In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
The History - By Pam King, University of Maryland Center for Celiac Research
This article originally appeared in the Autumn 2003 edition of Celiac.coms Scott-Free Newsletter.
Celiac.com 01/20/2004 - One of the primary missions of the Center for Celiac Research (CCR) at the University of Maryland is to increase the awareness of celiac disease, and we are constantly trying to do just that. We have been pitching the celiac story to all sorts of media venues for the past five years. There have been many, many phone calls—sometimes with success. For years, we wanted the big headline, but the media wasnt quite ready. This year everything changed. We had a BIG story to tell, and not even a snowstorm or blackout was going to stop us from making the headlines.
Lets begin in February, 2003. A major press conference was planned for February 13th, to announce the publication of the Prevalence Study in the Archives of Internal Medicine. We spent seven months of detailed planning with the media, patients and parents, and when the day finally arrived, it was accompanied by a major snowstorm. The press conference did happen, but a number of the press was sidetracked to cover the snowstorm. This, however, did not prevent celiac disease from appearing on the front page of the Washington Post, as well as in numerous other big city newspapers. Since then news of the prevalence study has appeared on local television newscasts, and in the Wall Street Journal.
Then after five years of telephone calls and preparation, the call came: The NBC Today Show was ready to cover celiac disease! Over the next several months, we worked with the producer to arrange meeting times and to suggest individuals who could make the segment as informative as possible. The Today Show producer and crew spent a full day filming and interviewing at the CCR. Four days, and four cities (Boston, Baltimore, Alexandria, and Washington, DC) later, all taping was finished and the editing began.
Two weeks later, word came that the celiac segment would air on Friday, August 15th. The producer was careful to mention that the segment would air unless there was a major news story occurring on that day. We pondered what kind of story that might be, and as luck would have it, we received a call at 4 PM on August 14: "Have you seen the news, theres a black out in New York". Jokingly, we replied: "Cant you come up with something better than that?" Quickly typing on the internet to get into CNN we found that major story, which threatened to bump celiac disease off of the show.
Behind the Scenes - by Andrea Levario, American Celiac Task Force
It was a normal July Tuesday morning, sitting staring at a computer screen, sipping coffee—until I answered a call from Meredith Klein, a producer for NBCs Today Show. The call was a first in a series, thanks to all of the hard work by Pam King at the University of Marylands Center for Celiac Research. Knowing Dr. Fasano would address all of the medical details, Pam sought to ensure that the issue of food labels was also covered—thus, being the co-chair of the American Celiac Task Force I was being quizzed about labeling legislation, my sons diagnosis, and what time a crew could arrive to tape on Friday.
Just before lunch on August 1st, the two-man crew, and Meredith, the producer, arrived. A brief walk through of our house was done to determine where, and how to film—then action! To put my son Pablo at ease the crew let him show off his electric train set. Next, it was back to the kitchen and the gluten-free M&M cookies. Pablo measured ingredients while I read off the recipe. Once finished my husband Dimitrios, the other celiac, moved into the kitchen to whip up some gluten-free pizza. The crew was drooling, honestly. It looked nice outside, so Meredith decided to ask Dimitrios a few questions. All done, we slip the crew some cookies for the road. They spent four hours at our home, and then went for a lunch break. It was then time for us to head to co-chair Allison Herwitts house for the next part of the taping.
At 3:30 pm, the crew arrived at Allisons house in downtown Washington, D.C. and took some time to walk-through the house to determine its lighting. Tall ceilings, beautiful wall paintings, and a large antique chest mean extra setup time for the crew. "Can this door be moved, how about the chest?" The furniture is rearranged to fit the equipment. They promised to put everything back in place later.
We sat briefly in the kitchen while the crew taped our strategy session. Next up was Allison and her husband Jim, who staged dinner preparations. While the grill heated up, Meredith had us sit for our interview. She was off-camera without a microphone. She asked us a question, and we were to repeat it as part of the answer. It seems simple enough, until you feel that you are asking her questions to make sure the answer is what we want on TV. In contrast to Shelley Case, who was required to answer "live" on camera, we had the opportunity to say, "I need to do that one again." An hour later, the asparagus and sausages were finished cooking, and dinner was served. The addition of wine and Chebe Bread made it a perfect gluten-free meal—and day.
The Seven Day Roller Coaster Ride - by Shelley Case, Dietitian and Author
I was thoroughly enjoying some rest and relaxation with my husband and two daughters at our cottage at the lake after a very hectic speaking schedule, and the completion of the third edition of my book and numerous family commitments. This peace and tranquility came to an immediate halt upon receiving a call Tuesday, August 12th at 10 AM from my publisher who said that a Meredith Klein from NBC in New York was trying to reach me. I returned her call and was informed that the NBC Today Show had filmed a segment with Dr. Fasano and representatives from the Celiac Task Force. NBC decided this five minute and 45 second taped segment needed to be followed by a live interview about the gluten-free diet, and were looking for someone with media experience who could discuss the diet in three minutes or less! She said Dr. Fasanos group recommended me and could I come to New York for the interview. After a pause of shock, I said yes. Silently thinking she would say this would take place in a few weeks or months, my mouth dropped when she said it was this Friday, August 15th. I told her I would need to discuss this with my husband, Blair. He was very supportive and said that I definitely needed to go to New York, and that we would somehow work out the logistics. I called Meredith back at noon and said yes. From then on life went into "warp speed"!
Numerous calls and emails with Meredith about the interview and travel arrangements took place, as well as an emergency call to my hair stylist (every woman knows this is critical). Also, I felt Blair should join me on this exciting venture to New York City so we called Air Canada to see if he could get a flight using his air mile points on short notice. Amazingly he could but was only able to fly with me from Regina to Toronto and would have to go to Montreal and then to New York. I was to arrive in New York via Toronto at 2:30 PM and he would arrive at 4:30 PM. We decided to stay over Friday and Saturday at our expense to enjoy the sights of New York City and fly home Sunday evening. Again, he was not able to fly with me on the same flights, but at least we would be together in New York.
Wednesday was a blur. More calls with Meredith, making childcare arrangements, washing clothes, packing, a haircut and so much more to do before we left on Thursday at 7:15 AM Andrea Levario called and told me that they had waited a long time for this story and were counting on me to do a good job. "No pressure here" I exclaimed. My husband had secretly called the local media about the NBC interview. The next thing I knew I was giving a radio and newspaper interview that afternoon about the trip and celiac disease. Word also got out on the internet, and I received many calls and emails from dietitians and the celiac community throughout North America wishing me good luck.
Feeling tired and somewhat overwhelmed, I called some friends from our church asking them to pray for travel safety, peace of mind and clarity of thought during the interview, and that Blair and I would somehow be able to fly together all the way to New York and back.
Rising early Thursday morning, we headed to the airport and were delighted to discover they found a seat for Blair on the flight from Toronto to New York! Feeling very grateful, we were on our way to the Big Apple. Upon arrival, I received two calls on my cell phone. One from Meredith making sure I arrived safely and with instructions to head to the NBC studio for the 4:30 PM dress rehearsal, and another from CBC (Canadian Broadcasting Company) requesting a radio interview on Friday after the Today Show.
We arrived at our beautiful hotel on Central Park South, unpacked and were just about to leave the room when, shortly after 4:00 PM, the power went out. An announcement came on the emergency PA system that told us to remain calm and stay in our room. I told my husband that we should ignore the warning, walk down the 14 flights of stairs, and leave the hotel for NBC. Walking 10 blocks, through the packed streets of people streaming out of office and apartment buildings and traffic jams, we arrived at NBC where we met Meredith, the art directors and crewmembers. Light still came in through the windows of the studio, so we were able to organize all the foods into a display and discuss the format of the interview. Meredith told us to be back Friday morning at 8 a.m. for the 9:10 AM live interview with Katie Couric. They all thought that the power would be back on soon and told us not to worry.
We headed back to the hotel, walked up the 14 flights of stairs to our room and changed into cooler clothing, as it was 95F and humid. Another miracle—our door locks had an emergency battery back up system and the card key locks worked, unlike many other hotels with only power key locks, which meant that guests in such hotels were unable to get into their rooms and had to sleep in the lobby—or in the street! As we only had a light salad lunch at noon, we went searching for food and drink, and soon discovered how big a challenge finding it would be. Other than a few bars selling their remaining cold beers, restaurants and shops were closed. We finally found a deli that was letting in a few people at a time to purchase items—cash only. Fortunately my wise husband carried cash in addition to plastic. Using flashlights and candles, we sought some safe foods—plain nuts, sunflower seeds, potato chips, dried cereal and bottled water. We crossed the street and sat on a rock in Central Park and enjoyed our "gourmet meal," and watched many bewildered people roaming the streets of New York. We tried phoning home to tell everyone we were fine but our cell phones did not work.
At dusk we returned to the hotel and had to show our ID at the front door and again at the stairwell in order to get in. The hotels emergency preparation plan was in full swing and they issued each guest with a "glow stick" to get through the night. That little light was a precious gift in a very dark room with the pitch-black skyline out the window. The fear of not knowing what was going on around us, of whether or not we would soon have power, and whether I would be doing the biggest interview of my life the next morning created a lot of anxiety to say the least. My husband said we should plan for the best, set our travel alarm and go to sleep. He was soon in slumber land while I tossed and turned, mentally rehearsing the major points I needed to convey in less than three minutes! Still awake at 4:30 AM the lights and air conditioning suddenly came on. Totally exhausted from all the preparation over the last 3 days and no sleep Thursday night, I wondered how I could possibly think and speak clearly. Blair assured me that it would be fine and to get some sleep. Now was not the time to sleep! I jumped out of bed at 5:30 AM and into the shower and prepared to get myself together.
We walked to NBC not knowing that Meredith had left a message on my cell phone (which was not working due to the blackout) saying there was a limo at the front door waiting for us. We arrived at the stage door and no one seemed to know what was happening with the guests. After some sweet-talking, the guard let us in and we saw the indoor studio was dark—not a good sign. We went outside and there was Katie and the rest of the Today Show hosts on the air and all they were covering was the blackout. I told Blair that I was glad that they decided not to do the celiac segment this morning because all the people on the east coast would not be able to watch it. After the show was done I had the opportunity to meet Katie and give her my gift from Canada. We got a picture together and she said she really hoped NBC would reschedule the interview because Meredith had worked so long and hard to produce the story.
Returning to the hotel very disappointed and not knowing whether it would be rescheduled, we again went searching for food. After wandering around for 4 hours we finally found a restaurant that was open and seemed like a safe place to eat. The owner of the family restaurant of over 50 years told us she packed her freezer with ice and sealed the door before leaving the night before. We enjoyed our first real meal in NY other than the snack foods that we ate in Central Park the night before.
During the day when cell phone coverage began working again, several radio stations and Canadian TV called wanting to know what was happening in New York. I did live interviews "on the street" giving first hand reports of the events, and also some information about celiac disease. I also received an anxious voice message from Pam King wondering if I made it to New York and what happened with the celiac segment.
Later in the day we went back to the studio and found the art director who was able to check on his computer about Mondays show. Totally amazed, we learned NBC was rescheduling the celiac segment for Monday morning with Matt Lauer (All the other guests from Friday morning including the country band Brooks and Dunn were not rebooked). I immediately called Pam King with our good news. She was elated and relieved to know the celiac story was going ahead and posted the details to the Celiac List Serve. The next call was to Cynthia Kupper from GIG who posted the info on the Dietitian List Serve.
Now that we knew it was a go for Monday morning, Blair and I finally had a chance to relax. Over the next 48 hours we managed to see four Broadway shows and enjoy the sights of New York.
Meredith kept in contact with us over the weekend and told us a limo would be waiting again at the hotel to take us to the studio Monday morning! Sunday night we set our travel alarm, but also placed the official hotel wake up call, now that the phone was working. I did manage to sleep a few hours but still kept rehearsing in my mind the big interview. Upon arriving at the studio we were greeted by Meredith in the green room and went over the details of the interview. Then it was off to wardrobe where they pressed my jacket, then over to make-up where they touched up my lipstick and hair. Meredith and I went into the studio and reviewed the food layout. She also reminded me that Matt might not stick to the questions in the script. I had one minute to talk to Matt before we went to the taped segment, which I listened to very carefully, as I had not seen it before. After the segment Matt transitioned into the live interview and the first question he asked was not in the script! Fortunately I was able to answer that question, and then we moved on to the other questions that were in the script. Three minutes flew by and when it was over I felt the weight of the whole world off of my shoulders. Matt, Meredith and I had a short visit outside the studio and Blair took some pictures. Check out my website at www.glutenfreediet.ca and click on "in the media" to see the New York and NBC photos. I thanked Meredith for all her hard work on producing the celiac story, and for bringing me to New York, and I presented her with a gift from Saskatchewan.
Blair and I returned to the hotel in our limo and then did some quick shopping for our kids. Our last meal was at a restaurant called "Shellys of New York," then it was back to the airport where we managed to get a flight with seats together—all the way home!
As I reflect back on those seven days, it truly was an emotional and physical roller coaster ride that we will never forget. In spite of the ups and downs, we were truly blessed and we have so much to be thankful for—including the angels that watched over us!
If you have not seem the Today Show segment on celiac disease, please visit our website at www.celiaccenter.org and enjoy.
Shelley Case, B.Sc., RD, is a consulting dietitian, member of the Medical Advisory Boards of the Celiac Disease Foundation, Gluten Intolerance Group and Canadian Celiac Association and co-author of the celiac section in the Manual of Clinical Dietetics by the American Dietetic Association and Dietitians of Canada. She is also the author of the best selling book Gluten-Free Diet: A Comprehensive Resource Guide.