Michigan Face-to-Face Gluten Free Support Groups

Kalamazoo Area Support Group –

Monthly support group meetings: 2nd Tuesday of each month at 7pm
They meet at The Cellar at 328 which is the Jaqua Realtors Building.

The address is 328 West Milham Ave, Portage MI 49024.

Find more information at their website. https://www.glutenfreekzoo.org

Jackson Area Support Group

Meets last Monday of the month. They meet from 12-1 pm at the The Arbor Church. The address is 120 E Main St, Spring Arbor MI 49283. Find more information about the South Central Michigan Support Group on the National Celiac Association website. 

Muskegon Support Group
They usually meet the 4th Tuesday of the month, May through August. The May meeting is a Central Park in Grand Haven. Other meetings are usually at Pomona Park in Fruitport, MI.
Meetings are outdoors, so bring a chair. They meet from 6:30- 8 pm.
You can contact them via email for more information.  glutenfree_muskegonarea@yahoo.com

Michigan Based Online Gluten Free Support Groups

• Greater Lansing area Online Support Group
• Greater Grand Rapids Gluten Free Support Group (Lots of great restaurant recommendations!)
• Gluten Free in Metro Detroit FB group
• Celiac Disease in Southeast Michigan
• Gluten Free Ann Arbor Group
• Gluten Free Moms  in O-Town FB Group
• Traverse City Celiac and Gluten Free Support Group
• Gluten Free in Northern Michigan
• Muskegon Area Celiac Support Group
• Kalamazoo Area Celiac Support Group
• Gluten Free Michigan
• Living Gluten Free in Michigan

United States Gluten Free Facebook Groups

• Gluten Free Living and Recipe Share FB Group (United States FB group)
• Gluten Free Recipe Sharing (US Group)
• Gluten Free Aldi US Finds (US Group)
• Gluten Free Costco Finds (US Group)
• Parents of Gluten Free & Celiac Kids (US Group)
• Gluten Free on the Road – Great for travel dining recommendations (US Group)

In-Person Gluten Free Events – US and Canada

• New England Gluten Free Expos –
  • Connecticut, Philadelphia, Massachusetts, New Jersey
  • February, July, September, November (respectively)
• G Free Fest – Rhode Island (March)
• Mai Fest – Lakefront Brewery – Milwaukee, Wisconsin (May)
• Mad Fest – Madison, Wisconsin (June)
• Gluten Free Farmers Market – Denver (Multiple Summer Dates)
  • 2nd Saturday of the Month June – October
• Michigan Gluten Free Kids Camp – August
• My Gluten Free World Expo – Sandy, Utah
• Gluten Never Ever Expo – Merrimack, NH
• Nationwide Children’s Hospital Celiac Disease Center Conference 
  • Annually in late October or November
  • While this conference is geared towards parents of children with Celiac Disease, there are very informative presentations.
• National Celiac Association Events Calendar
• Beyond Celiac Events Calendar

Canadian Events

• Gluten Free Garage – Toronto, Canada (May)
• Gluten Free Expo – Vancouver & Calgary, Canada (September) (Calgary in March 2027)
• Gluten Free Goodness Expo – Ancaster, Canada (November)

National & International Celiac Disease Resources and Organizations

• National Celiac Association They offer a free monthly online newsletter. Paid members receive a magazine every quarter. They also hold conferences on the east coast.
• Beyond Celiac is another Celiac Disease advocacy group. They also offer a free newsletter. They were previously called the National Foundation for Celiac Awareness.
• Gluten Intolerance Group – The Gluten Intolerance Group has a free membership and sends an online magazine. They have support groups in some states, but nothing here in Michigan. This organization operates the GFCO gluten-free certification logo. (The GF inside a circle.) They perform research, publish articles and are a force of advocacy in our community.
• The Celiac Disease Foundation shares research on their website and through their free newsletter. They have a conference in California every year as well.
• Canadian Celiac Association – The main organization offering Celiac Disease resources in Canada.
• Coeliac UK – The main Celiac Disease organization for the United Kingdom.

Doctors and Dietitians I Trust

• Dr Ritu Verma and Staff at Univesity of Chicago Celiac Disease Center. 
• Dr Joseph Murray at Mayo Clinic
• Dr Alessio Fasano at The Center for Celiac Research and Treatment, Boston
• Maureen Leonard at The Center for Celiac Research and Treatment, Boston
• Gluten Free Watchdog
  • Follow her for latest research and updates on gluten-free product labeling. She is not tied to any organization, but is an independent advocate. She truly has the best interest of this community at heart.
• Lori Welstead, R.D. at University of Chicago Celiac Disease Center
• Melinda Dennis, R.D, dietitian connected with the National Celiac Association
• Amy Keller R.D.

Phone Apps

• Find Me Gluten Free– The website and phone app is a lifesaver when you are traveling. On their website, you can plug in the zip code of a city that you are visiting and see a display of gluten free restaurants, bakeries, and stores in the area. When you are on your cell phone, the app uses your GPS location to show locations nearest you.
  • A WORD OF CAUTION. This app is meant to be a “starting off” point. Use it for recommendations, but always ask questions about ingredients and food preperation before dining.
  • Traveling and looking for a local resource? Check out my Gluten Free Bloggers of the United States post. 

A Word Of Caution on Grocery Store Scanner Apps

In general, I do not advise relying on them. Product labels and ingredients often change. Those apps rely on input by a few persons, and mistakes can be made. Too often in Facebook groups I see people ask why the scanner marked something unsafe, when it is in fact gluten free. You are better off doing your research and being an informed shopper.

Warning About “Explore Michigan”

I have seen an influx of posts about gluten free options in Michigan on the Explore Michigan page. THIS IS AN AI WEBSITE. It’s a scam. The owners are based in Bosnia, not the US. Their articles are full of incorrect restaurant information and wrong photos. I daresay their list of writers is also made up. See my Facebook post to learn more.

Be Careful Where You Get Your Information

I try to keep things positive, and rarely try to say where NOT to get your information from. However, there is plenty of misinformation on the internet, and it leads to confusion and anxiety. There are a few things I want to make sure you’re aware of.

1. A “health coach” is not the same thing as a registered dietitian. Even those who use the term “nutritionist” are not necessarily a registered dietitian. A registered dietitian has gone through many years of college, training, and independent cerification to show they know important material.
2. See a board certified gastroenterologist. See the person who has studied and specialized in the disease you are trying to alleviate. I wouldn’t go to an eye doctor to perform a hysterecomy. So please get your information from those who have spent the extra years of work studying it.
3. Go for information, not manipulation. Be careful of headlines or articles that seem too good to be true. In addition, be cautious of sites that play on your emotions and lead you to feel fearful or consisently angry. Be wary of sites that use scare tactics such as “Click here for information others aren’t telling you.”
4. Please stay away from Gluten Free Society. Org. It is run by “Dr. Osborne,” but his personal website specifically states (in the small print) “Dr. Osborne is not a medical doctor. He does not treat or diagnose disease. Dr. Osborne is licensed with the Pastoral Medical Association.” (Read this NPR article which explains the concerns around the Pastoral Medical Association.) Mr. Osborne also falsely states on his website that corn, rice teff, milllet and buckwheat are not gluten free.
5. For more on avoiding misinformation, see my post on how to Navigate the Gluten Free Internet.

To make a long story short, you are NOT ALONE on this journey! We are all here to help. What other Celiac Disease resources do you rely on? Please mention them in the comments below, and I may end up adding them to my post!

Originally Published Nov 2012

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Despite the Name, Maltodextrin Does Not Contain Malt

When diagnosed with Celiac Disease, we are taught to read labels for sources of gluten. Sources of gluten contain wheat, rye and barley, and their derivatives. We consistently reference barley malt, as it is often overlooked. However, please know that while the names are similar, maltodextrin and malt are not the same thing. 

What is Maltodextrin?

Per Healthline, “Maltodextrin is a white powder made from corn, rice, potato starch, or wheat. Even though it comes from plants, it’s highly processed. To make it, first the starches are cooked, and then acids or enzymes such as heat-stable bacterial alpha-amylase are added to break it down further. The resulting white powder is water-soluble and has a neutral taste.”

Is Maltodextrin Made from Wheat?

Yes, maltodextrin can be made from wheat. (However, it is most frequently made from corn.) Per Gluten Free Watchdog, “Under FALCPA, if an FDA-regulated food product contains maltodextrin and the maltodextrin contains protein derived from wheat, the word wheat must be included on the food label (e.g., maltodextrin (wheat).

If you don’t see the word wheat on the label of an FDA-regulated product containing maltodextrin, the food product does not contain wheat protein as an ingredient.” 

Maltodextrin is Highly Refined and Considered Gluten Free

However, even if maltodextrin is made from wheat, it is generally considered safe on a gluten free diet. Per the Gluten Intolerance Group, “Maltodextrin is made through enzymatic hydrolysis using water, enzymes, and acids to break down the starch in the source vegetable or grain. The resulting product is a white powder made up of chains of sugar molecules and no gluten proteins, even when derived from gluten-containing grains.”

Beyond Celiac and the National Celiac Association also state on their respective websites that maltodextrin is considered to be gluten free, even if the grain source is wheat. Allergic Living states maltodextrin as gluten free in their article “Gluten Free or Not? 10 That Can Stump Even the Most Informed.” (Written with Shelley Case, R.D.) 

Maltodextrin is One of Many Additives Deemed Gluten Free

Maltodextrin is among many food additives which are considered gluten free. The National Celiac Association article, “Ingredients People Question on a Gluten Free Diet includes a table of multiple additives people ask about.

Choose Your Sources Wisely

A WebMD article on maltodextrin states, “If you have celiac disease, be careful about eating foods with maltodextrin. The powder has traces of gluten if its source is wheat.” Listen, I’ve used WebMd in the past. However, I think of WebMD like a primary care physician. They know a little about a lot. For Celiac Disease information, I prefer sites that specialize in my disease. 

Verify Facts that Make You Anxious/ Afraid

Reading food labels can be very intimidating. When you’re trying to keep you and your family safe, you want to be informed. However, I want to caution us when we see something on social media that immediately makes us afraid. Before you make a knee jerk reaction, check with other trusted resources to verify that information.

Also, as I’ve mentioned previously in my article about navigating the internet, be cautious of accounts that may play on your emotions. Posts that intentionally cause anxiety and fear tend to get higher engagement because of immediate shares. Be informed, but don’t allow yourself to be manipulated. 

What other ingredients have you been baffled by? Leave me a note in the comments. 

The post Is Maltodextrin Gluten Free? appeared first on MI Gluten Free Gal.

I love Aldi. They sell many gluten free, money saving, products. However, I remembered a notice on the Gluten Free Watchdog Facebook page about a bratwurst they sell. They label these sausages as “gluten free.” However, they also list “beer” as an ingredient.

Now, in the United States, the FDA denies a gluten free label to anything that contains malt as an ingredient. Unless made from 100% gluten free grains, most beers in the world do not meet that criteria. However, this product falls under the jurisdiction of the USDA, not the FDA. Why? Because it contains meat. Therefore, I contacted Tricia Thompson a.k.a Gluten Free Watchdog on what to do.

She directed me to this article on her website, that outlines the steps on reporting a misbranded gluten free product to the USDA.

At the time I spotted this, our country found itself in the midst of a government shutdown. Therefore, many USDA employees lacked a job, or the income which which to perform it. I called the phone number she listed, but an automated reply stated the service was not available. Therefore, I turned to the power of the internet, and contacted the various parties involved with my facial misbranding concerns.

How to Report a Concern to Aldi, Online

I used Aldi’s online contact form to report my facial misbranding concern, first. If at all possible, I attempt to connect with the immediate business. I have done so in the past with success. Often, it accomplishes things quickly. I used their online comment system, filling out my complete concerns, and uploading the pictures I took. It took me less than 10 minutes to do. They impressed me by calling my back the same day! They listened to my concerns, gave me a claim number, and told me the supplier would get in touch with my. (To date, they have not.)

Reporting Facial Misbranding, Online, to the USDA

I used the online USDA reporting system Gluten Free Watchdog told me about. Like the Aldi system, I found it easy AND QUICK to use. It only took my information, and did not allow me to upload pictures. Surprisingly, the USDA promptly emailed me and asked me for more information. They requested a list of information, and I took time to address each one. Below is the bulk of the email I sent them, about the facial misbranding of the Aldi sausages.

“My concern about the misbranding / mislabeling is that while this item is marked “gluten free” by Aldi, it contains beer. While I know that the FDA definition of “gluten free” is not necessarily also delegated by the USDA, it is my understanding that the USDA feels that meat and poultry producers should follow this law. Per FDA regulations, nothing can be declared gluten free if malt is an ingredient, even if that product tests to under 20 ppm. Being that Aldi prices are relatively cheap, I am highly doubting that these Aldi Beer Bratwurst are made with beer that originated from non-gluten grains. Also, these sausages are imported from Germany, and did not originate in the United States. This gets trickier, because Europe’s definition of “gluten free beer” is different than the US. The US does not allow “gluten removed” beers to be labeled as gluten free, where as Europe does. Also, Germany is now making beer with an altered form of barley called “Kebari” that I don’t think is approved for US consumption. It may be possible that the beer in these brats is made with that.

No Establishment Number?

The USDA asked for the establishment number (inspection number) for the sausages. However, Aldi imports these sausages from Germany. They are not inspected in the United States. Foreign products sometimes utilize a different numbering system. After a minute or two of online research, I discovered that the “EV-717” Vet. Control No traced back to a plant in Germany. This number specifically relates to the plant where HoWe’s sausages were produced.

Interaction with HoWe’s

While neither Aldi nor the USDA directed me to do so, I contacted HoWe. Their website states all their products are gluten and lactose free. Therefore, I emailed them inquiring “What is the grain source of that beer? Is the beer made with only gluten free grains, or does it contain malted barley?” Their first reply simply stated that the ingredients and product test to under 20 ppm of gluten. I replied to their email, asking them to answer my original question. They replied, “We can confirm, that the beer does not contain malted barley.” But what will the USDA say?

Response back from USDA –

Two weeks after submitting my facial misbranding the concern, I received the following response from the USDA

“Dear Margaret,

Thank you very much for the additional information, and for your patience. Upon investigation, we determined that the product is not expected to contain a level of gluten that would pose a risk to public health. However, the company will be required to remove the “gluten free” claim from the label. Please find attached a formal letter regarding the outcome of your case.” (emphasis mine)

It takes a village, friends. The government is understaffed, underfunded, and some manufacturers are uneducated. The USDA & FDA don’t need us to be their enemies. They need us to be their eyes and ears. We need to continuously encourage them to do the right thing. Squeaky wheel gets the grease, right?

If you need to report a packaged food item, that contains gluten AS AN INGREDIENT (not a may contain statement), use this link to contact the FDA. Gluten Free Watchdog also shares what to do whenspot a labeled gluten free food that contains gluten.

The post Facial Misbranding: How To Report It appeared first on MI Gluten Free Gal.

For the sake of this post about gluten free oats, I’m breaking down oats into four categories. These include standard oats, mechanically sorted oats, purity protocol gluten free oats, and certified gluten free oats.

Standard Oats

BUT I THOUGHT OATS WERE GLUTEN FREE? 

How would you define standard oats? (Sometimes people also call standard oats “commodity oats.”) These oats undergo no special treatment. Farmers grow them in fields that may be in proximity to wheat, rye and barley. They likely use the same trucks and processing equipment for multiple grains. Because of this, I would never deem these to be “gluten free oats.”

Research supports my opinion. In her Special Report On The Use of Oats in Gluten Free Foods, Gluten Free Watchdog highlighted the ppm results of various standard oats. She reported that one batch of standard Quaker oats tested as high as 1,861 PPM. That’s 93 TIMES HIGHER than the gluten free definition of 20 ppm. Researchers published in the Canadian Journal of Gastroenterology and Hepatology similar results. Of 133 oat samples, only 9 samples were found to contain under 20 ppm. The other 124 samples had gluten ranges of 21 – 3,800 ppm.

Mechanically Processed Oats

Can you identify this grain? I used this (and other free) pictures from Pexels for this post. Pexels marked this as “Wheat Grains Closeup Photography.” How does this tie in with “Mechanically Sorted Oats?” Machines use optic abilities to sort oats from wheat, barley and rye. Some batches test under 20 ppm. Some do not. As Gluten Free Watchdog mentioned in her report on gluten contamination levels of oat products, 5 products using mechanically sorted oats tested at above 20 ppm. These definitely don’t qualify as gluten free oats.

Cheerios continues to be the biggest user of mechanically sorted oats. Did you know Cheerios does not test individual batches of cereal? Gluten Free Watchdog explains their process in her post “Gluten Free Cheerios Take Two.”

How General Mills Tests for Gluten in Cheerios

“General Mills pulls 12 to 18 boxes during a 24 hour production cycle, grinds the contents of each box, takes a sample from the contents of each box, mixes all the samples together and regrinds, tests 12 sub-samples, and averages the results to provide a lot mean.” (via Gluten Free Watchdog)

Therefore, they blend multiple lots together, and then take a sample. So in a sense, they are taking an average of multiple lots. In the same Gluten Free Watchdog post, Tricia stated one of the lots tested above 90 parts per million. But since the other lot tested so low, the mean test result was therefore under 20 ppm. And put on shelves.

Not a fan of Cheerios? Check out my list of similarly shaped, gluten free cereals.

Purity Protocol Gluten Free Oats

Unfamiliar with the term “purity protocol?” Gluten free oats grown under these  standards abide by a general set of guidelines. Only recently did oat growers develop a Definition of the Purity Protocol for Producing Gluten-Free Oats. These farmers grow their oats in dedicated fields and use strict standards for processing. Celiac Disease advocates (such as myself) suggest using only purity protocol oats.

This method of farming is still gaining traction. More and more gluten free food producers understand the importance of starting with a pure oat product. Manufacturers using purity protocol oats include Enjoy Life Foods, The GFB, and many more. I suggest bookmarking Gluten Free Watchdog’s Listing of oats produced under a gluten free purity protocol as a handy reference. If you know a brand using purity protocol oats, please use that link to get them on it!

Certified Gluten Free Oats

“Therefore, certified gluten free oats are purity protocol oats, right?”

Not so fast, Jack. Some certifying organizations allow manufacturers to use mechanically sorted oats in their gluten free items. Certified gluten free oats MUST still test below 20 ppm, and meet other stipulations of the certifying organization’s guidelines. For example, some companies use a blend of purity protocol oats and mechanically sorted oats. The Gluten Free Certification Organization will still certify these products, requiring their oats and their finished products to test under 10 ppm.

An additional interesting fact. Technically, the FDA claims using the words “gluten free, certified, or purity protocol” before the word “oats” in the ingredient list is against the rules. The FDA encourages brands to use those words elsewhere on the package, but not in the ingredient panel. Therefore, just because you DON’T see “certified” or “purity protocol” before the word “oats” doesn’t mean they’re not. (Some brands still put it in the ingredient list. The FDA says they aren’t as strict on this rule.)

Gluten Free Oats – Where To Go From Here

We go back to asking every brand their oat sourcing. (Or use Tricia’s aforementioned list.) Just make sure you know what you’re eating. Maybe you’re fine with mechanically sorted, certified gluten free oats. That’s okay. In the end, I just want all of us to be educated about what we’re eating. Safety first.

Originally Published January 2019

The post Gluten Free Oats: Differences Defined 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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