In the blink of a celiac click

Add $45 million to the lengthening list of big numbers associated with celiac disease. That’s the amount the family of a grateful patient from Indiana is donating to the University of Maryland Center for Celiac Research for the study of celiac disease and other autoimmune disorders such as multiple sclerosis and Type 1 diabetes. Alessio Fasano, MD, professor and director of the Center for Celiac Research, will be the first director of the new research enterprise.

I am astounded by the amount of the donation but not that this family has chosen Dr. Fasano to be the recipient of their generosity. He certainly deserves it.

I met Dr. Fasano nearly 20 years ago at a medical meeting shortly after I had been diagnosed with celiac disease. He was new to this country and not as fluent in English as he wanted or needed to be. His language frustration was palpable, but it didn’t last for long. While plenty of funny constructions still seep into his heavily accented English, language is absolutely no barrier in his life.

I like to say that Dr. Fasano landed on US soil, held up a celiac disease flag, and has not put it down since them. There has been success after success and we have him to thank for many of them. But it seems he’s just getting started. He is indefatigable, brilliant and an awful lot of fun to be around. My favorite Alessio slip was this comment referring to the speed with which one gets answers on the web: “It happened in the blink of a click,”

It’s easy to get lost in the challenges of leading a gluten-free life and to forget the damage autoimmune disease brings to the human race. Dr. Fasano once said, “If I had to have to have an autoimmune disease, I would want it to be celiac disease.” I couldn’t agree more. Diabetes, for example, is one of the leading causes of illness and death not only in this country but around the world. It is a constant hassle and those who cope with diabetes cannot let their guard down for one minute. I actually take some pride in thinking that study of “my” disease might bring some help to those who are challenged with diabetes.

Multiple sclerosis patients deal with many physical challenges and often with a shortened life. This simple explanation from the Mayo Clinic says it all:

“Multiple sclerosis (MS) is a potentially debilitating disease in which your body’s immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Ultimately, this may result in deterioration of the nerves themselves, a process that’s not reversible.”

I grew up in the 50s and was one of the original ardent fans of the Mickey Mouse Club. Annette Funicello was perhaps the most outstanding of the Mousekateers on the show and went on to star in several teen-oriented flicks. She was the one who usually got the guy, who was usually played by Frankie Avalon, one of my teen heartthrobs. To say I was jealous would be an understatement.

Funicello was diagnosed with multiple sclerosis in her forties. One of the sadder aspects of MS is that it tends to strike when people are relatively young. I’ve seen her on television where she sometimes appears as MS spokesperson and, like Michael J. Fox does with Parkinson’s Disease, she does not hide her symptoms. That takes courage.

My point is that other autoimmune disease, like diabetes and MS, seem to have a much more profound effect on our ability to live a happy, healthy life than does celiac disease. It might even be safe to say that CD might not receive the research attention it does now were it not for these connections.

But all this is not meant to debate which is the worst autoimmune disease on the planet. It would be great to get rid of all of them. The $45 million that the Center for Celiac Research will receive will be put to good, targeted use and those of us with celiac disease will likely be prime beneficiaries. Please join me in congratulating Dr. Fasano and in hoping this money gives him to opportunity to do great things for this planet. And, of course, it wouldn’t hurt if your congratulations come attached to a monetary donation to the CFCR Here is a link to the website In the blink of a click, you can contribute to what is certainly a noble effort.

Ann

You’re (over) Due

I have had two people recently tell me that I am over due for a blog post. I was shocked, and secretly stoked. Someone actually wanted to read more gluten-free musings from me, that was a thoroughly exciting “yeah me” moment.

I thought about what was getting in the way of my weekly post. There is a high school senior in my house who is pulling her hair out over college applications and providing me ample “I told you so” moments since I had been suggesting since July to write this essay. I’ve bit my tongue so many times, because only a jerk tells a stressed out 17 year old “I told you so,” that I’ve “rendered myself practically mute.”(Those are Obama’s words to describe Rahm Emmanuel’s middle finger injury.)

I have the high school freshman who is a whirl wind of disorganization. Every morning there is a flurry of panicked action requiring her to run around the house and shove things into bags. As the resident smarty pants in the house, I can’t help but wonder out loud why the fact that she has to bring in her homework or pack a bag for soccer is such a daily surprise for her. So far we have had some calamitous things left behind, like yesterday when she left two sets of cleats behind but packed up the uniform for a game, but the ball always seems to bounce her way. The game was canceled and she grabbed her sneakers from her gym locker and practiced in those.

Then there is the celiac. He went off to middle school, no problem there. I have just decided that even though he is a very talented football player, I have no stomach to watch him play. After watching two bigger guys sandwich him and “ring his bell,” I prefer to watch the game film later. I missed a long run, a touchdown catch and a game saving tackle by sitting home last week…but I think I prefer watching other people’s children play football to my own.

My baby is busy doing 4th grade stuff. This weekend is my last Circus Arts performance. I am celebrating all those “last time” milestones. I relish attending his soccer games because he is just so good, all of that time spent trying to keep up with the older kids channels beautifully into aggressive, strong play “on the pitch.” Starting today, he will go to school two days a week an hour early for extra-curricular activities…newly “found” time for me.

What I’m not thinking about, at all, is gluten. I don’t even have to go to two grocery stores anymore because every store in my area has gluten-free foods. My pizzeria has gluten-free pizza. I have bread mix but I also have a couple of good loaves of readymade bread in the freezer. I have cookies in a box, frozen dough in the freezer and mixes in my pantry. I have a cupboard with a variety of rice (including purple rice) and different types of corn or brown rice pasta. In that sense, I can’t believe how easy a gluten-free diet has become.

One less worry and one less errand is a good thing because life is hectic, but it’s also good. Thanks for reading!

Kendall Egan

Join the effort to get the gluten-free label defined

We are a few days into October, which is Celiac Disease Awareness month. But both Congress and the Food and Drug Administration do not seem to be aware that we're now more than two years past a deadline for important legislation that would benefit everyone with celiac disease.
Congress directed the FDA to define exactly what "gluten free" on a label means by August 2008 when it passed the Food Allergen Labeling and Consumer Protection Act. The FDA has come up with a proposal, but the proposal has been in limbo for far too long.
I attended a Celiac conference in Delaware last weekend where many people, both those who just found out they have celiac disease and those who have been on the gluten-free diet for a long time, had questions about confusing labels. Their lives would be much simpler if the gluten-free label clearly meant one thing.
That's not the case now.
Currently the only law that governs use of the "gluten free" on a package is a general requirement that a label be truthful and not misleading.
The proposed definition is much more specific, spelling out that: wheat, barley and rye can not be used outright in a food labeled gluten; ingredients made from those three grains can only be used if they are processed to remove the gluten protein; all gluten-free food must test to less than 20 parts per million of gluten; and only specially grown gluten-free oats can be used.
When I contacted the FDA recently to find out if there is anything new to report on the gluten-free definition, I got a very short answer. No updates.
So it seems like nothing is going to happen on this for a very long time unless the gluten-free community organizes a push to make something happen.
The American Celiac Disease Alliance, an advocacy group made up of celiac disease support groups, gluten-free businesses, medical centers and professionals, seems the logical leader of an organized effort to get the attention of both the FDA and Congress.
You can join the effort by going to the ACDA website and sending emails to your US Senators and House Representative. Then send another directly to the FDA. Forms on the site make this very easy to do.
I know there are enough gluten-free consumers out there to make their voices heard. On facebook and twitter, some gluten-free sites have 10,000 to nearly 30,000 followers. Just think how loud a group this large and with so much at stake could be. I can't think of a better, more productive way to mark Celiac Awareness month.
With a unified effort, we can make Congress and the FDA aware of how important a defined gluten-free label  is.

Amy Ratner

Transitioning to Middle School

For my celiac, the start of this school year brought a new building, new kids, new schedule and different teachers for each subject as he transitioned from elementary to middle school.

That’s a whole lot of explaining to do about what he can’t eat and why. Celiac Disease just screams “different” when “sameness” is so desirable. But, after the first month, it has been okay.

In language arts, one of the first writing assignments was to compare paragraph structure to an Oreo. The teacher passed out Oreo’s to drive the lesson home and then asked my celiac why he didn’t eat his.

I was unaware of this lesson until my celiac came home and asked, “Mom, where do you buy gluten-free Oreo’s?” Instead of giving him the answer, I asked “Why?” He explained the lesson, and the good news here is that the sentence structure component of the paragraph lesson stuck, but added that his teacher wanted to get him some Oreo’s that he could eat since they would be reinforcing the Oreo concept in Social Studies.

I emailed the teacher and told her where to get them, but offered to drop off an unopened package at the school for her. She found the GF Oreo’s, the Glutino version, in her local Stop n Shop and all was fine…my celiac even got to bring home the rest of the package!

Our first little roadblock and we skirted around it with zero problem. I know there are many pizza parties, dinners out and Oreo type lessons in the near future and a lot more explaining to do, but the good news is that it’s like water off a duck’s back for this kid.

There will be lots of those moments when my celiac will be called upon to explain why he isn’t eating or drinking something that looks delicious, but contains gluten. I hope it continues to be no big deal for him to stay gluten-free.

Kendall Egan

You are never too old to get celiac disease, study shows

The number of people in the US who have celiac disease has been doubling every 15 years, with most of the increase found among the elderly, according to a new study released today.

Researchers at the University of Maryland's Center for Celiac Research looked at blood tests of 3,511 people and found that one in 501 were positive for celiac disease in 1974, increasing to one in 219 in 1989. As people in the study aged, the incidence of celiac disease rose, according to  results published in the online version of The Annals of Medicine. The CFCR's landmark study into the prevelance of celiac disease in 2003 put the number at one in 133.

Carlo Catassi, MD, lead author and co-director of the CFCR, said you are not necessarily born with celiac disease and urged physicians to screen their elderly patients. The new research echoes the results of a 2008 Finnish study that found the prevalence of celiac disease in the elderly is nearly two and a half times higher than in the general population.

"You are never too old to develop celiac disease," said Alessio Fasano, MD, director of the CFCR.

Fasano said the study shows that environmental factors cause a person to stop being able to tolerate gluten at some point in their lifetime. If individuals can tolerate gluten for many decades before developing celiac disease, something other than gluten must be in play, Fasano said.

If those factors could be identified and manipulated, new treatments and prevention of celiac disease would be possible, he said.  Researchers have already identified specific genetic markers for the development of celiac disease, but these markers do not guarantee that an individual will eventually get it. How and why someone loses tolerance to gluten remains a mystery.

The increase in celiac diagnosis in the elderly also calls into question the assumption that celiac disease usually develops in childhood.

The study was based on blood samples from more than 3,500 adults who were followed over time. The Universita Politecnica delle Marche in Ancona, Italy, the Johns Hopkins Bloomberg School of Public Health, the Women & Children's Hospital of Buffalo and Quest Diagnostics also participated.

Are Lipton soup mixes still gluten free?

The oven-roasted potatoes recipe on the Lipton Onion Soup mix box has been a favorite side dish in our house for years.

So when an observant celiac support group leader from Philadelphia called Gluten-Free Living to ask if we knew if it was still gluten-free despite a change in the ingredients, I ran to my pantry. I had just bought a six pack of the mix at a warehouse club.

I am sorry to admit I did not look at the multi-pack in the store, especially since Gluten-Free Living always says you have to read the ingredients list every time you buy a food!

Both Lipton's Recipe Secrets Onion and Vegetable soup mixes now list autolyzed yeast extract made from barley. A consumer representative said this is a change in the formulation.

Lipton has a policy of always listing any potentially gluten-containing ingredient on its labels. Allergen labeling laws require wheat to be noted, but Lipton, a Unilever brand, voluntarily also lists any barley or rye. Consumers are advised to use the labels to determine if products are gluten free.

But the consumer representative said the onion soup is estimated to contain only 0.09 parts per million of gluten and the vegetable only 0.04 ppm. These levels are far below the 20 ppm of gluten the Food And Drug Administration has proposed as the cut-off for foods that can be considered gluten free.

I contacted Unilever's press office for more information about the tests used to get these amounts. Barley can sometimes present specific problems when it comes to testing. But so far I have not heard back. I'll follow up when I do.

Meanwhile, I had already researched autolyzed yeast extract made from barley for an On Your Plate column in an issue of Gluten-Free Living published earlier this year.

It turns out that autolyzed yeast made from barley is fairly rare. But I did find one company, Bio Springer, that produces some. Jean-Marc Pernet, head of market development for Bio Springer, said soup is one place that you might expect to find it.

Pernet said only a small amount of barley malt extract is used and only minimal traces of gluten remain in the final autolyzed yeast extract -- far below 20 ppm. In fact, Bio Springer certifies its product as gluten free.

Also keep in mind that yeast extract is typically used in very small amounts in a finished food. Pernet said there is little, if any, risk of finding gluten from yeast extract in a soup.

I don't know if the Lipton soup mixes use the Bio Springer yeast extract. But it would still seem the mixes poses little risk of containing any significant gluten.

I should also note the soup mix label says they are made in a facility that also processes wheat. It is very hard to know exactly what advisory statements like this mean because they are not regulated or required. A shared facility does not mean a product is automatically cross contaminated by other foods made there, but allows for the potential to exist.

Like all things gluten free, you have to weigh the facts that are available in deciding whether to keep using the Lipton soup mixes.

And remember to always read the label!

Amy Ratner

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