then a warning beneath that they may contain traces a laundry list of possible allergens due to being prepared in a shared area. I thought about this warning and realized the same exact warning was on their prepared sushi, so shrugged it off with a flippant air of dismissal. I ate sushi from Weman’s dozens of times with no issues as long as I knew what to look for, so I assumed the warning was a very small threat with zero consequences.

I was quite wrong, and within an hour or so I spent the rest of my evening in pain; I was reminded of the old paper mache volcano I made in grade school with the baking soda lava flow…it felt that awful. I was feeling quite irritable and frustrated that I ruined a Saturday night by not taking the warning seriously. My 20-mile run that was scheduled for the next morning was completely out of the question, and it really threw a wrench into my training.

Glutening Number Two occurred that Monday afternoon when I purchased some hummus from Trader Joe’s. I had done this dozens of times in the past, always being sure to examine labels ahead of time before checking out. Until that day. I bought a hummus that was a four-flavor variety tub, and sampled it when I got home with some tortilla chips. Within fifteen minutes my stomach was outraged and quite mutinous; I tried to lay down for a short while but the severe pain kept me tossing and turning restlessly. I was reminded of the years I spent as a child going through this exact same kind of agony, and started to trace my steps to the source of the discomfort. Something clicked resolutely in my brain and I went back to check the label on the hummus (that I had previously disregarded) and saw that it was processed in a shared facility with wheat products. I was furious at myself for being so careless. Fortunately I was able to take some activated charcoal tablets with a lot of water, and within an hour or so the symptoms had abated to a mere whisper. But the effects lasted throughout the entire week and even into my weekend that was spent at the family shorehouse.

Two times I glutened myself accidentally due to my own  carelessness. Two times I easily could have avoided it, the first time because I decided to disregard it, the second time because I forget to check and assumed the product was safe like the others I had purchased in the past.

A while back I wrote an entry about never letting my guard down, and I completely and totally failed to follow my own advice. So what does this mean for me in the future? Has a lesson been learned? I certainly think so, but I think it’s an important message to reiterate ad-nauseum (no pun intended!).

If you have celiac disease: never, ever, EVER consume a product that may have shared equipment or was processed or stored in a facility that also processes products with wheat or gluten. The merest hint of cross contamination is enough to send my health into a tailspin. Read labels with a microscope. Check and double-check. Ask questions. Don’t be careless. How many times will I have to accidentally gluten myself before this lesson sinks in and is lodged permanently in the recesses of my brain?

I think it set in earlier this week. I had a strong craving …I really wanted some avocado rolls at lunchtime. I went to three different stores and all three times there was a warning about wheat (and sometimes barley was actually IN the prepared rice, much like how it is prepped in Japan). Was the warning merely about the soy sauce packet that came with the rolls? Is that what it meant by “CONTAINS WHEAT”? I wasn’t about to find out. Irritable and disappointed, I simply went without that day.

To be blunt, having celiac sucks. Going without when you have a major craving also sucks. Being hungry when there are no other options ALSO really sucks. But the consequences are not worth a moment of pleasure in the end. Having your immediate cravings mollified isn’t worth 7-10 days’ worth of side effects, and it also can affect years’ worth of internal healing.

When I hear about celiacs who cheat because they “can’t help it”, it devastates me. They know it hurts, and the pain is worth the pleasure. They are definitely gluttons for punishment, but have no idea how much more damage could be going on internally besides the immediate side effects (for me, seriously annoying things like canker sores, blurred vision, dizziness and extreme fatigue on top of loads of GI distress). It is not worth it, nothing is worth your health.

I will not allow myself to be glutened again by my own hand. I can only hope my message can be passed on to you.

For Further Information on finding gluten in labeling:
What Terms Mean ‘Gluten’ on Food Labels?





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!