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.