Celiac.com 11/12/2022 - It is the issue that unites every family affected by celiac disease: The need for clear and understandable food labeling in the United States. At a time when so few celiacs receive a diagnosis, those that do often fend for themselves when learning the gluten-free diet. Mistakes are made, and the person with celiac disease can face debilitating symptoms and health problems later in life.

After years of working to raise awareness, the celiac disease community felt the floodgates open when the U.S. celiac disease prevalence study was published in the Archives of Internal Medicine. Since February, there has been a significant amount of news coverage on celiac disease, including a segment on the Today Show, articles in the nation’s most prominent newspapers and news segments on local television stations across the country.

A key group of advocates has come together to build on this momentum, specifically by calling on Congress to enact legislation that would significantly improve food labeling for consumers affected by celiac disease and food allergies.

The American Celiac Task Force is comprised of research institutions, support organizations and industry representatives (14 organizations in all) that have been working since March to develop and implement a comprehensive strategy on food labeling. The Task Force is lead by highly experienced advocates who have a track record of success on Capitol Hill and are personally affected by celiac disease.

The primary objective of the Task Force is to influence the development of legislation that addresses the most important issues of the celiac community in a manner that is likely to be approved at the committee level and in both houses of Congress, and then signed into law.

While many celiacs have noticed that companies such as Kraft have voluntarily begun to identify the eight major food allergens in their foods (dozens of companies have voluntarily done the same), this arrangement has been at the initiative of the manufacturer, and many food companies are not doing so.

The American Celiac Task Force has decided to join forces with the food allergy community to work towards a comprehensive bill that will require companies to label the eight major food allergens in their foods. Wheat is one of those allergens, and it is the ingredient that causes the most headaches and heartaches for the celiac community (rye is almost never labeled as anything but, and barley, when not labeled barley is most often listed as malt).

This approach is most ideal because it has already received some industry support (evidenced by voluntary labeling) and it is not a piecemeal approach to labeling, unlike legislation that calls for labeling only the sources of spices and natural flavors. The American Celiac Task Force strategy would effectively encompass that and far more.

The reality of enacting food labeling legislation for celiacs is that a label stating "gluten-free" will not be acceptable to lawmakers and the industry (think of the last time you called a company and they said "we cannot guarantee that this product is gluten-free"). Eliminating the fear of lawsuits is the key to developing—and passing—food labeling laws. While we would all wish it to be the case, it is not possible to legislate away all of the work that a celiac has to do in order to go grocery shopping.

You can imagine, however, what a tremendous burden would be lifted if you could read a statement that says “this product contains wheat.” Many celiacs and their families are experiencing this now when they purchase a Kraft product, for instance.

What you imagine today could become real in the near future, but not without your help. Join the efforts of the American Celiac Task Force and speak with one voice to educate and influence members of Congress. You can find out how by going to www.celiaccenter.org/taskforce.asp and registering to receive regular updates. You can go to www.capwiz.com/celiac to send your member of Congress a letter urging them to support better food labeling laws.

Most importantly, if you receive publications, mailings or are a member of an organization on the American Celiac Task Force (such as the University of Chicago Celiac Disease Program) you can be assured that you will be hearing more about the American Celiac Task Force and what you can do to help this tremendous effort. Each organization is working to educate its own constituency directly, in addition to a public effort to urge families to join this effort.

Make sure you do your part.

Celiac.com 11/05/2022 - Although the foods we eat are most often considered to be composed of small molecules of fat, carbohydrate and protein, we of course actually take in very complex mixtures of long chains (called polymers) that only have the potential of becoming simple nutrients (or monomers) such as fatty acids, glucose, and amino acids that are eventually assimilated from the intestine into the body. Of the nutrient foods, proteins have special importance, because they contain many amino acids components, including the essential amino acids that humans are incapable of manufacturing from more simple building blocks.

Humans ingest 25 to 70 grams of protein daily, and this provides the amino acid building blocks that are required for the manufacture of important body proteins such as the common muscle protein (myoglobin), and the multiple enzymes that serve as crucial facilitators for maintaining numerous important bodily functions. Although it is common for us to consider the amino acids components of protein, we tend to skip over the idea that proteins contain 100 to 3,000 or more amino acid units tightly attached in a head-to-tail sequence and that proteins need to be processed to simpler products by efficient breaking of the links, so called peptide bonds, between adjacent amino acids. This involves the action of proteases secreted into the stomach (pepsin), from the pancreas (trypsin, chymotrypsin, elastase and others), and the final digestion on the surface of the small intestine by the attached peptidases. As a meal enters the stomach reservoir, it encounters the acidic environment produced by secretion of hydrochloric acid, making conditions ideal for the action of stomach pepsin to initiate the breaking of peptide bonds at the interior of the protein to shorten the long peptide chain. After 30 to 60 minutes, the partially digested protein fragments exit from the stomach and join the more neutral environment of the upper small intestine (so called because it is a tube with a smaller diameter than the stomach above it or the colon below; but, actually, it is more than 20 feet long, and it provides the environment for the complete digestion and absorption of nutrients and vitamins). In addition to being a long tube, the small intestinal area is greatly increased by folds and finger-like projections of Villi and small microvilli stacked upon each of the millions of surface cells of the small intestine. Indeed, the 20 feet of intestine with its diameter of only 2 inches or so, has the surface area 600 times that of a flat pipe, equaling that of a tennis court.

The first portion of the small intestine is the duodenum into which the stomach empties, where digestive enzymes and particularly the proteases are secreted from their storage sites in the pancreas into the duodenal space to mix with buffers that neutralize stomach acid and create the proper environment for the enzyme action on the protein fragments that have arrived from the stomach. The duodenum provides an ideal environment for the polymer foods to be broken down to smaller products. The vast majority (90-95 %) of proteins and other nutrients that we eat are rapidly processed to much smaller products that can then undergo final digestion on the surface of the small intestine as they are propelled by migrating waves of contraction (called peristalsis) down the length of the upper small intestine (the jejunum) with completion of the digestive-absorptive process in the lower small intestine (the ileum). In the case of most dietary protein, smaller peptides (2-6 amino acids in chain-length) and free amino acids are handed over to the intestine for final processing and assimilation into the body. Ordinarily, there is a great excess of the pancreatic enzymes, and the slowest process of nutrient assimilation is the intestinal surface digestion and absorption of the final small products.

Incomplete Processing of Gluten: A Problem in Celiac Sprue

Despite the great capacity of the human digestive-absorptive machinery, the efficient assimilation of dietary protein depends upon which of the bonds linking the amino acids can be attacked and readily broken. The ease with which these bonds are broken by proteases and peptidases depends particularly on the particular amino acids that are present on either side of the bond. Proteins that contain many proline amino acid units are resistant to digestion by the pepsin and the pancreatic proteases. This results in an incomplete breakdown of some proline-rich proteins such as segments of the gliadin in wheat. Indeed, the digestion of gliadin peptides yields larger peptides as final products, often 20 to 30 or more amino acid chain length; these may be further processed hardly at all by any of the proteases from human stomach, pancreas or by peptidases at the intestinal surface. Such large oligopeptides simply remain harmlessly in the intestinal lumen in most individuals and are subsequently processed by the bacteria normally present in the colon. However, in Celiac Sprue, the intact gliadin oligopeptides interact with the small intestine to initiate the cascade of events leading to tremendous loss of villi and the intestinal surface area with consequent loss of the normal intestinal digestive-absorptive capacity.

Can the Toxic Gluten be Detoxified?

The Celiac Sprue Research Foundation (CSRF) is conducting research into the processes of protein and gliadin digestion, with the view toward discovering ways to further digest the resistant gliadin peptides so that they are no longer damaging to the Celiac intestine. In an initial approach, CSRF is in the process of designing a trial of a supplemental peptidase that will break down those high-proline, poorly digested gliadin peptides that are formed during the normal digestive processes in the stomach and pancreas. The CSRF will be asking those in remission with Celiac Sprue to join in a study involving the ingestion of an intact gluten supplement as compared to gluten that has been exposed to a special added peptidase that is expected to further digest the gliadin peptides to render them nontoxic. Those with Celiac Sprue in remission will consume the regular gluten supplement for one two-week period and the peptidase-treated gluten for a another two-week period. The response of symptoms and special Celiac antibody and intestinal absorption tests will be done in a "controlled" way so that neither the investigators nor the Celiac volunteers will be aware of the particular preparation they were taking over each two-week period. We suspect that the peptidase-supplemented gluten will be rendered non-toxic and that no negative effect on symptoms or special Celiac tests will occur. If this "gluten detoxification" proves to be successful, the stage will be set for a full-fledged effort to validate the potential of supplemental peptidase therapy in Celiac Sprue.

Celiac.com 10/29/2022 - The bread machine is a great tool for everyone’s kitchen, dorm room or camper, but what happens once you plug the machine in and add the ingredients?

Some people, like one of the testers for Delicious Gluten-Free Wheat-Free Breads, simply add all the ingredients to the bread pan, close the lid, hit the programmed buttons and walk away. An hour or two later they return to a great tasting, freshly baked loaf of gluten-free bread. These free-style bakers do not worry if an edge of the loaf shows flour that is not totally mixed together or if the bread crust is not totally smooth with a nice rounded top.

Then there are people who love to peek, prod and perfect their bread baking techniques into an award winning loaf of bread. Perhaps you fall somewhere between these descriptions. Either way, you will enjoy these Best Bread Baking Tips.

Peek

You can ‘peek’ at how well your bread machine is mixing the dough by either lifting the lid, or looking through the window. Reasons to peek include: adding of liquid; adding nuts or seeds during the beep; simple curiosity or you just can’t keep your hands off the equipment. Another reason to peek is to verify the bread is rising, or to determine if it has risen enough. Try to not raise the lid during the rising cycle. If your machine has a small window, shine a flashlight into the window to avoid raising the lid.

Prod

You may wonder why some people ‘prod’ the dough. Think of it as another term for helping the dough to mix. The ultimate goal is to have the dough appear silky and spread to the sides of the bread pan with just a hint of a bump or dome over the paddles. In some of the recipes you may even see paddle marks in the dough.

Perfect

Hints for perfecting the bread:

• Before you remove the bread from the pan, verify it is done. Tap on the top of the loaf. It should sound hollow. The bottom should also sound hollow. This works for both bread machines and oven made bread.
• Sometimes paddles stick inside the loaf when removing the bread from the pan. Do not worry. Use a toothpick to loosen the bread from around the paddle. Do not use a knife as it will remove some of the non-stick coating from the paddle.
• If you leave the paddle inside the bread until it cools, stick a toothpick with a flag on it (purchase at your craft store) into the top of the loaf. That will remind you to remove the paddle before you start cutting.
• Wait at least two hours before cutting your bread to allow the bread to finish baking. This is called carry over baking.
• Use an electric knife or serrated bread knife for cutting the bread •Save the bread crumbs from cutting for meatballs, meatloaves or to sprinkle on salads.

Lastly, double wrap and freeze the bread you will not be eating within the next couple of days. The best method I have found for thawing and warming up the bread is to pop the slices into a 150°F oven for a minute or two. You will be pleased at how fresh the bread feels and tastes.

Portuguese Sweet Bread

from Delicious Gluten-Free Wheat-Free Breads by LynnRae Ries.

One taste of this bread and you will know why it is recognized as one of the great traditional breads.

Wet Ingredients:

• 3⁄4 cup eggs
• 3⁄4 cup water, more or less as 
• needed
• 1⁄2 cup sweetened condensed 
• milk – NOT evaporated milk
• 1 teaspoon rice vinegar
• 2 Tablespoons olive oil
• 1⁄2 teaspoon grated lemon rind
• 1 teaspoon vanilla extract

Dry Ingredients/Flour Mixture:

• 1 cup white rice flour
• 1⁄2 cup tapioca starch flour
• 1⁄2 cup potato starch
• 1⁄2 cup cornstarch
• 1⁄2 cup sweet rice flour

Other Dry Ingredients:

• 1 teaspoon salt
• 1⁄4 cup dry milk powder
• 1 teaspoon egg replacer
• 1 Tablespoon xanthan gum
• 1⁄2 teaspoon ground nutmeg 
• (optional)
• 2 1⁄2 teaspoons yeast

Directions:

Put ingredients into the bread pan in the order recommended by the manufacturer (usually all the wet ingredients go in first, then the dry and the yeast is sprinkled on top). Set your machine for Dough (to mix and rise) and then to Bake. Walk away or Peek and Prod. This bread will remind you of the Hawaiian Sweet Bread or Pan de la Luce.

Celiac.com 10/22/2022 - Close to one quarter of the world’s population, in both industrialized and developing countries, suffer from iron deficiency and/or iron deficiency anemia. Although it is a widespread problem, those who are gluten sensitive should be particularly careful to monitor their iron status regularly. Iron deficiency is not only an important sign of undiagnosed celiac disease, it may also reflect some degree of intestinal damage—and most of our iron is absorbed in the same part of the intestine as calcium. The jejunum is the site of most of the damage caused by gluten, which may explain the significant overlap between gluten sensitivity and iron deficiency anemia.

The two primary causes of iron deficiency are either inadequate absorption of iron or excessive blood loss, and intestinal bleeding is common among the gluten sensitive. Iron deficiency can also result from vitamin A deficiency, which can also be a feature of celiac disease.

Several years after I began following a gluten-free diet, a blood test that was part of a regular physical exam revealed that I was mildly anemic. By now you may be wondering, just as I did, what the difference is between iron deficiency and iron deficiency anemia. Simply put, iron deficiency anemia is where the hemoglobin content of one’s blood is below normal. This means that there are fewer blood cells that carry oxygen to be distributed throughout the body.

My greatest concern with my own inclination to anemia, both before and after diagnosis, is that iron deficiency can impair memory and reduce learning acuity. Most of this impact occurs prior to the development of anemia. Iron deficiency first depletes iron stores in a wide range of tissues and organs before it causes significant losses to hemoglobin. Iron is needed to make several neurotransmitters including dopamine, serotonin, and norepinepherine. These neurotransmitters are involved in a wide range of brain activities related to alertness, attention, remembering, learning, and a variety of other brain functions. Some researchers at the University of Maryland have reported that iron deficient adolescent girls show a significant improvement in IQ test scores after only 8 weeks of taking iron supplements.

There are many other symptoms of iron deficiency, including shortness of breath, light-headedness, lethargy, and pale skin. However, it is important not to just rush out and start taking iron supplements. Iron overdose can cause damage to the liver, the heart, or the pancreas. The body must maintain an exquisitely careful balance for optimal health. Further, a significant number of celiacs also suffer from hereditary hemochromatosis which is a condition in which the body is overly thrifty, storing too much iron. Supplementing iron in such a case could have some very serious consequences. Regular testing is an important strategy.

Iron deficiency or anemia is more likely to be ignored or to be given less attention simply because of the frequency with which it occurs. However, it is a particularly important issue to those who are gluten sensitive, if only from a quality-of-life perspective. Even if peace of mind is the only result of getting regular check-ups that include a complete blood count, our reward is large.

Similarly, early detection and reversal of iron deficiency before it causes memory disturbances and other unwanted symptoms, or before it goes on to develop into anemia, could be a huge dividend to collect from paying careful attention to our iron levels.

Celiac.com 11/19/2010 - “To talk to someone who does not listen is enough to tense the devil.” – Pearl Bailey

No matter what your reason for your dietary restriction, one of the hardest things about this diet is talking to people about why you must be gluten-free, and trying to explain the diet itself.  Responses range from complete understanding (sorry, this is extremely rare), to people who think they understand but don’t (“Oh, this is just like when I gave up liver for Lent!”), to those who don’t care an iota about your diet, to the other 95 percent of the population who really want to understand, but just don’t get it.

There is an art to talking to people about your condition and the diet, but first there are a few basic ground rules you should know and follow.

Attitudes Are Contagious

When you’re talking with other people about your diet, especially close family members who will be “in this” with you for the rest of your life and who may also someday learn they must go gluten-free, remember that attitudes are contagious.  If you give the impression that this diagnosis has ruined your life, and that the diet is worse than astronaut food, others will feel that way, too.

First, these things aren’t true, even if it seems that way at first.  Second, you don’t want your husband, wife, or kids to feel this way, especially if they’re the ones on the diet.  Be careful what you say. Even when they appear to be tuned out, kids and spouses hear what you’re saying.  Feelings can be hurt, and lasting impressions can be made.  Portray a positive attitude about the diet if you can; you may even find it rubs off on yourself.

Everyone’s a Doctor

Before you begin talking to people about your medical condition, you should know that nearly everyone, regardless of education (or lack thereof), is a doctor.  Especially when it comes to gastrointestinal distress, a subject that nearly everyone on the planet is at least vaguely familiar with.

Once you get past the squeamish introduction, you’re likely to be cut off by people who want to tell you what you have.  “It’s lactose intolerance,” your best friend assures you.  “No, I think you have all the warning signs of colon cancer,” argues Doctor Dad.  “You just need acupuncture in your butt,” advises your eight-year-old wanna-be doctor son who just learned the word (acupuncture, not butt).

You may have trouble getting everyone to stop with the advice and listen, but try to get through your dissertation.  Then you can look forward to one of several responses (percentages are based on personal experience, not scientific findings):

• Complete understanding (0.1%):  These people will listen intently as you discuss villi, bowel movements, gluten, and modified food starch, barely moving a muscle as they hang on your every word, taking careful notes so as not to poison you at your next get-together.  These saints have also been known to hang flyers in their kitchens, listing safe and forbidden foods in case you drop by for an unexpected visit.  Worship the ground these people walk on, because they’re few and far between.
• Pseudo-understanding (they think they get it but they don’t) (0.9%): These people are easily identifiable, because they nod much too quickly when you explain the situation to them.  Staccato-type nodding of the head is usually accompanied by rapid-fire successive affirmative phrases such as, “Uh-huh, sure, mm-hmm, yep, gotcha, sure, yep, of course, mm-hmm.”  Don’t burst their bubble; these people are used to knowing everything, and usually can’t be told otherwise.  I recommend that you bring your own food to get-togethers with these people.
• Absolute and unveiled lack of interest and concern (4.0%): Gotta hand it to ’em, these folks are honest.  Don’t try to push a rope.
• Desire is there, but they just don’t get it (95.0%): These people mean well, but either don’t have the ability or don’t want to take the time to understand.  Don’t be annoyed, offended, or otherwise put off.  Their attitude can’t change the fact that you feel a lot better now that you’ve eliminated wheat or gluten, and that’s what really counts.  Don’t disown them (especially because most of your friends and family will fall into this category), and don’t berate them, either.  Your diet isn’t their concern, even if you think they should care more than they appear to.

When Those Closest to You Just Don’t Get It

Obviously, dealing with this last (and vast) category is difficult.  Already you’re saddled with the extra responsibilities and challenges inherent to the diet, and it may not sit well with you that some of the people closest to you are those who put forth the least effort to understand.  We expect family and friends to support us, show concern, offer assistance, and make things that are important to us important to them, yet often it is exactly those people who disappoint us the most.

In this situation, we have the additional challenge of dealing with the fact that we’re around them frequently, and food is often a part of social situations.  Trusting them to provide foods that are safe, or worse yet, dealing with the anger and resentment when they don’t even bother, can test the most solid of relationships.

If they just don’t get it because they’re simply not capable, forgive them and move on. Some people are set in their ways, and others are intellectually incapable of grasping the intricacies of the diet.  Be aware and be prepared with your own foods when getting together.

When loved ones are capable but just don’t want to bother taking the time to learn about the diet and your condition, you may experience feelings of hostility and resentment.  It’s okay to be mad, but don’t wallow in the anger; it serves no purpose, and will provide you no benefit, because they’re not going to change, and you can’t force them to want to care.

It’s important to avoid falling into the role of the victim.  You may have some serious medical conditions, and you could be getting some sort of reinforcement from feeling victimized, both by the condition and the people around you.  It gets you nowhere, except into a rut of negativity.

People who just don’t get it aren’t going to suddenly show interest in you, your condition, and the diet. Just as they don’t have to cater to your diet, you don’t need to cater to their insensitivity and thoughtlessness.  Forgive them for their lack of sensitivity, their narcissism, and their indifference (but unless you want to start a family feud, do it in your heart rather than out loud), and move on.  They may be sensitive, generous, caring people in many ways, or maybe they’re not.  In either case, you can’t force them to care or learn about your condition or diet, and as frustrating as it can be, your only choice is to accept that fact.  Don’t allow yourself to get mired in the negativity that their apathy can create, and don’t lower yourself to their level either by caring less about their situations.

Need-to-Know Rating Criteria

HIGH: Will these people prepare food for me?  If so, it’s important for them to understand which foods and ingredients are safe and which are forbidden.  If you can narrow it down for them, do so.  For instance, don’t go to a restaurant and ask them what they have that’s wheat or gluten-free and expect to get a good answer.  Instead, peruse the menu, and figure out what looks as though it is safe, or could be made wheat or gluten-free.  Then you can get into the intricacies of cooking procedures, contamination issues, and ingredients.

Sometimes it’s easiest to explain your condition in terms of an allergy, even if your condition is celiac disease (which is not an allergy).  People understand, for instance, that peanut allergies can be severe, and even a little peanut can cause some people to have a serious reaction.  Sometimes it’s necessary to explain that you have a “severe toxic reaction” to wheat or gluten before people will take your condition seriously.  Otherwise, they may think that it’s okay just to pluck the croutons off the salad after the fact.

MEDIUM: Are they asking out of curiosity or nosiness?  Most people who ask about your diet do so out of genuine curiosity rather than abject obnoxiousness.  Maybe they have dietary restrictions of their own, and wonder if yours are the same as theirs.  Maybe they’re nutritionists, or maybe they’re just genuinely curious.  In any case, don’t be offended, but don’t feel as though you have to give a dissertation on the advantages of a wheat or gluten-free diet either.  Offer as much information as you’re comfortable giving, and as much as it looks like they’re truly interested in hearing.

A good response is usually generic at first, adding information as the listeners seem to want it.  “I have a condition that makes me unable to tolerate gluten, so I eat a gluten-free diet” is usually a good start. If they want to know more, they’ll ask.

LOW: Do they warrant a response?  When the 16-year-old kid wearing a paper cap and taking your order at the drive-up window asks with a strong Valley Girl accent, “Like, what’s wrong with the bun, dude? How come you ordered, like, all your burgers without, like, the bun?” your best response is to bite your tongue.  No response is needed, unless you can muster a good, “Like, what-EVER, dude, I like ’em that way.”

Celiac.com 01/20/2004 - 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, there's 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

/images/case_todayshow03.webpIt 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 Maryland's 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 Herwitt's 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.

/images/case_todayshow02.webpWe 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"!

/images/case_todayshow04.webpNumerous 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.

/images/case_todayshow06.webpWe 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.

/images/case_todayshow01.webpWe 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.

/images/case_todayshow05.webpLater 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 "Shelly's 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!

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 wasn't 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.

The History - By Pam King, University of Maryland Center for Celiac Research