Halloween. When you live with a food allergy or food sensitivity, what frightens you more than costumes is candy. Does the candy in question contain your allergen? Did manufacturers produce this sweet on a shared line with an allergen? Does this candy contain undeclared gluten, which is found in wheat, barley, malt, and rye? What frightened me this Halloween was an Instagram post regarding NIMA and a 100 Grand bar.
Halloween was unique for me this year. My husband and I drove a 20 foot Uhaul from Michigan to South Dakota, with our car in tow. (Confession – He drove. I “navigated.”) We chose to spend our vacation helping our dearest friends move all their belongings 800+ miles away, due to a new job. No costumes for us. No decorated van passing out safe treats from our Teal Pumpkin Project – inspired stash of goodies. Therefore, I vicariously enjoyed Halloween through social media. From the comfort of the Uhaul (oxymoron?), I perused Instagram.
We were somewhere in the plains of Minnesota, between Rochester and Sioux Falls, when I noticed an Instagram post of a 100 Grand candy bar. What’s a 100 Grand Bar? Imagine a Nestle Crunch with a caramel layer inside. The post showed a 100 Grand being tested with a NIMA. What’s NIMA? It’s a portable electronic device that tests for gluten in food. How does it do this? In simple terms, you put in a pea-sized amount of the food you want to test in a capsule. The capsule contains a solution and you place the capsule in the triangular device, and it uses testing methods to detect the presence of gluten.
So, what caught my eye was that results on the NIMA. The Instagram post showed a NIMA with a smiley face. This in theory means that the product is safe to eat. The person posting only had the small miniature 100 Grand Bar, but not the larger bag from which it came. While we plodded along I-90, I did a Google search for a 100 Grand Bar. I was concerned because all the sites I saw (including Amazon) stated that the bar contained crisped rice, which are made with “rice flour, sugar, BARLEY MALT, and salt.” For those that may not know, barley malt contains gluten. Therefore, the device should not have resulted in a “smiley face.”
I wondered “Did Nestle change their recipe?” My husband, who is completely a saint, agreed to pull off the freeway in Faimont, Minnesota and let me stop at a grocery store to check. (In my defense, he was in desperate need of new shoes, and was currently wearing slippers. Lucky for me there was a shoe store next to the HyVee.) So I wandered into the store, and asked one of the incredibly helpful staff to help me locate one of these 100 Grand bars. Here’s what I found.
Yep, barley malt. So I private messaged the owner of the Instagram account that posted the NIMA result. I shared this information. They updated their comments on their account, their blog post, and ultimately removed the image. (Why remove it? People were solely looking at the image of the “smiley faced NIMA” with the candy in question, and not the warning.) But the question remained. How did this happen? Like any other technology, there can be limitations of use. Below is how NIMA responded as to how this could happen. (Names of other Twitter users blocked out to protect privacy.)
So, there’s our answer. NIMA does not detect barley malt. So in theory, Kellogg’s Rice Krispies will come back with a smiley face. This also means something with hydrolyzed wheat could come back as being “safe.” This is something that definitely doesn’t bring a smile to MY face. So what do we learn from this? Here are 4 things this episode has (or should) teach us.
1. Read labels. Always. Every time.
Here’s where the Instagram account that posted the original picture faltered. That person ONLY had one of the 100 Grand miniature candy bars. He / she did not have the larger bag from whence it came, nor did the mini candy bar have a complete ingredient list. Mini bars, especially those passed out on holidays such has Halloween, do not always have a complete list of ingredients on the wrapper. If you question a food item, and the ingredients are not on the packaging, try to look it up online. ALSO – make sure to read comments on posts as well. Pictures and ratings can be deceptive.
2. Barley & rye are not required to be labeled as allergens.
The person who originally posted the image went by the “allergen warning” on the wrapper. The wrapper did not list barley as a potential allergen. Here’s the thing though. It doesn’t have to. Barley, as well as rye, are not one of the Top 8 allergens that must be declared under the FALCPA guidelines. (FALCPA = Food Allergen Labeling and Consumer Protection Act) The Top 8 include wheat, fish, shellfish, eggs, dairy, peanuts, tree nuts, and soy. The person that originally posted the 100 Grand bar on Instagram relied on the fact that the allergen warning did NOT list wheat, so then it therefore must be free of gluten. A big mistake, yes, but a mistake nonetheless.
3. You are smarter than technology.
NIMA is a tool one can use to help make decisions about what we eat. However, it is nothing more than that. NIMA is not without its limitations. Results can have errors because a sample is too small, too large, or even because it is red. From above we can see that it can declare a food as “safe” when it is not. Cases have also shown that products can result in an “frown” even when a product is actually gluten-free. Technology is great, but it is no replacement for using our brains and common sense.
4. We still need to treat each other with dignity.
So here is where I voice my opinion. NIMA has become a controversial issue in the Celiac Disease community. (Just like Cheerios.) I try not to share my own opinion about the NIMA too often, but instead share facts of how I have seen it used and how it performs. Based on that evidence, I am not a fan of the device. However, that doesn’t mean I will publicly insult those who choose to use it. Some of NIMA’s biggest users are friends of mine. I refuse to throw them to the curb and trash the rest of their advocacy because we disagree on this issue. We need to educate and listen to each other, both on topics which we agree and disagree. Remember, our Celiac attitude impacts the reach of our advocacy.
Do you own a NIMA? What do test with it? What holiday candies do you trust to be gluten-free?