“I get by with a little from my friends.” More than just song lyrics, this rings true for the Celiac Disease community. The joint efforts between local support groups, online entities and national organizations help advance awareness of this disease. May these Celiac Disease resources help you advance your own health and healing.
Michigan Face-to-Face Gluten Free Support Groups
Kalamazoo Area Support Group – Meets second Tuesday of the month in Gilmore Center at Bronson Hospital at 7 pm. Find more information at their website. (currently thru Zoom)
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 meet the 4th Tuesday of the month at 6:30 pm. Meetings take place at Calvary Bible Church, 4617 Grand Haven Road Norton Shores, MI.
You can contact them via email for more information. glutenfree_muskegonarea@yahoo.
Michigan Based Online Gluten Free Support Groups
Greater Grand Rapids Gluten Free Support Group (Lots of great restaurant recommendations!)
Gluten Free Living and Recipe Share FB Group (United States FB group)
Gluten Free Events
Nationwide Children’s Hospital Celiac Disease Center Conference – Annually in November or late October
While this conference is geared towards parents of children with Celiac Disease, there are very informative presentations. Here is a recap from my last attendance at this event.
Central PA and Gluten Free Philly Expo
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 Dietitans I Trust
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
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.
Allergy Eats – This app allows you to find restaurant reviews. Unlike Find Me Gluten Free, this app allows you to search based on other food allergy restrictions as well. Available for both Apple and Android phones.
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.
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.
- 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.
- 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.
- 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.”
- 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.
- 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!