This is an open letter to the Canadian Celiac Association (CCA), in response to its harmful statement about Nima Sensor. This article is my opinion and my opinion alone. Please read my disclosures.
Over the last few years, our collective faith in government, healthcare, and educational institutions has been tested. And now you can add the Canadian Celiac Association (CCA) to the list or organizations testing our faith.
Several members of the gluten-free community reminded me about an outdated statement the Canadian Celiac Association issued on the Nima Sensor in 2018. The statement continues to live on the Canadian Celiac Association website and it continues to harm a small business and our community at large. When people send me hate mail about the Nima Sensor, they continue to cite this statement.
I became aware that several people have recently asked the CCA to revise the statement – or better, take it down – but the organization continues to stand by the statement.
In the statement, the Canadian Celiac Association singles out the Nima Sensor, one of the very few products it has an “official statement” on, saying it “does not recommend” the Nima Sensor.
The Nima Sensor is a portable gluten-detecting device that empowers you to test your food for hidden gluten in 2-3 minutes, no lab needed. (Learn more about Nima in this article, 13 Things to Know About the Nima Sensor.)
A member of the community wrote the Canadian Celiac Association recently, explaining her “disappointment and frustration” with the CCA’s stance against Nima and genuinely asking why the organization has taken an anti-Nima stance.
The Canadian Celiac Association responded with this glib response, “Our statement on Nima is offering some insight into the complexity of food preparation. We don’t tell people not to purchase the Nima Sensor but offer insight into its limitations.”
In other words, the Canadian Celiac Association thinks the gluten-free community is incapable of following the manufacturer instructions for proper use. It does not believe regular people (you and me) can be trusted to test their own products for hidden gluten because testing is a “complex” process, and for these reasons, the Canadian Celiac Association does not recommend use of this device.
This response reminds me of the struggle for women to bring the simple at-home pregnancy test to market. The medical establishment and authorities fought it tooth and nail, mostly because they didn’t believe “hysterical” women could be “trusted” to do their own at-home pregnancy tests and many doctors felt threatened that their services would no longer be needed or diminished.
In the New York Times article, Could Women be Trusted with their Own Pregnancy Tests? the author writes, “Ms. Crane’s [inventor of the at-home pregnancy test] story offers a lesson about the social and political forces that can keep even trusted and easy-to-use medical tools out of the hands of patients…”
Due to the Canadian Celiac Association’s poorly worded statement on Nima, and its failure to update it over the years, there have been many consequences to the gluten-free community.
First, some people have become militant in their hate for the Nima Sensor, making those of us who use and rely on it feel bad for doing so. I’ve been the recipient of some of their ire. I guess you could say the Canadian Celiac Association is an early contributor to cancel culture, conjuring up the kind of groupthink that plagues our society today.
Second, the statement is inaccurate as it says there isn’t any “published independent or third party scientific data that defines the accuracy of this device.” Maybe they haven’t seen this peer-reviewed study published in the Food Chemistry Journal that says Nima reported gluten found at 20 ppm and above at 96.9% accuracy.
And just maybe the Canadian Celiac Association hasn’t taken a moment to talk to even one of the thousands of us who use Nima to protect ourselves and our health every single day. I’ve never met a person who uses the Nima Sensor as a substitute for having a conversation with their server or reading food labels. If the Canadian Celiac Association talked to the Nima Sensor community, they would know that and have faith in our ability to understand “complex” testing methods.
Third, the Canadian Celiac Association’s statement attempts to put a small business, the very small business designed to protect and serve our community, out of business. To me, that is an injustice.
Finally, people have been fearful to use the Nima Sensor because of the CCA’s recommendation – or worse, fear of being attacked (like I have been). This has prevented thousands of people from benefiting from Nima Sensor’s assistance over the years. Thousands of people may have avoided becoming glutened as a result.
I Have No Dog in this Fight
Before I continue with this open letter to the Canadian Celiac Association, I want to assure you I have no dog in this fight.
I’m simply a user of the Nima Sensor. I pay for my own test capsules. I no longer have a relationship with the company, which is under new management led by David Dellafave, whom I interviewed for this article. Dellafave did not give me warm and fuzzy feelings when we spoke, but I’m grateful for his commitment to the company and its vision nonetheless.
Please note, however, that I once had a professional relationship with the original owner and co-founder, Shireen Yates, who invented this device to help – not hurt – our community. Shireen is gluten intolerant herself and knows, first hand, the struggles we face to stay safe when dining out and trusting food companies.
In fact, when I interviewed Yates about how the Gluten-Free Watchdog skewed the data, she told me it took her by surprise and that she was “proud” of the data. She thoughtfully refutes the Gluten-Free Watchdog’s assessment of the device she has spent years creating.
On top of it all, I don’t make any money selling test results to the gluten-free community. You should know, however, that there are people in our community who do make money selling and have built a business around testing products for hidden gluten. Conflict of interest? I’m not one to say nor judge. All I know is I can test the exact bag of chips or exact restaurant dish I’m about to eat with my Nima Sensor. That’s way more powerful to me.
I have stayed silent for too long because, as I mentioned prior, the haters have come for me at times. Just as they have tried to cancel the Nima Sensor under false pretenses, they will likely set their sights on canceling me for speaking out and defending a product that has personally helped me.
The truth is, I feel compelled to be brave and stand up to the bullies because I know the Nima Sensor is an accurate device that has been third-party tested and validated.
When the device is used as instructed by the manufacturer, it will absolutely help a person adhere to the gluten-free diet, and therefore keep them safe and healthy. And if someone has been gluten-free long enough, they know the devastating toll an accidental glutening episode can cause.
Of course, the device has some limitations, and the company is more than transparent about those limitations.
Nima is not perfect, but no one should let perfect be the enemy of the good.
Nima is completely transparent in its limitations. Let’s discuss each of these limitations in detail so you can be an informed user.
Fermented Foods: First, Nima cannot detect gluten in fermented foods. This means you must read labels before testing anything. If you see something that may be fermented, like soy sauce, barley malt, beer, or vinegar, you should note that Nima may not detect gluten in those ingredients.
This means that one of the limitations of the device is that some people will forget that Nima cannot detect gluten in fermented foods. When this device, or any device, isn’t used properly or as intended, there is always a risk. More education and perhaps a warning label sticker on the Nima could help further this education.
Only Tests a Small Portion of Your Food: Second, Nima only tests a small portion of your food, not the entire dish. Of course, full ELISA lab testing of the entire dish would be most ideal, but it’s not practical.
For example, how can I send the hamburger placed before me at a restaurant to a lab to tell me if it’s safe to eat or not? The answer is it’s not possible; rather, the Nima Sensor empowers the gluten-free community to test the exact food placed before them. Is it perfect? No. Is it a helpful tool to have in the overall gluten-free toolkit? Yes!
Too Accurate: Another limitation is that Nima may report “gluten found” when it finds gluten levels to be between 2-20 ppm of gluten. The reason critics are upset about this is that the FDA says foods with less than 20 ppm of gluten are considered “gluten free.” (Yes, the FDA is saying that foods that contain gluten can still be labeled “gluten free.”)
I get it. Even this study said some users “felt the device to be too sensitive for their personal needs,” and noted that such limitations can be jarring for “foods with gluten levels close to the 20 ppm cutoff.”
Yet, Nima is transparent about the fact that it may report “gluten found” when it finds any gluten and has always openly acknowledged the ethical dilemma the founders faced when designing the device. Should Nima tell users when it finds any gluten, or only disclose it found gluten when the amount is over 20 ppm, the legal limit?
This was a tough call for the Nima founders, but I can’t help but wonder if they chose to only report gluten levels over 20 ppm if the critics would flip and be upset about that instead? Probably.
I totally understand how a product that is legally labeled “gluten free” because it contains 10 or 19 ppm could lead to wrongfully accusing a company of not really being gluten free. It’s confusing. And I wish we could know exactly how much (ppm) of gluten Nima found. Hopefully that technology is coming. (The ALLIS Sensor is said to provide exactly how many ppms of gluten it finds; however, the device has been marred with delays and is not currently available.)
Creates Food Fear: Some critics say the accuracy of Nima detecting gluten at levels less than 20 ppm leads to “food fear” and “hypervigilance” in the gluten-free community. I get it and there is a huge emotional burden to the gluten-free diet. I experience that burden every day trying to keep myself healthy and safe while going about my normal business.
I also agree that there is a lot of food fear in our community, and to some, it can be paralyzing. But let me tell you, this food fear is not because of the Nima Sensor. In fact, people who are scared to eat out actually can eat out now with a Nima Sensor in hand. How’s that for getting out of food fear prison?
(Please note one dietician said she doesn’t recommend Nima, mainly because it promotes “hyper-vigilance.” However, she’s never used a Nima nor has she taken the time to actually speak with satisfied, long-term Nima Sensor users like myself. She only interviewed people who confirmed her bias.)
The truth is, we know there is technology that can easily detect gluten under 20 ppm. We know the FDA did not have access to this technology at the time they set the 20 ppm limit. We know organizations, like the GFCO, won’t “certify” a product as gluten free unless it contains 10 ppm of gluten or less, not 20 ppm.
This is why I think critics should use their puffery for good. They should champion a no gluten policy rather than protect restaurants and manufacturers that say they’re “gluten free” even though they still have gluten in their products.
They should ask the FDA for more transparent labeling, perhaps requiring companies to disclose how many ppm of gluten is in each product. Gluten exposure can add up and make people sick. If you knew a product had 5 ppm of gluten in it, would you eat it? How about 18 ppm?
The truth is, food anxiety is rampant in our community because we eat products labeled “gluten free” that actually contain gluten and make us literally sick to our stomachs.
The truth is we want to eat out and feel normal, yet time and time again the food placed before us at a restaurant, no matter how serious we take our diet and explain our “allergy” to the waitstaff, is the wrong food or contains gluten. (True story, my friend Traci was hospitalized for days after a restaurant gave her a regular pizza, not the gluten-free pizza.)
The truth is that the world is a scary place, and we must all learn to navigate it as best as we can. When our words fail us after explaining our disorder to well-meaning restaurant staff, Nima is all we have at our fingertips to protect us.
The truth is real food fear is perpetuated by many people in our community who tell you to not eat out or only buy certified gluten free food. It’s the same fear perpetuated by people who tell us not to eat food prepared in a convection oven because convection circulates gluten. If someone is making you afraid to eat food prepared in any oven but your own, well, that’s the perpetuation of real food fear, my friends.
Pricey: The Nima Sensor is pricey, but the real costs begin to add up when you purchase single-use test capsules for nearly $40 for six capsules. I wish this costs wasn’t so high.
I’m fortunate that I’m able to purchase these test capsules as a business expense. I know not everyone has access to a pricey Nima Sensor, so I offer to test products for the community (most items I test are at the request of my community), and I share my results in my newsletter and on Instagram and Tiktok.
The truth is, for many people with celiac disease, it’s also a privilege to be able to afford a health coach or dietician. That said, I HIGHLY recommend people with celiac disease get nutrition help and trust me, it’s worth EVERY penny. And I would never knock someone for making a living, but again, it’s a privilege to be able to afford the help we need regardless where that help comes from.
On top of that, don’t forget it also costs extra money to follow a gluten-free diet. Gluten-free products cost three-times more in many cases, and restaurants almost always upcharge for smaller, gluten-free menu items.
Instead of telling me and other Nima Sensor users that we’re “privileged” to afford a Nima Sensor, we should all work together to change the system so being vigilant about our diet and health isn’t so cost prohibitive.
For starters, insurance companies should cover the cost of Nima Sensor and test capsules as a life-saving device that protects our community. Also, people with gluten disorders should get tax benefits to offset the high cost of gluten-free food. Why not? In many countries, like Italy, people with celiac disease get tax credits to counterbalance the higher price of food. And of course, insurance should pay for nutrition help when someone is diagnosed with a gluten disorder. Period.
Again, let’s change the system rather than make people feel bad for spending extra money to protect themselves.
Why the CCA’s Stance on Nima Sensor is Damaging
The Nima Sensor was designed to protect the gluten-free community, and it does a good job at doing that.
When I read a confusing food label, or I swear that a gluten-free bun looks too good to be true, I pull out my Nima Sensor and am quickly able to identify if the exact product I’m about to eat contains gluten or not.
Yet, the Canadian Celiac Association’s statement continues to harm the gluten-free community year after year as it works to discredit our efforts to be taken seriously.
For example, let’s say you’re eating at The Cheesecake Factory and you order a gluten-free pasta dish after informing your server you have celiac disease and are serious about eating gluten free. The server assures you he understands gluten free and will take the necessary precautions with your dish.
Then, when your dish comes to the table, you think you see a strand of angel hair pasta in your gluten-free fusilli pasta (happened to me, read about it HERE and see the image below for the exact dish in question – spot that angel hair pasta?). You’re now questioning if the dish is really gluten free despite the fact that your server insists it is.
You then test your food with your Nima Sensor to gather a second proof point that this dish is not gluten free.
Then your server retorts that he read a statement on the Canadian Celiac Association website that said the Nima Sensor isn’t a reliable device. Boom!, everything you did to prove this dish isn’t safe for you has been invalidated. “Thanks for the help, Canadian Celiac Association,” you sarcastically say under your breath.
That’s right, suddenly the very organization that was designed to advocate for you suddenly is the one responsible for invalidating and discrediting your concerns.
You either eat the dish (and sit on the toilet the rest of the night), or leave without food in your belly and an empty wallet.
What the Canadian Celiac Association Should Do
Not all hope is lost and the Canadian Celiac Association can make things right.
First and foremost, the Canadian Celiac Association needs to take down the statement or at least revise it for all the reasons outlined in this open letter.
In my opinion, if the Canadian Celiac Association is truly dedicated to keeping our community safe, it should align itself with the Nima Sensor. The Nima Sensor was designed to protect the gluten-free community. I think the Canadian Celiac Association is, too. Why not work together?
Also, instead of saying, “[The Canadian Celiac Association is] not aware of any published independent or third party scientific data that defines the accuracy of this device” (which is untrue) and discrediting a device it knows little about, spend some money to fund third-party independent testing. Use that research to improve the device, not bash it. The Nima Sensor is the best device our community has to protect itself when a full-on ELISA testing lab isn’t an option or immediately available in our pocket.
If the Canadian Celiac Association thinks gluten-free consumers aren’t smart enough to use the device properly, instead of canceling it, help educate the gluten-free community on how to use it correctly and better understand its limitations.
Teach the community how the Nima Sensor can be used in conjunction with communicating your needs, researching restaurants and products, and overall taking your gluten-free diet seriously. It’s not an either or situation as both good communication and the Nima Sensor can work in unison to help keep our community safe.
I implore the Canadian Celiac Association to work with the Nima Sensor to hold restaurants and manufacturers accountable to our community. Stand by the gluten-free community when the results of a Nima Sensor are questioned – or worse, discredited – by a restaurant.
Allow Nima Sensor users to have conversation directly with restaurant staff to advocate for our community and pave the way for safer dining. Don’t encourage the gluten-free community to place their sole trust in a restaurant to keep them safe rather than a validated device designed to keep them safe.
I guess it comes down to who you trust more: The restaurant staff who knows little about gluten-free food? Or a validated gluten-detecting device designed with the gluten-free community’s best interests at heart?
What Can the Gluten-Free Community Do?
Please send your concerns about the Canadian Celiac Association’s outdated Nima Sensor stance to Melissa Secord, the National Executive Director of the Canadian Celiac Association at Melissa.email@example.com. Let her know this has got to change.
Please don’t give into group-think and cancel culture. Think critically for yourself. When you read negative things about the Nima Sensor, rise above the mob mentality and do your own due diligence. Read the data and come to your own conclusions.
If you choose to use the Nima Sensor to protect yourself, you will be in good company. I’ve been using it since its founding, and there are thousands of satisfied Nima users despite the fact that we’ve had to defend ourselves from the haters over the years.
One independent study found that 90 percent of the users said “Nima was easy to understand, helped them follow a gluten-free diet, gave peace-of-mind and was useful” and the vast majority of participants said they would “recommend the device to others with celiac disease and planned to continue using it.”
If you still choose to be anti-Nima, that’s fine too. It’s not for everyone. Just stop judging those who choose to use it. Stay in your lane. As a good friend once told me, “What you think of me is none of my business.” Touché.
Sharon Naismith says
Thanks so much for alerting us to this situation. I was unaware that this was an issue.