Thursday, October 28, 2010

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.


Tuesday, October 19, 2010

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

Monday, October 4, 2010

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

Friday, October 1, 2010

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