The Gluten-Free Rumor Mill - Celiac Disease
Sep 26 2009

The Gluten-Free Rumor Mill

In case you didn’t know, the rumor mill isn’t a dedicated gluten-free facility. In fact, stories about ingredients, companies, illnesses, websites, and even personal attacks are common among many support groups and websites. It is important to know where to find trustworthy information and to be your own researcher. There are simple, and sometimes fast ways to find information without putting your health in the hands of someone else.

Every year, around Halloween, there is a R.O.C.K. gluten-free candy list that is shared by a yahoo group called Silly Yaks. This information has been researched by the people supplying the information. One year there was a frenzy over the twizzlers because they were listed as unsafe, and that is true, in the United States. It is important to remember that the internet opens our conversation to people who are not in the same area, or country, and there is information that is country-specific when it comes to food manufacturers. There was also some controversy over Milky Way bars. Milky Way bars contain barley malt, and are therefore not gluten-free, but that does not mean that all Mars products are not gluten-free. It is very important to read the label for yourself, and not simply trust a group or list.

There have also been heated arguments on community message boards about gluten in toilet paper, milk, coca-cola, and MSG. It is important to remember that members of a community message board are just that, members of a community message board. When looking for information about food ingredients, trust a professional in that area. Danan Korn, Cynthia Kupper, and Shelley Case are all gluten-free experts and professionals in the gluten-free food ingredient field. Information about safe products should be cross referenced with information from experts.

Informational websites can be tricky. Remember to filter all information through the common sense filter. If you aren’t sure about something, do a little more research. It may seem odd that Buckwheat is listed as a safe grain, but by researching Buckwheat further, you find that it is not in the wheat family at all. Spelt may seem like a fine grain, but a little research will show you that it is not gluten-free (though it is in many products labeled “wheat-free” so beware.) Some times a quick Google-search on your phone while standing in the grocery aisle will do the trick, leading to a trusted website with the information that you need. Other times the information appears scattered and misleading. That is when it pays to go directly to the source.

The manufacturers are quickly learning the power of the allergic/intolerant consumer. Shoppers with celiac disease benefit from the Food Allergen Labeling and Consumer Protection Act of 2004 because wheat must be declared in all packaged foods. We must still check for barley (most commonly found as barley malt) and rye. Many manufacturers are now listing allergen information (referred to as “allergen” information because the general public is more afraid of an “allergy” than an “autoimmune reaction”) on their websites. Check company websites for gluten-free product lists, ingredient lists, and sometimes even product availability information.

Fast food restaurants are also putting allergen information on their websites. McDonalds, Wendy’s, Burger King, Arby’s, and others, are listing ingredient information on the company website. This information source is much more credible and reliable than “celiac223” on such-and-such website who says she never gets sick when she eats something from her favorite fast food joint. Remember to be smart about the information and keep things like cross contamination in mind.

Finally, information shared in support group meetings should also be taken with a grain of salt. There are countless examples of people who have half-true information, or misunderstood a recent change in the gluten-free community (ie. blue cheese) and they tell everyone about it. Ask them where they got the information and then look it up later. There is no need to be rude about it, but it is important to stop dangerous information in its tracks. “No, Sally, I’m sorry, but a slice of birthday cake isn’t something I indulge in, no matter how good it looks. It isn’t safe for us to eat gluten.” And then you let Sally go on her merry way.

The bottom line is to be your own advocate. Research information on credible websites. Call the company. Ask questions. Trust your gut.

Article Written by:

Kyle Eslick is the founder of Gluten Free Media, as well as the creator of the popular Celiac Support Groups page. Connect with us on Facebook, Twitter, and now Google+!


  1. Tiffany Janes says:

    This is an outstanding article Tiffany! Not that I’m surprised since I followed your work on another website. The first support group meeting I went to garnered me two incorrect facts. One of them being that we could not have distilled vinegar even though that had been cleared up long before that meeting.

    At another meeting in 2008, Dr. Fasano mentioned that 98% of people with celiac have no problem with certified gluten-free oats. One woman was shocked and said she’d been told that even the 100% gluten-free oats were not safe for any of us. I started eating safe oats six months into my diet and I can’t imagine not being able to have them!

    Welcome to to this site – we are very excited to have you here!

  2. Thanks Tiffany for reminding people to seek expert advice and go directly to the manufacturers when checking out gluten-free diet and ingredient information. As a registered dietitian specializing in celiac diease and the gluten-free diet , my goal is to provide accurate, scientific and evidence-based information that consumers, health professionals and the media can trust. There is so much misinformation floating around on the internet and from other sources, so that is why I wrote Gluten-Free Diet: A Comprehensive Resource Guide.

    Look forward to reading more of your posts.

  3. Thank for this article. I routinely end up being the voice of reason for patients and support group members simply because I stay up on the current research about celiac disease. Medscape is an amazing source of some information. It helped me clear up a “is red wine clarified (fined) using wheat” question just last week. Thank goodness for excellent sources. By the way, red wine fining is not creating a gluten contamination in our beverage. So feel free to imbibe a bit without that worry.


  1. […] flowing in the gluten-free community. I highly recommend reading a GREAT article titled “The Gluten-Free Rumor Mill” by Tiffany Jakubowski (make note of when Tiffany talks about similar products by the same […]

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