Monday, September 29, 2008

How the Numbers Add Up

When my daughter, Amanda, was diagnosed with celiac disease 16 years ago, we were told about one in 2,500 people had it. Then an important study found that actually one in 133 people have celiac disease.

Being a word person -- honestly -- the numbers were still hard for me to picture clearly. How many people would that likely be in a room, in a school, in a stadium, in a country, in the world?

But I got a better focus when I went to the fifth birthday party for the National Foundation for Celiac Awareness in Philadelphia last week.

Nearly 1,400 people packed the concourse of the Wachovia Center, usually home to the Philadelphia Flyers ice hockey team, to feast on gluten-free nibbles offered by 35 Philly-area restaurants. When you see a group that big and enthusiastic, all focused on the gluten-free diet and lifestyle, the numbers take a new shape and meaning.

What they meant on this particular evening was a crowd welcomed and catered to by mainstream chefs. Each restaurant reportedly had to prepare at least 1,200 samples of whatever dish they were offering. The chefs were not shy about trying new and exciting things. There was octopus salad, and duck and lobster with macaroni and cheese. All delicious. Even better each restaurant committed to permanently add gluten-free dishes to its menu.

There's one more important thing to say about that night and numbers -- NFCA raised $340,000 for programs to spread awareness of celiac disease. That can only mean an even bigger crowd next time. Congratulations to NFCA and happy birthday!


Wednesday, September 24, 2008

Cinnamon Sugar Donut Habit in a Bad Economy

I walked out of a health food store with two bags of gluten-free food for $81 bucks. Two bags, $81 dollars. That was two Saturday’s ago before Wall Street imploded. Now, as my stomach flip flops thinking about the college funds, the retirement account and the general economy, I wonder how I am going to support my cinnamon sugar donut habit.

Eighty-one dollars for gluten-free food, most of which has been eaten by now, is shocking. Stores need to make a profit and so do food vendors, they have bills to pay and families to feed too. During my five and a half years of selling advertising space to these vendors, I’ve gotten to know many of these brave entrepreneurs and they really deserve whatever profit margin they make.

People who want to create good gluten free foods face extraordinary hurdles to get their businesses up and running. Most start out in their own kitchens, and after finding a proprietary blend of ingredients that produces a great product, the journey towards mass production begins.

Sourcing ingredients and industrial kitchen space free from cross contaminants is not easy, I’ve heard many variations on this theme. The work is 24/7 and distribution is a Byzantine process to get to the holy grail of Whole Food’s shelf space. Each person has a story, and a passion to make sure that people have great tasting gluten-free food to replace what he or she loved before a celiac diagnosis.

I feel that we have helped some of these companies grow by mentioning their products or by offering an affordable ad for a new kid on the block. It helps all of us in the long run to spread the word about new vendors.

But, in a deepening economic crisis, I am going to have to figure out how to balance my “need” for cinnamon sugar donuts and my real need to cut back expenditures. Although, it does all come back to supply and demand and eventually the costs will go down. The more of us out there buying gluten-free food will lead to increased shelf space dedicated to gluten free food. And I can only hope that as production and distribution get larger, a greater economy of scale will mean lower prices for a finished product.

In the meantime, I will continue to buy those donuts because they are truly fabulous heated up and dunked in coffee while reading the depressing business news.
Kendall Egan

Thursday, September 18, 2008

Labels "may contain" confusion

A "may contain" label on an otherwise gluten-free food has always made me a little nuts.

So I was glad to be able to cover the Food and Drug Administration's hearing on advisory labels this week because it meant someone was going to start doing something about these pesky notations on foods.

When I'm in the grocery and I have one of those "Eureka" moments of finding a mainstream product that does not contain any wheat, barley or rye, I hate having it ruined by an aside that says something like, "May contain wheat," or "Made in a plant that also processes wheat," or "Made on a equipment that also processes wheat."

What am I supposed to do with this information? Not buy the product?

Am I really supposed to worry that a fruit snack might be a threat to my daughter who has celiac disease because somewhere in the plant wheat might be used? And what should I make of products labeled "gluten free" that also have this kind of warning?

At the hearing I learned I have a lot of company in my confusion. It includes others with celiac disease, gluten intolerance, and food allergies. Many of us are playing a guessing game in which we try to figure out exactly what food companies are trying to tell us with these warning labels.

Consumer advocates at the hearing said people try to evaluate how risky a food might be based on the wording of the label. They conclude it is safer to eat something made in plant that processes wheat, for example, than to eat something made on equipment that processes wheat.

That makes sense to me.

But food industry representatives said the logic does not match up with the facts. One company that shares equipment might do a much better job cleaning it up than a company that has an allergen cross-contaminating the manufacturing plant.

So really, what are we, and the people with allergies who face life threatening reactions, supposed to do?

The first thing is to write to the FDA and tell them how big a problem these labels are in your daily life. Use personal stories, that always seems to get attention. You can send a letter by regular mail or over the Internet. (You'll find both addresses on our website,, under the current events/newsflash section.) The deadline is Jan. 14, 2009, which means improvements aren't coming in a few weeks or months, but at least there's hope they are coming.

The FDA said it wants to know if labels are helpful to consumers. That's an easy question to answer and the answer is "No."


Sunday, September 14, 2008

Soccer Mom

I’ve been a “soccer mom” for nine years, and I’m not talking about a target group for those seeking elected office. I have been the mother of children playing soccer for nine years.

The recreation level soccer is the cutest four on four format on a micro field with the kids subbing in and out constantly during a scrimmage. When we started, parents were slated into a rotation to bring drinks during the break between drills and scrimmage. Somehow over the years, “snack” got inserted into the break.

It just befuddled me as to why kids needed a “snack” after thirty minutes of kicking drills. Soccer was a sum total of seventy minutes of exertion, and presumably these suburban kids had eaten a meal within a reasonable time of the soccer session.

This particular year, moms who were burdened with the responsibility of bringing snack along with the sugar laden sports drinks, mostly took the path of least resistance. Snack moms bought the gigantic Costco pack of brownies or cookies, or packaged crackers or chips for the team.

Now throw in a kid with celiac disease. All of a sudden, the sports field became another place where a young celiac had to say “no thank you.” The field, the gym, the baseball diamond and the gridiron were a place of equality with their peers…there is no gluten in sports! Or, there was no gluten in sports until someone decided that little kids needed a snack after a few kicks of the ball.

When it was my turn to be the snack mom, I wanted something my soccer player could eat. I too went to Costco and bought this huge bag of navel oranges. After scrubbing them, I got out my cutting board and sliced them all up and put them into a bowl. It took a lot of time and there was a lot of sticky juice to clean up. Yes, I’m whining. Every now and then things bug me…and making a gluten-free snack for recreation soccer bugged me.

My son was actually embarrassed that I was bringing oranges instead of “snack.” But I said that orange sections were a “retro” snack and explained to him that oranges and water were the only things allowed on the sidelines when all the parents played soccer as kids.

It was a really hot day and the oranges were lustily eaten by a bunch of sweaty boys. Peels were chucked at each other and eventually found their way into a trash bag. Costco items can feed the masses and several parents dug in for some orange sections too.

Celiac or not, no little soccer player needs a brownie washed down with a Fruit Punch Gatorade before he scrimmages. The second time I was snack mom, I got a little smarter….I bought the Costco size package of grapes!
Kendall Egan

Monday, September 8, 2008

Lunches packed with love and a little flair

Every story I've read about lunches for this back-to-school season mention the bento-box style of lunch preparation.

My reaction is a mix of fascination and relief.

Who could help but be intrigued by the Japanese bento, described as a compact, balanced and visually appealing meal packed in a box?

First, they always look great in a photo. The collection of colorful, little containers in all kinds of shapes are designed to tuck snugly in the bento box. Then there is the food itself, everything from apple slices deftly sliced into bunnies to cucumbers cut into links like a construction paper chain to yellow peppers snipped into stars.

Aside from being really cute, it also struck me immediately that the bento box is perfect for a gluten-free lunch.

So I wasn't really surprised when I went to the blog "lunch in a box" and read that its founder, Deborah Hamilton, had originally started making bento box lunches for her husband when he was diagnosed with celiac disease. (He later found out he was misdiagnosed, but Deborah now makes bento box lunches for their young son, who is called "Bug" on the blog.)

The bento box takes the homemade lunch and turns it into a desirable meal instead of an also-ran to pre-packaged Lunchables or cafeteria fare. The little containers are perfect for cut-up fruit and vegetables, dip, cubed meat and cheese, and a little candy treat. And they don't emphasize the sandwich the way typical American lunches do.

There are a few blogs you can go to for packing ideas and recipes, some of which are gluten-free and others which can easily be adapted. Two possibilities are and It's not unusual to find that the blogger has some connection to a food allergy or intolerance. Be forewarned that some bento bloggers are actually artists with a paring knife posing to be merely moms making lunch. I'm just kidding!

But that's where my relief comes in. My gluten-free daughter is now in college and there's no way I can whip up culinary artwork -- I mean make lunch -- for her everyday.


Friday, September 5, 2008

Celiac Sleepovers

I got the call a little while ago, “Mom, I want to sleep over at Will’s house tonight.” I have to admit that this sends me into scramble mode as I start planning the next twelve hours of meals away from home. Even though Will’s cousin is a celiac and they have adjoining back yards, I do a mental assessment of what is in my freezer and pantry.

My son rushes home to pack his toothbrush, pj’s and sleeping bag. I rush to pack a snack, dinner and breakfast. Luckily they had planned on cheeseburgers and fries, and this family is a seasoned bunch of pro’s on serving up bun less burgers and interesting snacks for celiacs.

Into his bag I placed two slices of cinnamon raisin bread, a huge baggie of cereal and a bag of pretzels. Being hungry would put a damper on the planned camp out on the screened porch, although I think tropical storm Hanna will wreak more havoc with their plans.

Honestly, if he had potato chips, an apple and vanilla ice cream for dinner and choked down a few eggs in the morning….it would be just fine. Maybe he wouldn’t achieve the right balance on the food pyramid, but it’s one night. He would be with one of his best buds and he’d have gluten-free food in his tummy.
Kendall Egan

Tuesday, September 2, 2008

Gluten-free packing in face of emergency

If you had to pack for an emergency evacuation, what would you put in your suitcase?

Nearly 2 million Louisiana residents had to make that decision this past weekend when they were asked to leave home as Gustav barrelled toward them like teenage hot-rodder on an open road. Fortunately, the hurricane slowed down and veered away from still-healing New Orleans. While it did cause some damage, most people will return to all the comforts and contents of their homes.

But no one knew that when it was time to choose what to take on the one-way route out of town. Important papers were surely packed, along with medicine and money and enough clothes to keep a person decent. Perhaps computers with needed files, and old photographs, and precious artwork done by children got loaded into the car before a last look and a quick good by. If I had to choose, I would look for the things that are irreplaceable - old letters from my husband, cards sent by my grandparents, funny notes scribbled by my kids, and video tapes of their early years.

At least with Gustav there was time to think about what to take. When Hurricane Katrina hit almost exactly three years ago, evacuation was a matter of life and death and there was no time for many people to gather belongings. This time, having learned from Katrina's mistakes, city and state officials made it clear everyone should think ahead, pack up and go.

But what about gluten-free food for those who follow the gluten-free diet? Would it merit such valuable cargo space?

Soon after Katrina, we ran a story about emergency preparedness in Gluten-Free Living. The main point was that gluten-free disaster planning is pretty similar to regular disaster preparation. Experts recommend having on hand basic survival items that will last three days, including water, non-perishable food that requires no cooking, a manual can opener, ready-to-eat canned meats, fruits and vegetables, peanut butter, crackers, and protein or fruit bars. For more information go to or

Just make sure all the items you stockpile are gluten free. If you ever have to leave home on short notice, you'll have everything you need to get you through a few days. And you won't have to worry whether there will be any gluten-free food options on the road. Even if you never face a natural disaster, an emergency food supply can come in handy if power in your home and community is out for a few days.

I'm thankful New Orleans was largely spared, mindful some people in Louisiana did suffer damage to their homes and optimistic repairs will be rapid this time.

But hurricane season is just beginning -- Hanna is already lurking near the Bahamas and expected to hit the Southeastern coast by midweek -- so it makes sense to stockpile gluten-free essentials and think about what valuables you would pack if you had to choose.