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

The post Celiac Disease Resources in Michigan and Beyond appeared first on MI Gluten Free Gal.

Misinformation vs Disinformation on the Gluten Free Internet

There’s lots of misinformation and disinformation. Misinformation is false information that is shared, but usually without ill intent. Think about the game of telephone you played as a kid. Someone says something, and by the time it gets to the end, the message is different. 

Disinformation, however, is different. It is the dissemination of intentionally false statements. Sometimes accounts share disinformation to create fear or anger. Sometimes it’s simply for financial profit. as explained in this NPR article. Like THOUSANDS of dollars. Both misinformation and disinformation on the gluten free internet can negatively impact us physically and emotionally, as we strive to stick to our gluten free diet.

Where Do You Get Your Gluten Free Information From? 

When it comes to Celiac Disease, where we get our information from is as important as the info itself. For instance, I wouldn’t go to my podiatrist for heart surgery. Likewise, you need to get your gluten free information from someone who has spent considerable time studying (or living with) Celiac Disease. 

My husband is an 8th grade teacher. He teaches internet safety to his students. One of the guides on this topic that he finds helpful is this Guide on Evaluating Resources from Berkeley University.

Things to Consider When Reading Gluten Free Posts on the Internet

When you encounter any kind of source, consider the following:

Authority – Who is the author? What is their point of view? What are their credentials?
Purpose – Why was the source created? Who is the intended audience?
Publication & format – Where was it published? In what medium?
Relevance – How is it relevant to your research? What is its scope?
Date of publication – When was it written? Has it been updated?
Documentation – Did they cite their sources? Who did they cite?

Primary vs Secondary Sources

Consider the source while searching for information on the gluten free internet. Does someone’s summary of a study actually match the conclusions of the researchers? When someone shares something, can you find a primary resource to back up their statement? Be a conscientious sharer. 

Celiac Medical Professionals and Qualifications

Doctors

As Celiac Disease interactions happen in the intestine, gastroenterologists are the experts in this field. It’s true that some are more knowledgeable than others. However, this is who you should seek out for testing. These types of doctors will often have an M.D after their name (possibly a D.O.), showing their certification. 

However, there are plenty of people on the gluten free internet who may use the term “doctor,” that haven’t gone through medical school. Case in point- “Doctor” Peter Osborne of the “Gluten Free Society”. It isn’t until you get to the very bottom of his personal page, in fine print, that he states he’s not a medical doctor. His license is through the Pastoral Medical Association. As this NPR article on pastoral medical credentials points out, this is basically a credential that requires no medical school or internship.

Dietitian vs Nutritionist vs Health Coach

I fear that the gluten free internet has led to confusion on how these professions are different. Of the three, a Registered Dietitian (R.D.) has the most extensive training and licensure. Dietitians must have a bachelor’s degree from an accredited university, complete an internship, pass a national exam, and complete continuing education credits.

A Nutrition Specialist must also have a degree, possibly in nutrition and/or in Public Health. They usually work to promote public health programs, as their license doesn’t allow them to diagnose and treat medical conditions. Both of these roles are important parts of community health. 

What About Health Coaches?

What requirements are needed to be a health coach? VeryWell shares different Health Coach Certification Programs available. Some require college classes. However, a prominent program only required 6 months of training. No medical degree. No internship. 

While it is possible that some online health coaches have bachelor’s degrees in a health related field, not all do. I recently read Oona Hansons’s article about how seeing a health coach negatively impacted her health and her relationship with food. Those with Celiac Disease are already at a greater risk for eating disorders. Please be careful about who you take dietary advice from. 

Gluten Free Social Media

Influencers and Celiac Disease Advocates

Many people on gluten free social media realm, like myself, are people living with Celiac Disease, with no medical degree. We share our experience, products, and information from Celiac Disease non-profits and other resources. Some of us have been been living with the disease for a long time. Others have been recently diagnosed. One thing to remember- The higher number of followers does not necessarily mean more in depth knowledge or expertise.

What Kind of Person Does Social Media Inspire You to Be?

There are lots of great, caring people in the gluten free community. However, be aware of people who make divisive statements or use fearmongering to grow their social media and website reach. The more emotional a post is, the more likely you are to react and engage. I find Tobias Stockwell’s article How Your Fear and Outrage are Being Sold for Profit, to be very enlightening.

Also evaluate how their posts make you feel and interact with the world. I love the above quote and Instagram post from Carlos Whittaker. In it he asks “Do the accounts you follow cause you to pursue love & understanding of others, or anger and despising of others?” I see SO many social media posts that are basically “clap backs” at people who don’t understand the gluten free diet. But making us angry without giving us ideas for solutions, doesn’t help either.

Financial Disclosures Required by the Federal Trade Commission

Did you know that the Federal Trade Commission has rules on how social media accounts must disclose product and profits they receive? Those that fail to do so could be fined by the FTC. More than that, gluten free social media accounts should always be transparent & honest about free products they receive or sponsored posts they share. Make sure you’re following accounts who are being honest in all they do on social media. 

How to Wisely (and Kindly) Use Facebook and Instagram

Part of using the gluten free internet is knowing how to use various platforms wisely. For example, Facebook groups can be very helpful. One of the benefits is that anyone can post their thoughts, opinions, or product finds there. However, that’s also their downfall.

If you see something in a group that doesn’t seem legit, first alert the group administrator. Then try to see if you can find a primary source to confirm or disprove their statement. If you can provide a reputable link, that’s great. However, this does not mean to start a heated dispute in the comments. What you say reveals your integrity more than theirs.

The Connection Between Social Media, Fear and Mental Health

Last week, I chatted with a friend about her concerns about the gluten free internet. The amount of fear (and fearmongering) she sees in Facebook groups is troubling. She brought up a great point. If we constantly live in fear, what coping mechanisms are we passing on to our children? Especially if the child is the one with Celiac Disease? 

While Celiac Disease is serious, and we do need to be aware of what we’re eating, hypervigilance can dramatically lower our quality of life. Sometimes, participating in online gluten free chats, full of misinformation, can exacerbate that. Facebook and online groups CAN be helpful. Just be wise in what kind of internet “diet” you’re consuming. 

Learning to Be a Critical Thinker, Online

Now more than ever, we need to learn to think critically about what we read on the gluten free internet. This includes both questioning what we see, but also being willing to unlearn mistruths we’ve held on to. For our gluten free community to flourish, we need to learn how to interact with those whom we disagree. If the rest of the world think gluten free is “weak” or “whiny,” we need to prove them wrong by being strong, together. 

I offer a few recommendations for books on critical thinking. Adam Grant’s book “Think Again” offers great insights on being willing to listen and reevaluate ideas. I read great reviews about the book, “Raising Critical Thinkers: A Parent’s Guide to Growing Wise Kids in the Digital Age.” This might be a good read for adults, too, parent or not. (Book links are Amazon Affiliate links. I earn a small commission. It does not impact your cost.) 

Final Thoughts on the Gluten Free Internet

There are many great benefits to the online Celiac Disease community. While I’m technically the advocate, I learn so much from my followers. New restaurants, new products, and sides of living with Celiac Disease I may not have thought of before. Please know this post is not meant for you to kick the internet and social media to the curb. 

I just want us to digest what we read on the internet, wisely. Think about why someone may have written something. Does the tone they use make you feel enlightened and more confident, or despondent? In the end, my goal is to help you feel more informed and capable to live with Celiac Disease. And to live it abundantly. 

Looking for sites with trusted information? Check out my list of Celiac Disease Resources, including support groups that meet face-to-face in Michigan. In addition, I share Facebook groups I belong to, and trust. 

Originally Published in 2022

The post Navigating the Gluten Free Internet appeared first on MI Gluten Free Gal.