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.

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  • It’s not easy to say the unpopular, but I am glad you did, Amy. Credibility is at the heart of what we do at http://www.theceliacscene.com. We connect celiacs looking for safe, delicious places to dine with restaurants who have proven to other celiacs that they can meet our needs.

    With an influx of diners dabbling in the diet, will they take requests for gluten-free meals seriously? A gluten-free fad may very well undo the respect that celiacs have worked so hard to establish.

    Leave the gluten-free diet where it belongs – as the medicine we must have. Please don’t use it as a gimmick.

  • I’d just like to say that it’s not possible for everyone to get diagnosed. I live in the UK and the amount of total disinterest the doctors had in me was staggering. They thought I was being fussy or maybe just attention seeking. They and the dermatologist misdignosed my DH rash as chronic hives, and told me I was allergic to something and to go away and figure it out. After a year of various elminiation diets and avoiding anything with enumbers that hasn’t been made at home, and finally knowing it is gluten, it’s just not possible to eat enough gluten to get the positive blood test today. Even the small portions of gluten I did consume prior to the test a few times a week left me so ill I had to take days off work. I would like to have had the test a year ago when I was eating normally, but that’s not how it worked out. As it stands I do not get gluten free foods on prescription (discounted) as I should, so the foods are more costly.

    What we need is better informed doctors, and for more people to consider when they’re getting ill and tired all the time ‘hey, maybe I should get tested for that coeliac thing’. The book might contribute in that respect.

  • Wow! Thanks for explaining what is going on. I did not understand why hardly anyone was coming out with concerns about this book. Thank you for being honest and telling it like it is!

    http://www.examiner.com/examiner/x-11318-Atlanta-GlutenFree-Food-Examiner~y2009m6d8-The-GFree-Diet-book-review

  • Amy

    The comments posted so far raise important issues about the need for continued spread of correct information about celiac disease. Ellen, I can see how dining out could be harder if restaurants started to wonder about the real need for gluten-free items. Encouraging dabbling isn’t good for anyone.
    And Ionised Girl I hear what you are saying. It’s clear you didn’t start the diet lightly and would rather have had the proper testing. I agree we need doctors everywhere to be more willing to test for celiac disease and DH. As hard as it is, patients have to keep pushing until some doctor is willing to listen. In the US doctors are better informed than they used to be, though there is still a long way to go.
    Everyone would have benfited if you had had an official diagnosis. You would be able to get the prescription and savings you are entitled to, your doctor might be more willing to test the next person who comes in with similar symptoms, and this cycle of people not being able to get the proper testing might be broken.
    I think the mixed message in the book about self diagnosis is a big problem. But I hope some readers will do what you say and get tested.

  • I was going to buy the book but now I think I will pass. It is hard enough dealing with the GF diet in addition to my migraines, gastritis and anxiety. I don’t need to be further confused.

  • As the mom of child with celiac disease, who each day is faced with the question of whether to correct errors about celiac disease or not, this was both refreshing and validating.

    The myths of vinegar still permeate the celiac community, as do many other myths. I just returned from a national celiac conference and again, was shocked at hearing comments from self-diagnosed individuals, or those giving testament that the stool test is a recognized method of testing for this genetic condition (it is NOT).

    Your comments have validated what I have said to others. Thank you for putting this into perspective and for saying so much more eloquently.

  • being self diagnosed doesn’t always mean having less information that through a doctor. I had to explain to mine that gluten was in soy sauce, and that wheat wasn’t the only source. I know that makes him sound really bad, but he’s not the worst I’ve seen this year by a long shot.

    He’s since gone and consulted with some other people more experienced in this is the good news, but if I’d relied on my (various) doctors guidance initially, I’d be in a real sorry state. Different people have different experiences with their doctors. Even my dad hears conflicting advice on whether to avoid seafood for his cholesterol or not, depending on which doctor he talks to.

  • I really like what Ionised Girl has to say about this: “I’d just like to say that it’s not possible for everyone to get diagnosed.” I am living in France and don’t have the paperwork/status necessary to receive non-emergency medical care. When I had a health crisis this past March, a friend of mine who had been researching Celiac and eating gluten-free with greatly improved health with her own symptoms recognized the “flags” I was telling her about and suggested I go g-free. I researched a bit more on my own and started a very strict elimination diet and in 12 weeks of working with it so far, have discovered that it looks like the root cause of my symptoms are gluten. So where it stands now is that I will never be able to have the blood antibody tests as I will test negative for Celiac. If I ever do get access to healthcare again, I may see if there are other means of confirmation for me to become “official.” I have to say, though, I certainly am not going to keep eating something that clearly causes me harm just to get the label “Celiac.” That’s too high a personal price to pay for someone else’s benefit.

    So while I understand the need to have a backing of data, confirmed cases, and accurate information “out there” to spread awareness and diagnosis, I think what is more important is for people to experience greater health and wellness! If they have to do this on their own because of a lack of care for whatever reason (uninformed doctors, no access to healthcare, etc.) then so be it. I agree with this: “What we need is better informed doctors, and for more people to consider when they’re getting ill and tired all the time ‘hey, maybe I should get tested for that coeliac thing’. The book might contribute in that respect.”