What is The Celiac Project Podcast?

Do you listen to podcasts? People record podcasts on just about everything these days. Mike Frolichstein and Cam Weiner fill the gluten-free void each week with their show, The Celiac Project podcast.

Each Wednesday they discuss topics related to Celiac Disease, including current headlines, dating, and living with Celiac Disease in the workplace. Mike and Cam have a great rapport and it’s great to hear a male voice in the Celiac Disease conversation. They’ve hosted this podcast for 10 years, and have recorded over 400 episodes!

How This Gluten Free Podcast Started

I first met Michael Frolichstein at the GFAF Expo in Chicago many years ago. Michael makes documentary films, and realized after his own Celiac Disease diagnosis that he could use his skills to promote Celiac Disease advocacy.

I watched his documentary, The Celiac Project, while attending a support group meeting in the greater Detroit area. It is a montage of  different people, who discuss living with Celiac Disease. Michael also discussed his nephew’s experience journey in being tested for Celiac Disease. The documentary was the foundation for their weekly podcast.

How Can I Listen to The Celiac Project Podcast?

You can find The Celiac Project podcast on all of your favorite podcast platforms. I personally use Pocket Cast, but it’s also available on Amazon, Spotify, Apple and more. Not a fan of apps? You can also listen to their podcast directly from their website.

Celiac Project Podcast Episodes I’ve Been On

I’ve had the pleasure of being a guest on their podcast three times. I embedded those episodes so you can easily listen to them. The first two podcasts were recorded Q&A sessions we held at the Indianapolis GFFA Fest in September of 2017.

The last embedded podcast session is from August of 2017, where Mike, Cam and I discuss the Catholic church’s stance on communion. For more on this topic, you can read my post about Celiac Disease and Catholic Communion.

The Celiac Project Podcast in Indianapolis – Part 1 (Episode 92)

On this episode we answer questions from the audience, discuss the NIMA sensor, and my affinity for rice cakes.

The Celiac Project Podcast in Indianapolis – Part 2 (Episode 93)

Here we discuss Celiac Disease symptoms, our biggest challenges, and what areas we would still like to see change.

The Celiac Project Podcast – Conversation About Catholic Communion

In my first podcast with them, we discuss the Catholic church’s stance on wheat being required in the communion host.

Other Gluten Free Podcasts You Might Enjoy

• You Had Me At Eat with Erica Dermer and Jules Shepard
• 100% Gluten Free News with Andrea Tucker
• A Gluten Free Podcast with Ben Hampton (Australia)
• A Canadian Celiac (Canada)
• Celiac Straight Talk (Beyond Celiac)
• Gut Health Podcast (covers add’l digestive issues)
• Gastro Girl (covers add’l digestive issues)

Have you listened to The Celiac Project Podcast? What other Celiac Disease or gastro- related podcasts do you listen to?

Originally Published October 2017

The post The Celiac Project Podcast- Talking with Mike and Cam appeared first on MI Gluten Free Gal.

Is Vernors Gluten Free?

So in 2019, as stated, a reader expressed concern, after drinking Vernors. She stated she became ill after drinking it. She tested it with her NIMA, and it displayed “gluten found.” She called Dr. Pepper (who owns / produces Vernors) and they told her it contained gluten. So I did a quick online search, because I drink Vernors all the time. Nothing on the Vernors website about gluten, but I did find this on the Dr. Pepper website.

True, while Dr. Pepper is obviously not Vernors, the above statement on their FAQ page concerned me. (One of which is that we no longer call it “Celiac Sprue” and also because this organization no longer exists.) Their statement about corn gluten, , IMO, causes undue concern for those with Celiac Disease. So what is corn gluten?

How Does Wheat Gluten Differ from “Corn Gluten?”

The concept of gluten causes confusion. Some will even tell you gluten doesn’t exist without kneading. (Insert eye roll.) Technically, gluten is the combination of prolamins and glutelin. These are both found in the endosperm of the the grain. This “What is Gluten” diagram from Celiac Kids Connection explains it better than I ever could.

In wheat, the specific glutelin is “glutenin.” For those with Celiac Disease, it is specifically the glutenin and the prolamin gliadin that cause a reaction. (The proteins in barley and rye are also problematic.)

Sometimes people call the protein in corn “gluten,” but it isn’t the same thing. The primary protein in corn is Zein. It is not the same protein that triggers an autoimmune reaction in people who have Celiac Disease. Just like “glutinous rice,” those with Celiac Disease can also consume corn.

“But I Read Somewhere Corn’s Not Safe”

So where does this idea some from? A website cites this study. Maize prolamins could induce a gluten like cellular immune response in some celiac disease patients.  However, the abstract states, “for some CD patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response.” Also, this study was done “in silico,” which means “computer simulation.” Not in people. Therefore, this study is more hypothetical than practical.

Can you have a corn intolerance or allergy? Absolutely, as explained in this post from Beyond Celiac. I am not dismissing the fact that corn may make you ill. I am simply addressing the false concept that all people with Celiac Disease can’t eat corn. We have enough anxiety, and I’d like to relieve some of yours, if I can.

What is Corn Gluten Meal?

Corn gluten meal is a byproduct of milling wet corn, and it’s added to pet food and other animal feed. This article from the University of Illinois Urbana Champaign explains clearly why it contains no gluten, and why it is a misnomer.

“By the name of the coproduct, one would think that corn gluten meal contains gluten, when in fact, it contains 60 to 70 percent protein and is 100 percent gluten free. It’s a misnomer. There is no gluten in corn gluten meal.”

Back to Vernors and Dr. Pepper

In light of all of this, I contacted Dr. Pepper. I asked if Vernors contained gluten, and if so, to name the source of the gluten in their soda. Specifically, I asked if it contained wheat, rye, barley or corn. This is the reply I received.

“Thank you for contacting us about Vernors. We’re always excited to hear from our consumers. Your comments give us valuable input about our brands and how they are enjoyed.

For a full list of our gluten free products please visit the following website: https://www.dpsgproductfacts.com/en/discover/GLUTEN_FREE.

Again, thank you for taking the time to contact us, Margaret. We greatly appreciate your feedback!”

What Dr Pepper Products Are Gluten Free?

So what Dr. Pepper products are gluten free? Based on the link they gave me, not a single one of their sodas. No Vernors. Not even Dr. Pepper. Which is ironic, since the individual Dr. Pepper website states  IT IS gluten free. So I did some more digging. I found this Vernors Ginger Soda Customer Report on their site. It states which allergens are present / absent in Vernors.

Note that, in this document available on their website, they list wheat and gluten both as “absent.” It specifically lists gluten “sourced from but not limited to wheat, rye, barley, oats, spelt, and buckwheat.” (P.S., buckwheat is a naturally gluten free food.) So based on this document, Vernors contains no wheat, rye, barley or oats.

What Dr. Pepper Products Do Contain Allergens?

The Dr Pepper website also has an “allergens” page. They list their products by which allergens they contain. Dr. Pepper even discloses which products contain grapefruit, sulfites and quinine on this website page. The only product listed containing gluten is their Horseradish Bloody Mary Mix. Not Vernors.

But What About the NIMA Result?

On the NIMA website, they disclose information about using their testing kit. This page highlights what it can and can’t test, and when to use caution in testing. At the bottom of this page, is states that NIMA is not validated to test carbonated beverages. So was the result in her test accurate? Maybe. Maybe not.

Is Vernors Gluten Free?

In general, I hate the idea of “whatever works for you.” I like hard facts. However, in the end, you’ll have to decide this one for yourself. I find nothing in the ingredient list to concern me. If Dr Pepper only uses wheat in their Bloody Mary Mix, I doubt it will end up in Vernors. Any shared equipment would have to be cleaned thoroughly to prevent transfer of flavors. Not to mention the Bloody Mary Mix is not carbonated.

The big take away is this. We need companies to better understand what gluten is and what it is NOT. Sadly, this is not the first company to tell people that their product contains gluten due to the presence of corn. Dr. Plogsted shares how some pharmaceuticals think corn constitutes gluten in their medications. Sigh.

Ask Your Own Questions

In the end, contact companies directly if you have a question about a product. Question sources, even if that source is me! I can be just as wrong as anybody else.

Note- I contacted Dr. Pepper again after their initial email requesting more information. I also provided the links to the images I shared here, asking for further clarification. When I again asked if the gluten in their products was from wheat, rye, barley or corn, this was their reply. 

“Unfortunately that information is proprietary. If you have any health concerns we advise abstaining from using the product. The products listed on our Gluten Free page are the products that do not contain any gluten.”

Originally Published October 2019

The post Is Vernors Gluten Free? : A Corn Gluten Study appeared first on MI Gluten Free Gal.

The Scientific Method

But let’s go back to the scientific method. What are the proper protocols for experimentation? Science Buddies, a science non-profit geared toward helping school age students learn about science states– “Test Your Hypothesis by Doing an Experiment:” It is important for your experiment to be a fair test. You conduct a fair test by making sure that you change only one factor at a time while keeping all other conditions the same.”

In other words, we should only have ONE variable, one change. In a study, only one aspect should differ from all other tests. However, there are multiple variables in this study that cannot be controlled. Here are four that concern me the most.

Gluten Free Restaurant Study Concern One – Testing Personnel & Practices

Gluten Free Restaurant Study Concern Two- Testing Devices

Dr Benjamin Lerner states he crowd sourced data from the NIMA app from 804 users. Therefore, testing in the study utilized (theoretically) 804 separate NIMA units to conduct “more than 5,600 gluten tests over 18 months.” (Health Day) Did users keep and store their gadgets in safe environments? Is it possible some may be defective? This is a factor that can’t be monitored.

Gluten Free Restaurant Study Concern Three- Testing Accuracy

Gluten Free Restaurant Study Concern Four- Testing Motivation

Drawing a Conclusion

I’d love to hear your thoughts on this as well. Please feel free to share your own respectful thoughts and ideas. 

Originally Published October 2018

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A Very Scary Halloween

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 recently scares me most is faulty info based on the NIMA gluten sensor.

Halloween was unique for me in 2017. 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 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.

What is a NIMA Partners Gluten Sensor?

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.

Not Everything You See Online is Accurate

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 Fairmont, Minnesota and let me stop at a grocery store to check. 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.

Nestle 100 Grand Bars Contain Barley Malt

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 (in 2017) as to how this could happen. (Names of other Twitter users blocked out to protect privacy.)

NIMA Sensors Cannot Test for the Presence of Barley Malt

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, such as soy sauce, could come back as being “safe.” This is something that definitely doesn’t bring a smile to MY face. 

What Other Limitations Do NIMA Testing Devices Have?

After a quick visit to the NIMA Partners website, their “gluten manual” states the following limitations

“NIMA Partners has not been validated on medication, cosmetics or non food items.” Therefore, be wary if you see an Instagram influencer use their NIMA to test medications, whether prescription or over the counter. Other NIMA limitations include:

Other Red Flags

In addition, their manual gives additional advice on how to test foods that are thick/ dense, dry/ powdery, and brightly colored. Foods in these categories may return inaccurate results. “Bright foods can interfere with the sensor’s ability to read the result. These foods should also be mixed with water to dilute the coloring.” This includes red foods, such as pizza sauce or marinara. 

Three Things to Remember

1. Ingredient Lists Aren’t Required on Mini Candy Bars

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 Allergens Under FALCPA

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 9 allergens that must be declared under the FALCPA guidelines. (FALCPA = Food Allergen Labeling and Consumer Protection Act) The Top 9 include wheat, fish, shellfish, eggs, dairy, peanuts, tree nuts, soy and sesame. The person that originally posted the 100 Grand bar on Instagram relied on the fact that the allergen warning did NOT list wheat. They falsely concluded it therefore must be free of gluten. 

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. Read my thoughts on a restaurant study performed via NIMA testing, for more info. 

My Final Thoughts About the NIMA Partners Gluten Sensor

So here is where I voice my opinion. NIMA has become a controversial issue in the Celiac Disease community.  I try not to share my own opinion about the NIMA too often. Instead I attempt to share facts of how how it performs, and allow you to make your own educated decision. However, based on that evidence, I am not a fan of the device. I fear it leads to more anxiety about eating gluten free, not less. 

Safe Gluten Free Halloween Candy

Many sites exist that offer gluten free Halloween Candy lists. A few examples include- 

• Celiac Mama’s Gluten Free Halloween Candy List (updated Sept 2022)
• GF Jules Gluten Free Halloween Candy List
• Beyond Celiac Gluten Free Halloween Candy List

Do you own a NIMA? What do test with it? What holiday candies do you trust to be gluten-free?

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