Gluten-free news from Gluten-Free Living magazine

A study getting some recent online attention reports that when people are newly diagnosed the first place they go for information is the Internet. This doesn't surprise us at Gluten-Free Living.

We have been active online for a number of years, offering information on our website, blog, Twitter and Face book page, especially with the newly diagnosed in mind. It's not unusual for someone seeking information of any kind to do their initial searching on the Internet.

But we do think it's a little premature to use the study to declare that those who follow the gluten-free diet rely only on online information. And when we read the study for ourselves, we did not find evidence to support one blogger's declaration that "people are no longer subscribing to magazines because they can get pertinent information more quickly on Twitter."

In fact our own growing circulation and distribution -- up 130 percent -- would refute that claim, which was based on only one comment in the study.

The study was done by Mitch McKenney, an assistant professor of journalism and mass communications at Kent State University-Stark, for the Civic and Civilian Journalism Interest Group. He interviewed 24 people who maintain gluten-free websites or blogs to find out about their "civilian journalism" activities. One blogger posted his questions on her site, which generated another four responses. McKenney says that "to round out the reporting," the contents of sites mentioned by others in the reporting process were examined and included. Personally, I question the real value of a study that relies on a group with a vested interest in a particular outcome.

Since Gluten-Free Living is in the fairly rare position of both producing a gluten-free magazine and being active in the online gluten-free community, we can see the strengths of each.

Online you have speed.

You can ask a question and get an answer almost as fast as you can type it. (This is true about everything, not just the gluten-free diet.) But even the Internet writers in the study said they have some reservations about the accuracy of some information shared online. We know about this uncertainty because we regularly get letters and emails that start something like, "I just read on the Internet ....Can you tell me if this is true?"

In addition to speed, we love being in constant contact with our Twitter followers and Face book fans. We thoroughly enjoy being able to "talk" regularly on our blog and share ideas and experiences that might not make it into the magazine. And we hold all of our Internet sites to the same standard of accuracy as the magazine.

But in print, you have both accuracy and depth.

In each issue, Gluten-Free Living offers 62 pages, cover to cover, of well-researched information and advertisements completely about the gluten-free diet and lifestyle. We have nearly 20 years of experience looking into gluten-free topics and our reputation is well established. We have always advocated a common sense approach to the diet based on fact and not unfounded fear.

Our readers tell us they save issues of the magazine and go back to refer to them again and again. And they pull them out when someone else has a question about ingredients, labeling, nutrition, dining out, going to school - well you get the drift.

One part of the study in particular caught our attention and has some valuable lessons to teach, even if unwittingly. A support group blogger recalls how accurate information was hard to come by when she was first diagnosed 10 years ago, saying that there were rules that don’t apply today. “We were told to avoid all items that had vinegar,” she said, while it’s known today that most items with distilled vinegar are fine.

The study's author, who did not include specialty gluten-free magazines in his research or any of his questions, probably did not realize that Gluten-Free Living is responsible for the information on vinegar. Most newer bloggers also probably don't.

But we looked into this question a number of years ago when all the dietetic, support, and medical groups said distilled vinegar was not safe. Slowly all of them came to accept our reporting and research on the fact that distilled vinegar is gluten free.

Without the kind of work a gluten-free magazine can do -- and not simply "retweeting" -- we would all still be worrying about distilled vinegar in salad dressing and marinades, not to mention distilled alcohol which is gluten free for the same reason as distilled vinegar.

And in the magazine we continue to use our expertise to follow other gluten-free developments. We have extensively covered labeling, from the very first mention of new laws governing it through work on a definition of "gluten free." We were among the first to look into the controversy over McDonald's french fries and gluten. The topics we cover are often complex and some answers might not come as quickly as a blog that just repeats what is found in a study. But we are hard at work looking for the facts that can have a big impact on your gluten-free life.

We see Gluten-Free Living and the world of blogs, Twitter and Face book existing all at once. Each one can provide those in the gluten-free community with different kinds of important information.

Although we have recipes in each issue, we enjoy many of the cooking, baking, you-name-it sites that provide readers with information, instruction and inspiration in the kitchen.

We know that reading a personal story of diagnosis and return to good health can be comforting for someone who is newly struggling with the gluten-free diet. Many of these stories are available online. Although we advocate learning how to read a label yourself, when you are new to the gluten-free diet, you might want lists of specific brands of products that are safe and these can be found on the Internet. Other sites chronicle every study related to celiac disease or give details about gluten-free dining and shopping opportunities in individual cities. And some provide very specific advice for those who have other allergies or intolerances in addition to celiac disease. Many give their opinion on products sent to them by gluten-free companies.

We read numerous online sites as part of the process of keeping tabs on gluten-free concerns. We like many of them. And we count ourselves as part of the online community that can help anyone with celiac disease, gluten intolerance or gluten sensitivity live a happy, healthy gluten-free life.

But we know there is still a lot of room, and more important, a real need for Gluten-Free Living, the magazine.

Amy Ratner

Gluten free - getting it right

In the new summer issue of Gluten-Free Living, I review Elisabeth Hasselbeck's book, The G Free Diet.
I won't repeat what I say in the review here, but I wanted to comment on some of the things I've been reading about it on other blogs.
Some bloggers write that we should overlook inaccuracies in the book because it will still bring lots of attention to the celiac disease and the gluten-free diet.
Others say despite mistakes, it's a decent beginners' guide to the gluten-free diet.
At Gluten-Free Living, we have the advantage of the long view of celiac disease and eating gluten free. We've been publishing for 13 years. My daughter was diagnosed nearly 17 years ago and editor/publisher Ann Whelan at about the same time.
So we know the damage done by inaccuracies, big and small. From the beginning, our goal has been to give people the best information so they can live a happy, health gluten-free life.
By that we mean a life unfettered by needless worry over ingredients and foods that are questioned for no reason. Or those that have so little potential to contain gluten that finding even one example would be as rare as getting criticism of an American idol contestant from Paula Abdul.
And we've found lots of example of needless worry over the years -vinegar, maltodextrin, citric acid, glucose syrup - to name a few. When Gluten-Free Living was started, all of these were on lists of ingredients that you had to stay away from or question. Now, we know all are safe (Malt vinegar is an exception). Some got crossed off the list because of research we did at Gluten-Free Living. Others, like caramel color and modified food starch, were clarified by the allergen labeling law that requires wheat to be labeled when it is used in most foods. We now know that wheat is rarely used in either ingredient.
To me, accurate information is essential for my daughter and everyone like her to be healthy and gluten free.
So every time someone, especially someone new to the gluten-free diet, gets bad information that makes the diet more difficult to follow, a minor mistake grows into something larger and more limiting.
Is it a big deal to incorrectly tell someone struggling to figure out the gluten-free diet for the first time that the declumping agents in spices almost always contain wheat, that you have to worry about additives in modified food starch, that you should stay away from all marinades?
I think of all the ways this makes living gluten-free much more difficult. My answer is yes, it is a big deal.
Why all the fuss about calling celiac disease an allergy when we are getting all this free publicity from Hasselbeck?
Because celiac disease is not an allergy and it does not really help spread the word when we confuse waiters, chefs and food makers by using the wrong explanation. More than 15 years ago when Amanda was diagnosed, hardly anyone had heard of celiac disease. When we used the words in a restaurant or when talking to a teacher or the parent of child who had invited Amanda to a birthday party, the response was usually a blank stare. Now, because so many people have painstakingly spread awareness and because so many more have been diagnosed, the reaction is more likely to be, "Oh, my friend just found out he has celiac disease."
Why turn the clock back to a time when you sometimes needed the crutch of saying it's an allergy? Plus, it's one thing to use "allergy" on a small, personal scale. It's another to declare that's what celiac disease is in front of millions of television viewers you are lucky enough to reach because of you are a television celebrity.
Finally, what's the big deal about diagnosing yourself with celiac disease and going on the gluten-free diet without benefit of the much improved testing and diagnostic tools available today? Some bloggers say there are cases where this might work.
For one, as long as you don't have a real diagnosis of celiac disease, you can't be added to the official number of those in the US who have it. If you can't be counted, the celiac community as a whole loses a little bit of clout in lobbying for improved labeling on foods and drugs, more money for research that might one day result in a cure, more access to gluten-free food in schools, colleges, hospitals and nursing homes. And when food makers start tallying up the people who are surely going to stick with the gluten-free diet and buy gluten-free products for life, they might not count you either.
Celebrity and publicity are the popular kids in today's culture. It makes sense to use them whenever we can to create a better life for anyone living the gluten-free lifestyle. But this isn't high school and they don't get a free pass. Accuracy matters too.


Amy