Share Your Gluten-Free Horror Story

Do you have a gluten-free horror story? Let’s face it—from ignorance to misinformation to cross-contamination, people who have to avoid gluten also face daily obstacles to stay healthy and eat safely. But you are NOT alone! In fact, for every nightmarish experience you’ve had to endure, there is another person out there who’s gone through something similar. And we want to hear from all of you! Below, read a horror story from Kaitlin Kiely, Brand and Communications Marketing Associate for Bakery On Main, who took every step to ensure a safe meal out for her husband’s birthday, only to be unapologetically glutened and—even worse—humiliated and disrespected.

If you have your own horror story to share for possible inclusion in a future Gluten-Free Living article, email it to [email protected]—be sure to include your first name and state.

Kaitlin’s story

My husband and I had traveled to a local casino for a weekend to celebrate his birthday. Saturday morning we were doing research (as we always do when eating away from home) on where we could go for lunch that had safe gluten-free options to avoid my being contaminated and getting sick. We found a restaurant that seemed to have an esteemed gluten-free menu from all of the reviews we saw online. We went to the restaurant for lunch that day and I realized quickly that the menu was fairly vague. I felt so terrible having to send the waitress back to the kitchen with questions about five or so times but after all the answers that I received, I felt comfortable placing my order. Lunch arrived and as we were eating, my husband and I both noticed that something didn’t seem right with the rice included as a side with my meal (and that was on the menu as a side for most of the gluten-free dishes). It looked like it had various grains besides just rice. With a quick Google image search, we learned that it was a wild barley rice, which was not disclosed on the menu or in any of the numerous conversations I had with the waitress.

I became instantly upset and called the waitress over and asked her to go to the kitchen to double check the rice. When she returned from the kitchen, she did confirm that it was, in fact, a barley rice that had been served with my “gluten-free” meal. She left the table and out came her manager. This is where things took a very ugly turn. I had started to cry because I knew what I was about to deal with, despite trying to be so careful—the sickness, the incredible pain, the brain fog, the exhaustion…the ruined birthday weekend for my husband. Upon seeing how upset I was, the manager made no effort to be apologetic or comforting but instead laughed directly at me and then nonchalantly said she had called an ambulance. An AMBULANCE!!

I immediately told her that my reaction did not call for an ambulance and since it was not necessary, to not bring in the paramedics. I also let her know that after already feeling embarrassed enough at being a spectacle in front of everyone in the restaurant because I was upset and crying, and now having management lurking over our table, the last thing I needed was a table-side visit from paramedics on top of everything else. She walked away for a few minutes and the next thing I see is her allowing the paramedics to walk right into the dining room, directly toward our table with a wheelchair. Infuriated and mortified, I told her to get them out and reminded her how I had, just moments earlier, told her that they were not needed. She could have intercepted them but she made the choice to go against what I had requested and caused a scene, making me even more of a spectacle to an entire restaurant.

She then made no effort to have any other contact with me. Her manager simply approached my husband and I as we were walking toward the exit to offer us a lackluster apology and tell us that our meal was free—as if that was what we cared about in that situation.

It was the worst feeling I have ever been made to feel, being so disrespected and mocked due to a condition I have no control over. This story is a shining example of not only the lack of knowledge about gluten and how it affects certain people but also how this ignorance can lead people to be incredibly insensitive, causing the pain already felt in this type of situation to go far beyond just the physical.

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Cross Contamination of Gluten-Free Grains

A small, preliminary study of cross contamination has raised questions about how much gluten there might really be in some naturally gluten-free grains and flours. The pilot study, published in the June issue of the Journal of the American Dietetic Association, found that seven of 22 samples of gluten-free grains, seeds and flours contained more gluten than allowed in proposed rules for gluten-free labeling in the US.

The seven samples, which included millet, buckwheat, sorghum and soy flours and millet grain, were tested and found to have gluten contamination that ranged from 2,925 to 25 parts per million of gluten. The US Food and Drug Administration has proposed allowing gluten-free food to contain up to 20 ppm of gluten.

Specific amounts (reported in mean ppm) were:

  • Soy flour, one brand 2,925 ppm and another 92 ppm
  • Millet flour, one brand 327 ppm and another 305 ppm
  • Sorghum flour, 234 ppm
  • Buckwheat flour, 65 ppm
  • Millet grain, 25 ppm

These results might have you wondering if many of the gluten-free foods you consider to be safe really are. While the numbers in the study are unnerving, there are a few things you should keep in mind.

First, the study was so small it is impossible to draw any definitive conclusions from it. In fact, Tricia Thompson, a dietitican who is one of the authors of the study, pointed this out in a blog she wrote announcing the findings.

“Sampling was not large enough to make any assessment on the overall percentage of contaminated product,” Thompson wrote. It was also too small to make any inferences on the specific grains, flours and seed likely to be cross contaminated, according to Thompson.

Thompson said in an email that study was designed specially to find out if gluten-free grains that are not labeled gluten free are likely to be cross contaminated. The intention is to use the study results to get the FDA to take a second look at a provision in its gluten-free labeling proposal that says when a naturally gluten-free food has a gluten-free label it must also say all foods of that type are gluten free. For example soy flour labeled gluten free would have to say all soy flour is gluten free. (The study suggests that’s not the case.)

Thompson said she hopes a larger study with statistically significant results will be conducted in the near future, but noted it would require testing of multiple samples of multiple brands. That kind of study would be exceedingly expensive, she said.

But an expanded study pretty cleary now needs to be done. It would be unfortunate if those who follow the gluten-free diet started to question all naturally gluten-free grains on the basis of results from a limited number of companies. And now that the question of just how cross contaminated naturally gluten-free grains really are has been raised, a definitive answer is needed.

A second thing to keep in mind is that since the pilot study looked only at grains not labeled gluten free, its conclusion that a certain percentage of inherently gluten-free grains contain gluten does not apply to sorghum, millet, soy and buckwheat flours that are labeled gluten free. Multi-ingredient gluten-free products, like baking mixes, were also not part of the study.

A number of companies that label their flours, grains and other products gluten free do test to be certain they contain less than 20 ppm of gluten. This information is often available on the labels themselves, on company websites and sometimes by calling the company directly.

Finally, nearly two thirds of the samples in the study did meet the FDA’s proposed standard for gluten-free labeling even though they did not have a gluten-free label. This was true even for three products that had allergen warning statements that said they may contain wheat.

Samples that tested below 20 ppm included basmati rice, long grain brown rice, enriched corn meal, instant polenta, rice flour, hulled buckwheat, amaranth flour, flax seed and amaranth seed. One sample of millet grain met the standard by testing to 14 ppm, but another exceeded it slightly at 25 ppm.

While you have to keep the results of the study in perspective, there is no denying it has uncovered some issues that have to be dealt with both by those who consume gluten-free grains and the FDA, which is supposed to regulate the companies that produce them.

We have known for a long time that all grains are cross contaminated to some extent by other grains because of the way they are grown, transported and milled. Still, the levels of cross contamination reported in the study are news to the gluten-free community. It’s well known that cross contamination of oats prevents them from being considered gluten free unless they are specially grown and processed. But the grains tested in the study have never before been singled out as potentially unsafe because of cross contamination.

While the study might have been intended mainly to provide information to the FDA about one labeling provision, it has farther reaching consequences. Alison St. Sure in her Sure Foods Living blog summed up the dilemma this way: “What are we to do now? Trace every grain, seed and flour, including those used as ingredients in gluten-free products, back to its origin to ensure it has not been contaminated with wheat?

I don’t think the situation is that dire, though I would like to know exactly which soy flour had more than 100 times the amount of gluten considered safe.

For now, it seems common sense and a bit more diligence regarding gluten-free flours in particular are in order. Gluten-free companies could help by making their testing information readily available to consumers, with the label being the best place to put it. Otherwise, stick with products you know and trust. Those who follow the gluten-free diet have managed to eat and maintain good health for many years relying on naturally gluten-free grains.

The study results might convince the FDA to revisit the labeling provision for naturally gluten-free grains and flours so we have more accurate information about them. And if the study of cross contamination is expanded, as it should be, it could provide us with more information that improves our gluten-free lives.