Right now, food companies in the United States can label their products gluten-free if they have 100 parts per million gluten, according to The Boston Globe.  At this level it can cause intestinal discomfort and issues in some of us living with celiac disease.

    The FDA this week invited consumers, celiac experts, and the industry to make comments on a rule that it had initially proposed back in 2007. (To comment, see instructions below) After the comment period closes on October 3, 2011 the FDA will issue a final rule later this year for the industry to follow that will probably go into effect in 2012.

    The FDA is proposing a new standard that manufacturers will be required to meet before they can slap on the gluten-free label. Federal officials are proposing that cookies, bread, and other wheat products making this claim can contain no more that 20 parts per million of gluten, a level below which gluten can’t be detected by standard lab tests.  

If you want to see 20 ppm or less as the new standard, let them know. I did it, you can too!

Here’s how to do it. Go to www.regulations.gov 

1. Choose “Submit a Comment” from the top task bar
2. Enter the docket number FDA-2005-N-0404 in the “Keyword” space
3. Select “Search”

 To submit your comments to the docket by mail, use the following address:

 The Division of Dockets Management
HFA-305
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852
Include docket number FDA-2005-N-0404 on each page of your written comments.

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Good news for all of us that live with Celiac disease!

A new gluten-free certification label has been created to help US consumers sift through the sea of unsubstantiated claims and logos. Quality Assurance International and the National Foundation for Celiac Awareness announced the new label last week, which acts as a rigorous, science-based stamp of approval for gluten-free foods, the groups said.

The logo is identifiable as a black and white circle with a checkmark in the middle, and reads, “This product is certified gluten-free”. In addition to stringent product reviews, to qualify for a seal manufacturers will be required to undergo onsite inspections, testing to ensure compliance of 10 parts per million (ppm) or less, and compliance that includes random product testing.

In the European Union, in order to carry the words “gluten-free,” products must have less than 20 ppm, and to be deemed ‘very low gluten,’ 100 ppm. Australia has the most stringent gluten-free regulation, at five ppm and products are indicated as such by the words “gluten-free”. Quality Assurance International is the same group behind the green and white USDA Organic seal and with its parent company, NSF International has been auditing and certifying foods for 66 years.

Lets hope that all US product manufacturers climb on board and get this new logo on their gluten-free products ASAP.

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The notion of going gluten-free in the absence of celiac disease is controversial. I posted a letter to the New York Times editor on our Facebook page last week, and it stimulated a number of passionate responses (I love passionate fans!).

On the one hand, there seems to be a growing number of people who have tested negative for celiac disease, but have experienced amazing health benefits by going gluten free. I am constantly hearing from people, including two of my own family members, who have tested negative for celiac disease, but swear by the gluten-free diet. Although it hasn’t been well studied, gluten intolerance is a valid phenomenon that occurs when a person tests negative for celiac disease but experiences a variety of negative symptoms after eating gluten. To me, the solution seems quite straightforward. We live in a free country where there are a lot of food options and a lot of wonderful nutrition advice. So, naysayers be damned: If eating gluten-free makes you feel better, why the heck wouldn’t you do it?

On the other hand, there are people who regard the gluten-free diet as a fad weight-loss mechanism. Recently, the Glamour Magazine online blog posted a reflection on the gluten-free fad, and many of their readers left comments about starting the gluten-free diet in order to lose weight and feel good. Stars like Gwyneth Paltrow have popularized the gluten-free diet in the absence of a medical diagnosis, and a lot of people have jumped on the bandwagon. This has had some good and some bad effects.

First, the good: companies small and large have perceived the increased demand for gluten free products, and they have responded! We now have gluten-free Chex, Betty Crocker mixes, and Yoplait yogurt thanks, in part, to the fact that so many people are going gluten-free. While these products may not be organic or uber-healthy, it is nice to see some mainstream options that we can depend on finding just about anywhere. The gluten-free section in my local supermarket has dramatically increased in size. What used to be one small shelf is now an entire aisle! My local food co-op puts special labels on everything in the store that’s gluten free. In addition, the people in my life hear about the gluten-free diet more frequently, and they say things like, “Hey, Crystal, did you know that Starbucks now has gluten-free chips?”  (Thanks for the tip, Laura! The sweet potato variety is delicious.) In my view, this is all very positive and directly attributable to all the buzz surrounding the gluten-free diet. Even the Elisabeth Hasselbeck book drama served to increase gluten-free awareness, but more on that elsewhere…

Now, the bad: the gluten-free fad has led some people, including doctors and chefs, to take celiac disease less seriously. I have spoken to restaurant chefs that believe that the gluten-free diet just isn’t a “big deal.” The fad followers order gluten-free salad, but want a little of the glutenous salad dressing on the side (come on, it just tastes better!). When this happens time and again, the kitchen and wait staff begin to think that a little gluten is ok. I once had a waiter bring me a salad with a big hunk of Italian bread sitting right on top. When I reminded him that I needed a gluten-free salad, he quickly scooped up the bread and put it in his pocket. Then, I had the opportunity to educate the waiter on what gluten-free really means. (No crumbs, please!) But seriously, this is a very real problem. An archived newsletter from the National Foundation for Celiac Awareness describes an incident where a woman went to her physician complaining of celiac symptoms, and her physician refused to do the test and told her that the gluten-free diet was nothing more than a fad. Luckily, the patient had done her research and convinced the doctor to do the test, but the research shows that the majority of people with cealic disease have never been tested.

Taken together, these findings leave me feeling ambivalent. The gluten-free fad has affected those of us with celiac disease, but it hasn’t been all good or all bad. I can’t even argue that the bad (people taking us less seriously) outweighs the good (increased awareness, more gluten-free options, and increased detection).

However, I can say one thing for certain: if following a gluten-free diet makes you feel good, then welcome to our blog! I’m glad you’re here.

Photo credit: Whatsername?

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When I was diagnosed with Celiac Disease, there were plenty of books and websites that talked about eating gluten free, but I had trouble finding resources that showed me how to implement the changes in my life. Even today, no one really shows you how to create a system that automatically protects you from getting gluten and allows you to enjoy life without worrying.

So Drew and I decided to do something about this.

We’ve been using a system like this in our own lives, and we call it the Celiac System. Basically, it’s an effortless way to handle every situation that arises: dinner parties and family gatherings, replacing the dietary nutrients we used to get from whole grains, and strengthening my immune system that was so weakened by celiac disease.

And I’m so excited, because today, for the first time, we’re able to share our system with you! We’ve put together a free e-course at CeliacSystem.com that will show you how our system works.

In the e-course, you’ll get a new lesson in your inbox every couple of days that will help you discover the seven simple secrets to getting the most out of your gluten free life.

Oh, and don’t make the mistake of thinking that this information is only for those who are new to the gluten-free diet. We’re packing tons of information into this course, and I promise that there is something for everyone!

Drew and I have been working hard on this, and we’d love your feedback. And be sure to share this free course with your gluten-free friends!

Get your free e-course now at CeliacSystem.com!

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Celiac disease requires more than a gluten-free diet, it requires a gluten-free lifestyle. In an effort to cultivate a gluten-free lifestyle that is both happy and healthy, I do a lot of reading. Blogs, websites, books, podcasts, and videos provide tons of tips and ideas, but there are only a few to which I return time and again. Here are three of my favorite online resources to which I continually return for quality information:

The Gluten Doctors

Written by Dr. Vikki Petersen, founder of HealthNOW Medical Center and author of “The Gluten Effect,” The Gluten Doctors is both witty and informative. Petersen provides a wealth of medical information about celiac disease. She answers questions like: What is gluten?  What should I eat if I have celiac disease? Her most recent post discusses the link between depression and celiac disease. This blog has terrific information about everything from gluten-free nutrition to the latest research on celiac disease. I read it every week.

Organic Jar

Organic Jar is a Mecca for all things healthy and organic. Whether he’s exposing unsavory cropdusting practices in the Midwest or finding the best tearoom in San Francisco, our friend Jason Cairns gets to the bottom of what’s really good for you. I was inspired by his article about the preparation and nutritional value of quinoa, which is a delicious gluten-free grain that Drew and I now eat all the time. Jason also recently posted an article about reading food labels, which as you know, can be quite tricky for those of us with celiac disease. I have also learned a lot about superfoods, raw foods, nutrition, and the benefits of going organic by reading this blog.

The University of Chicago Celiac Disease Center Website

The Celiac Disease Center provides tons of great information about the gluten-free diet. Topics include healing the gut, ingredients to avoid, safe (gluten-free) ingredients, and creating a safe cooking environment. I use their list of ingredients to avoid to reference ingredient lists of foods from the grocery store. They also list many other resources and provide avenues for advocacy (e.g., how to approach your child’s school about gluten-free lunches). I highly recommend exploring this site.

So now that you’ve read about three of our favorite celiac resources, what are your favorites?

Photo credit: lady_lbrty

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I travelled to Minneapolis over the weekend to present some of my research on depression and anxiety at a conference. While there, I had an opportunity to eat at some fantastic restaurants that offer gluten-free menu options (Fogo de Chão rocks!). I also had a chance to hangout with my best friend from college and her 11-month-old baby. I don’t have a baby, so I have to admit that I had never really thought about all of the ways in which celiac disease could affect the mother-infant relationship. My friend tasted most things that she fed the baby, and she always checked the temperature of warm foods and drinks. Most of what the baby ate ended up all over his face, hands and clothes, which inevitably touched his mom’s face and mouth by the end of the meal.

Beyond the food issues inherent in the mother-infant relationship, cosmetics and self-care products are an important consideration. The baby’s hands were constantly in his mouth, his mom’s mouth, touching her face, and my face.  Many kisses were exchanged.

If your baby has celiac disease, all of his or her activities must be taken into account. Does she suck her thumb? Do you kiss her while wearing lipstick or lip balm? Do you put lotion on her? Does she put her hands in her mouth when eating? If so, then you may want to make sure that your lipstick and lip balm are gluten free so that you can exchange worry-free kisses. You may also want to consider the baby lotion, oil, and shampoo that you use.

If you have celiac disease, the considerations are similar. Do you kiss the baby’s skin or hair? Do you wash your hands after applying the baby’s lotion or oil and after giving her a bath? Does the child wear lip balm or facial moisturizer? You may want to make sure that the baby’s products are gluten free so that you don’t have to worry about avoiding kissing her skin or washing your hands after applying her lotion.

This approach may sound overzealous to some, but many others, including celiac specialists, nutritionists, and physicians, seem to agree:

“Make sure everything you use is gluten free; for example, shampoos, hand soaps, makeup and hand lotions.” Erik Spersrud & Jennifer Spersrud (2008) in Everything You Want to Know about Recipes Restaurants and Much More…

“Anything that can be ingested may be a potential source of gluten. This includes not only medications and dietary supplements but also toothpaste, mouthwash, lipstick, and postage stamps… Until more is know about the minimum safe exposure threshold of gluten, the patient should be advised to be as strict as possible.” – See & Murray (2008) in Nutrition in Clinical Practice

“These non-foods may also be gluten sources: lip stick and lip balm, sunscreen… soaps and shampoos, toothpaste and mouthwash, cosmetics, lotions, creams…” – Baurman & Friedlander (2008)

“The make-up that matters most is make-up you’re likely to get in your mouth (or someone else’s), like lipstick, lip gloss, lip balm, and anything else that goes on or near your lips…. Sometimes lotion from your hands or arms can get on the food you’re eating or preparing, and that can cause a problem.” Dana Korn in Living Gluten Free for Dummies (p. 74-75).

Finding out which cosmetics and self care-products are gluten free can be difficult and time-consuming, so we have done the legwork for you. Our Gluten Free Cosmetics List makes going gluten-free easy and includes over 550 gluten-free products from 25 companies in 35 categories and includes baby products, men’s products, lipsticks, lip balms, and lotions, and we’re constantly adding more.

Photo credit: charlottemorrall

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Today I’m excited to announce the new, expanded version of our Gluten Free Cosmetics List. The list contains more than 500 cosmetics and self-care products from 24 companies (and we’re always adding more!). Most of the companies represented on the list are mainstream, and their products are available at most pharmacies and department stores.

Watch this quick video we made about why you need to use gluten-free cosmetics:

(If you’re reading this via email or RSS feed, you may have to click through to our website to see the video.)

Everything on the list has been confirmed gluten-free within the last six months by speaking with customer service representatives from each company. Moreover, everything on the list will continue to be verified every six months, so that all of the information is up to date.

I am so happy to be a part of making this list available to the public. In the beginning, I really struggled trying to figure out which products were safe for me to use. I think that this will make maintaining a gluten-free lifestyle easier for a lot of people, and I hope that it will be as helpful to you as it has been to me.

Subscribe to our Gluten Free Cosmetics List today!

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The other day an old friend of mine emailed me asking me about the benefits of eating gluten free. He knows that I don’t have celiac disease, yet I keep talking about the gluten-free diet! Here’s my response:

Dear [Friend],

Great question! Crystal (my wife) has celiac disease, which is an autoimmune disorder that causes her immune system to attack her intestines when she eats gluten. The gluten proteins that affect her can be found in wheat, barley and rye; so most flours, breads, pastas, beer, etc. are out of her diet (oats are often contaminated as well). The symptoms of celiac disease are often extremely painful stomach cramps and digestive problems, and the only known treatment is maintain a diet that is completely free of gluten.

The best way to stay true to the gluten-free diet is to eat fresh fruits, vegetables and meats and to prepare most of your own meals.

Because the gluten-free diet dictates that you stay away from many fatty, fried, and pre-packaged foods, it has caught on in Hollywood and with the media as a fad diet. The fallacy of this fad diet is that I can eat just as unhealthy on a gluten-free diet as I can on a diet full of gluten — I can have beer brewed from sorghum, pizza made with a gluten-free crust (made with rice, potato, tapioca flours, or even cheese-based crusts), burgers (using gluten-free buns or lettuce buns), chicken fried in gluten-free batter, gluten-free cookies and pastries, etc.

The other challenge with the gluten-free diet fad is that it can discount the seriousness of celiac disease. Since people who don’t have the disease don’t show ill-effects when they consume gluten, some restaurants and food preparers don’t take the diet as seriously as they should. People with celiac disease are as sensitive to gluten as people with a peanut allergy are to peanuts, and there are many hidden sources of gluten that people don’t consider (unlike a peanut allergy, consuming gluten is not immediately life-threatening and the effects of consuming gluten are not felt immediately because the food doesn’t cause pain until it hits the intestines).

Hidden sources of gluten include some soy sauces (the caramel color is sometimes derived from wheat), some salad dressings, some white vinegars (when distilled from wheat), “natural flavors” on ingredient labels sometimes signify wheat, MSG usually uses wheat as a stabilizer, and many more. The diet can be very difficult to adhere to, and it’s almost always a struggle when we eat at restaurants or friends’ houses to ensure that Crystal is eating a truly gluten-free meal.

The long-term effects of consuming gluten for those with celiac disease are a compromised immune system, increased risk of colon and other cancers, anemia, low energy, and other health complications due to lack of immune function and/or nutrient absorption.

You may also be interested to know that untreated celiac disease in children has been linked to anemia, underdevelopment, and even autistic symptoms.

The benefits of living on a gluten-free diet for me are pretty evident. While I still have the occasional pizza and beer away from home, I primarily eat food that is fresh, nutritious, and high in natural fiber and protein. It is much easier to stay lean and feel healthy when you are eating food that you prepare from scratch yourself!

I’m not interested in convincing people to live a completely gluten-free life unless they have celiac disease, but the health benefits of cutting out processed and fatty foods are remarkable.

Anyway, I hope you enjoyed this long answer. I’m sure it’s more than you bargained for!

Best, Drew

I posted this email because my friend replied that he has had trouble finding a good explanation of the gluten-free diet and said that this information is helpful. Hopefully it is helpful for you as well!

Photo by Sbocaj

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I was surprised to discover the opinion piece, “Food Allergies are the New Eating Disorder,” published this week by the Huffington Post. The author of the article, Charlotte Hilton Andersen, reveals her past struggle with eating pathology and the ways she justified food avoidance. She goes on to state that a current trend in popular culture is to feign food allergies in order to avoid eating. She specifically identifies celiac disease as one of the allergies notoriously used to disguise disordered eating and sites the increasing prevalence of celiac disease as evidence of this claim.

The purpose of this post is to correct the misinformation about celiac disease contained within Ms. Andersen’s article, whether or not it is centrally related to the conclusions she has drawn. First, celiac disease is not a food allergy; it is an autoimmune disorder. This is an important distinction. Individuals with celiac disease do not experience anaphylactic shock the way some individuals with peanut allergies do. Instead, ingesting gluten causes an immune response, the target of which is the individual’s small intestine. The important distinction between allergies and autoimmune disorders like celiac disease is that there is no gradation of severity. No one with celiac disease can consume a little gluten and be ok. A little gluten causes the full autoimmune response.

Second, the alarming increase in the prevalence of celiac disease over the last 50 years is not a result of changing trends in methods to disguise eating pathology. The recent research on the growing rates of undiagnosed celiac disease was based on diagnostic blood tests, not self-reported allergies. The whole point of that study was that everyone was undiagnosed; no one even knew that they even had celiac disease, which means that it was not a guise for closeted eating pathology.

Third, and perhaps most important, if someone is avoiding food and provides allergies as the reason, it is usually best to take the person at their word. It is nearly impossible for a layperson to tell the difference between someone with celiac disease, an allergy, and an eating disorder. The one exception: if you are a close friend or relative of the individual, he or she has experienced extreme weight fluctuations or adverse health consequences as a result of dieting, you care about the person, and you are concerned for his or her health or well-being. Then, you may decide to express your concern and recommend that he or she discuss said allergies and diet with a physician, registered dietician, or mental health provider.

It is irresponsible to imply that everyone who claims to have food allergies should be suspected of having an eating disorder. Eating disorders are a significant mental health concern and should be addressed with compassion and understanding, not suspicion and rejection. In addition, I suspect that most people who claim to have food allergies do have genuine food allergies, and it is possible to have both celiac disease and an eating disorder.

Finally, adjusting to the gluten-free diet is hard enough without feeling like everyone suspects that you have an eating disorder. Celiac disease is a real autoimmune disorder, and it should be regarded as such.

For more information about eating disorders, please visit the Academy of Eating Disorders website.

For more information about the symptoms, diagnosis, and treatment of celiac disease, please visit our Resources page.

Photo credit: BartmanSA

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“Fighting Celiac Disease” was recently published by a news outlet in Michigan. We fight against cancer, we fight against AIDS, we fight the war on drugs, and it all seems futile to me, particularly in the case of fighting celiac disease. According to Eckhart Tolle, fighting against something, whether it’s drug trafficking, depression, another person or a country, only serves to increase our focus and attention on the very thing we don’t want, which ultimately results in frustration and misery. The widely popular book and movie The Secret is based on a similar idea. Buddhist philosophers have said the same thing for centuries, and new wave behavior therapies are advocating patients and therapists to live the life that they want instead of focusing on getting rid of the negative emotions and circumstances they don’t want.

Celiac disease is a completely manageable illness. Fighting it is totally counterproductive. We need to start focusing on what we do want, how we do want to live, and who do we want to be rather than focusing on what we don’t want and the illness that we’re “fighting.”

Accepting celiac disease as part of my life has been empowering. I am committed to the gluten-free diet for myself, my health, and my long term happiness, but it’s not always easy. Sometimes it’s incredibly difficult, and sometimes I still get sick, but I am willing to face the difficulty of maintaining a gluten-free diet in order to live a healthy life. My commitment to be gluten free means that I will do my best every day, that I accept responsibility for my diet, that I plan ahead, and that I have compassion for myself. In the beginning, I allowed myself time to mourn the loss of my favorite foods and my former lifestyle. I experienced sadness that I would never again eat my favorite pizza, but I was also committed to finding a new favorite gluten-free pizza. I still experience concern about travelling with celiac disease, but I can plan ahead and find creative new ways to travel gluten free. The gluten-free diet is a commitment, not a fight. For me, the notion of fighting celiac disease is equivalent to fighting myself. Maintaining a gluten free diet is about honoring myself and taking care of my body—it’s the only one I have.

Recommended reading:

A New Earth by Eckhart Tolle

Radical Acceptance: Embracing Your Life with the Heart of the Buddha by Tara Brach

The Wise Heart: A Guide to the Universal Teachings of Buddhist Psychology by Jack Kornfield

Photo credit: Search Engine People Blog

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