Why is there so much confusion over what is and is not gluten-free? The internet is a wonderful thing in many ways. It allows people to connect with others around the world, and learn about pretty much anything that they are interested in. The problem is that it’s fairly difficult to separate fact from fiction in cyberspace – especially when it comes to the gluten-free diet.
Let’s say that someone posted an “unsafe foods” list on a celiac website or blog ten years ago. It will likely list alcohol made from gluten grains and distilled vinegar as containing gluten. Ten years ago the proof that the distillation process rendered said items gluten-free did not exist. Remember to check the gluten-free status of flavored alcohols as some might contain gluten. Forget about the fact that based on the ten-year-old list one would conclude they need to drink potato or corn vodka. What about the fact that they’d also avoid mustard, mayo, ketchup, most salad dressings, or even pickles? They all contain vinegar which was once thought to contain gluten as well.
Some people choose not to consume products distilled from gluten grains. That is their choice and their right, of course. McCormick’s vanilla is distilled from gluten grains and they now mark the product gluten-free. Benefiber is made with wheat starch and is also labeled gluten-free. That is because these products have been tested and proven to be gluten-free. Gluten-free Living did an in-depth article about wheat starch that was fascinating. Facts are facts and myths are myths that will seemingly never die.
Hence the problem with the internet as it pertains to gluten-free information. It’s not a problem if fad dieters think they can not eat ketchup. Most trend followers flirting with our diet will give up on it quickly enough, assuming they don’t feel better eating gluten-free. But it is an issue when people who must remain gluten-free for health reasons run across a lot of inaccurate information online. Remember, the average U.S. doctor tells their celiac patients to go online to learn about their new diet.
At Celiac-Disease.com, we are committed to sharing the most current and accurate information we can find with our readers. Keeping up with the latest celiac and gluten-free news and how it affects our community is no small feat. We will not knowingly spread “celiac myths” on this website. This is easier said than done since there are hundreds of them out there floating in cyberspace. However, we will continue to strive to help our readers learn and understand the most current – and accurate – information available.
The fact that the gluten-free diet is being perceived as a fad diet more and more every day is not helping the matter. There is also a lot of “gluten-free backlash” popping up everywhere you turn. Martha Stewart’s daughter complained well over a year that she was tired of hearing about gluten-free menus at restaurants in NYC. I think her Sirius satellite radio show website crashed over that comment. The recent Slate.com article didn’t help matters much. The fact is that the dietary needs of the allergen community are changing the market place and most people don’t like change.
Recently, Dr. Cynthia Rudert spoke to the Atlanta Metro Celiacs group and commented about the dining card in the back of the book “G Free Diet” by Elisabeth Hasselbeck. The good doctor noted that the card was great for people with the same intolerances as the author, but not someone who just needs to avoid gluten. In case you are not aware of the controversy surrounding this book, please read WebMD’s review of it here.
So, in addition to celiac myths splashed on untold websites, even a new book contains inaccurate information. And so our work gets harder instead of easier, yet we are up to the challenge and will continue to report the most factual information available to date on this website. We so appreciate the trust you – our readers – have placed in us to do so.
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Figuring out what is gluten-free can be very confusing. Considering all that is written on the web about any particular item, I find it can be difficult to differentiate what is based on fact, what is simply anecdotal, and what is speculation. Sometimes the authors of any particular piece of information do not have a proper understanding of the reliabity of what they’re saying. I’ve occasionally wished there was a good central gluten-free wiki somewhere, with sourced information and proper moderation to keep it usably accurate.
I totally agree with you. However, we are really trying to create such a site right here on Celiac-Disease.com. I used to write for a site that was interested in quantity of content, instead of quality. At least that is my opinion about the site. Some of the people writing about gluten-free there were – and are – wonderful! But some were not so great and repeated outdated incorrect information. It got so bad that I could not afford to be associated with the site anymore. I know Dr. Cynthia Rudert, Shelley Case (www.glutenfreediet.ca) and several other highly respected leaders in the gluten-free community. When I have a question I don’t know the answer to, I ask an expert – period.
Fact checking takes a LOT of work and many people can’t be bothered to do it. They simply don’t have the time. I’m tired of seeing so much bad info online (or in new badly written celebrity books) about what is and isn’t gluten-free that I take the time to get things right before putting info into cyberspace. I’m trying to be part of the solution instead of the problem. If anyone ever catches a mistake I’ve made here, I’d really appreciate them letting me know. Like all humans I can and do make mistakes. But I do my best not to, when it comes to gluten-free information.
Looking more closely at this site, I can see that this is what this site is striving to do in various ways. There is so much people want to know about. It can be hard to keep track of it in one place. On the other hand, the more info kept in one place means more that needs to be kept up-to-date by the authors/moderators. User-contributed content in a wiki can help, but it is a double-edged sword, because of the reliability issue.
I agree fact-checking can be time-consuming and it’s not always easy to do. I just think of the issue of whether it is OK for celiacs to lick envelopes. I read that none of the U.S. envelope manufacturers use gluten, which would seem to settle the issue. However, just from that, there is (1) Who are the manufacturers, and exactly what do they claim? (2) Are there small regional manufacturers who might use gluten? (2) Are all envelopes sold in the U.S. made in the U.S? (3) In general, might some envelope glue have gluten, or would it never be used in the process? (4) Even if some envelope glue has gluten, would all/most/few/no celiacs be affected by it, since it is not being ingested? (5) I am in Canada. Does the U.S. based answer to this question apply to Canada as well? (6) When was the information gathered – how likely is it to change over time? (7)…
Geoffrey,
You are absolutely correct! The problem, as I see it at least, is that Celiac is something that doctors don’t tend to know a lot about. Some are trained in how to indentify and diagnose it, but that is the extent of their training. That leaves it up to the Celiac community to use the internet to create a way to explore ideas, compare symptoms, help each other find products and friendly restaurant menus, etc.
For a website to be purely facts based, it would need to staff 1 or more doctors to monitor everything. As you can imagine, few websites are going to generate enough money to do something like this. I believe even Celiac.com simply “consults” a doctor for their newsletter, but not for all their other content.
Like Tiffany mentioned above, if you ever find anything that isn’t accurate on this site please let one of us know so we can update it. Our ultimate goal is to provide useful and accurate information!
Geoffrey F – you bring up a very good question – or questions. When I was diagnosed with celiac over three years ago, I read the warning about gluten in envelope glue. Since I always used a little water bottle with sponge tip for envelopes, this did not affect me. But then I bought Danna Korn’s book (which I’ll be reviewing here soon) and she mentioned that there is no evidence that there is gluten in glue. Danna is not a doctor but I know her and she does her homework. I started digging and could not find one person to show me where the evidence was, that showed that gluten was or was not in envelopes. Someone writing something on a blog without references is not proof for me. The evidence points to the gluten in glue issue being a celiac myth – at least for products sold in the U.S. – at least presently. You might want to check out http://www.celiac.ca for info in Canada. To answer thw question about information changing over time, that is probably the most frustrating thing for us all. Things do change – ingredients change – manufacturing practices change – and this does not make life easy in terms of what is – and is not – gluten-free. Sorry not to have better news there.