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  1. This article originally appeared in the Summer 2004 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 06/08/2010 - At first, a diagnosis of celiac disease can be daunting, to say the least, and for some people, even devastating. It means giving up some of your favorite foods—pastas, breads, pizzas, cakes, cookies, and pretzels—at least as you used to know them. So why should you consider yourself lucky if you’ve been diagnosed with celiac disease? Because you’ve been given the key to better health. Okay, so I’ve never been good at saving the punch line for the end. It’s true, though, you DO have the key to better health: A gluten-free diet. Still not feeling like you just won the lottery? Well, consider this: Celiac disease is the most common genetic disease of humankind—yet for every person diagnosed with celiac disease, 140 go undiagnosed. They may still suffer from gastrointestinal distress, headaches, depression, joint pain, or other symptoms. Many are told they have “irritable bowel syndrome,” fibromyalgia, or chronic fatigue syndrome—and that there’s nothing that can be done for them. “Go forth and live your life in misery,” is, in essence, their lifetime sentence. You, however, know that simply a dietary modification (no, I didn’t say a “simple dietary modification,” and you’re probably acutely aware of the difference) is the key to better health. The gluten-free diet is a medical necessity for our family, but it is also a healthy way of life. Sometimes I used to think, “If only I could not have to worry about making tonight’s meal gluten-free, I’d make…” What? What would I make?!? Would I make macaroni and cheese from a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now there’s a healthy meal (well okay, every now and then maybe!). People often tell me they find the cost of the gluten-free diet to be prohibitive. True, the cost of a loaf of gluten-free bread could buy you an entire meal in some restaurants…but think of this: What if your condition required prescription medication? The cost of even some of the cheapest medications could buy (at least) a loaf of gluten-free bread each day. We are fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available (even the “PollyDanna” in me couldn’t have said that with so much conviction 13 years ago when we first began this lifestyle!). These days, customer service reps on the other end of the toll-free lines at food companies actually know what we’re talking about when we ask if their products are gluten-free. Excellent cookbooks and resource books abound, as do support groups and seminars. Yes, if you’ve been diagnosed with celiac disease, you can consider yourself lucky for a number of reasons. If you’ve read my books or heard me speak, you know my mantra, so sing it with me now: “Deal with it…don’t dwell on it!” Before long, you too will realize how very lucky you are.
  2. This article originally appeared in the Spring 2003 edition of Celiac.com's Journal of Gluten-Sensitivity. -Yes, there’s more to life than rice and corn! Variety, it’s been said, is the spice of life. So what’s a person to do when they’re told to eliminate wheat and/or gluten from their diet? Most turn to rice, corn, and potatoes—an adequate set of starches, but ones that are sorely lacking in nutrients, flavor, and imagination. The superheroes of gluten-free grains are often referred to as “ancient” or alternative grains, which are loaded with nutrients and unique, interesting flavors. The following is a condensed excerpt from my newly published book, Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living. “Alternative” Grains: The Superheroes of Gluten-Free Grains If you’re an adventuresome eater, you’re in for a treat. In searching for alternatives to wheat, rye, or barley, you’ll discover a variety of wheat-free/gluten-free grains that you may never have heard of before, many of them loaded with nutrients and robust flavors not found in typical grains like wheat and rice. If you’re not the adventurous type and you just long for the ease of a few tried-and-true favorites, you’ll find them here as well. Perhaps you fall into still another category—you’ve been eating a wheat or gluten-free diet for a while and you think you already know everything there is to know. Okay, what’s quinoa, and how the heck is it pronounced? Is teff wheat-free? Do Job’s Tears have religious significance? If you don’t know the answers to these questions, or if you think ragi is a spaghetti sauce and sorghum is what you get when you have your teeth cleaned, it’s time to move on to lesson one. Alternative Grains and Non-Grains Even if you can’t eat wheat, rye, barley, or oats, there are several other grains, fruits, and legumes that are not only acceptable alternatives to them, but they also happen to be loaded with flavor and nutrients. Here are some of the many choices available to those on a wheat and gluten-free diet (WF/gluten-free): Amaranth (WF/gluten-free) Buckwheat/groats/kasha (WF/gluten-free) Cassava (arrowroot) (WF/gluten-free) Chickpea (garbanzo) (WF/gluten-free) Job’s Tears (WF/gluten-free) Millet (WF/gluten-free) Montina (WF/gluten-free) Oats (WF/gluten-free, but oats can be contaminated with wheat and other grains) Quinoa (WF/gluten-free) Ragi (WF/gluten-free) Rice (WF/gluten-free; only brown rice is whole grain) Sorghum (WF/gluten-free) Soy (WF/gluten-free) Tapioca (WF/gluten-free) Taro root (WF/gluten-free) Teff (WF/gluten-free) Many of the proteins found in these alternatives are a great source of complex carbohydrates. The fuel from these carbohydrates, found in plant kingdom starches, produces what nutritionists call a protein-sparing effect, which means the body can meet its energy requirements without dipping into its protein reserves. Several of these alternative grains and non-grains are high in lysine, an amino acid that controls protein absorption in the body. Because this amino acid is absent from most grains, the protein fraction of those grains is utilized only if eaten in conjunction with other foods that do contain lysine. All high protein grains are better utilized by the body when they are eaten with high-lysine foods such as peas, beans, amaranth, or buckwheat. Amaranth (WF/gluten-free): Loaded with fiber and more protein than any traditional grain, amaranth is nutritious and delicious, with a pleasant peppery flavor. The name means “not withering,” or more literally, “immortal.” While it may not make you immortal, it is extremely healthful, especially with its high lysine and iron content. Buckwheat (groat; kasha) (WF/gluten-free): It sounds as though it would be closely related to wheat, but buckwheat is not related to wheat at all. In fact, it’s not even a grain; it’s a fruit of the Fagopyrum genus, a distant cousin of garden-variety rhubarb, and its seed is the plant’s strong point. The buckwheat seed has a three-cornered shell that contains a pale kernel known as a “groat.” In one form or another, groats have been used as food by people since the 10th century b.c. Nutritionally, buckwheat is a powerhouse. It contains a high proportion of all eight essential amino acids, which the body doesn’t make itself but are still essential for keeping the body functioning. In that way, buckwheat is closer to being a complete protein than any other plant source. Whole white buckwheat is naturally dried and has a delicate flavor that makes it a good stand-in for rice or pasta. Kasha is the name given to roasted hulled buckwheat kernels. Kasha is toasted in an oven and tossed by hand until the kernels develop a deep tan color, nutlike flavor, and a slightly scorched smell. Be aware, however, that buckwheat is sometimes combined with wheat. Read labels carefully before purchasing buckwheat products. Millet (WF/gluten-free): Millet is said by some to be more ancient than any grain that grows. Where it was first cultivated is disputed, but native legends tell of a wild strain known as Job’s Tears that grows in the Philippines and sprouted “at the dawn of time.” Millet is still well respected in Africa, India, and China, where it is considered a staple. Here in the United States, it is raised almost exclusively for hay, fodder, and birdseed. One might consider that to be a waste, especially when considering its high vitamin and mineral content. Rich in phosphorus, iron, calcium, riboflavin, and niacin, a cup of cooked millet has nearly as much protein as wheat. It is also high in lysine—higher than rice, corn, or oats. Millet is officially a member of the Gramineae (grass) family and as such is related to montina. Montina (Indian Rice Grass) (WF/gluten-free): Indian rice grass was a dietary staple of Native American cultures in the Southwest and north through Montana and into Canada more than 7,000 years ago, even before maize (corn) was cultivated. Similar to maize, montina was a good substitute during years when maize crops failed or game was in short supply. It has a hearty flavor, and is loaded with fiber and protein. Quinoa (“KEEN-wah”) (WF/gluten-free): The National Academy of Science described quinoa as “the most nearly perfect source of protein from the vegetable kingdom.” Although new to North Americans, it has been cultivated in the South American Andes since at least 3000 b.c. Ancient Incas called this annual plant “the mother grain,” because it was self-perpetuating and ever-bearing. They honored it as a sacred food product, since a steady diet appeared to ensure a full, long life; and the Inca ruler himself planted the first row of quinoa each season with a gold spade. Like amaranth, quinoa is packed with lysine and other amino acids that make a protein complete. Quinoa is also high in phosphorus, calcium, iron, vitamin E, and assorted B vitamins. Technically a fruit of the Chenopodium herb family, quinoa is usually pale yellow in color, but also comes in pink, orange, red, purple, and black. Quinoa’s only fault is a bitter coating of saponins its seeds. The coating comes off with thorough rinsing prior to cooking, and some companies have developed ways to remove the coating prior to delivering quinoa to stores. Sorghum (milo) (WF/gluten-free): Sorghum is another of the oldest known grains, and has been a major source of nutrition in Africa and India for years. Now grown in the United States, sorghum is generating excitement as a gluten-free insoluble fiber. Because sorghum’s protein and starch are more slowly digested than that of other cereals, it may be beneficial to diabetics and healthy for anyone. Sorghum fans boast of its bland flavor and light color, which don’t alter the taste or look of foods when used in place of wheat flour. Many cooks suggest combining sorghum with soybean flour. Soy and Soybeans (WF/gluten-free): Like the ancient foods mentioned at the beginning of this section, soy has been around for centuries. In China, soybeans have been grown since the 11th century b.c., and are still one of the country’s most important crops. Soybeans weren’t cultivated in the United States until the early 1800s, yet today are one of this country’s highest yielding producers. Soybeans are a legume, belonging to the pea family. Comprised of nearly 50 percent protein, 25 percent oil, and 25 percent carbohydrate, they have earned a reputation as being extremely nutritious. They are also an excellent source of essential fatty acids, which are not produced by the body, but are essential to its functioning nonetheless. Teff (WF/gluten-free): Considered a basic part of the Ethiopian diet, teff is relatively new to Americans. Five times richer in calcium, iron, and potassium than any other grain, teff also contains substantial amounts of protein and soluble and insoluble fiber. Considered a nutritional powerhouse, it has a sweet, nutty flavor. Teff grows in many different varieties and colors, but in the United States only the ivory, brown, and reddish-tan varieties can be found. The reddish teff is reserved for purveyors of Ethiopian restaurants, who are delighted to have an American source for their beloved grain. A Word About Sprouted Grains Some people believe that “sprouted grains,” even ones that contain gluten such as wheat, are gluten-free—not true! The sprouting process sparks a chemical reaction that begins to break down gluten, so some people who are slightly sensitive to gluten may find that they can tolerate sprouted grains better, but too many of the peptides that are reactive for celiacs are still present, so sprouted grains are not safe for people with celiac disease or gluten intolerance.
  3. This article originally appeared in the Autumn 2003 edition of Celiac.com's Journal of Gluten-Sensitivity. 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.”
  4. The key to gluten-free cooking is simple: take a little bit of homework on your part, a dash of extra effort, and dump in a whole lot of creativity - voila! You're a gluten-free gourmet! But some of the greatest culinary challenges are for those meals-on-the-run, which seem to be the most common kind sometimes. Kids with Celiac Disease has extensive menu suggestions for all meals and snacks, but the following is a short excerpt of on-the-go snack ideas: Chips There are many flavors of gluten-free chips available at grocery stores! string cheese Taquitos, quesadillas, tacos, tamales (made with corn tortillas - they travel well) Nachos Corn Nuts Raisins and other dried fruit Chex mix There is a gluten-free cereal available at many grocery stores or health food markets thats just like Chex--make the mix as you would Chex mix. Popcorn Cheese cubes with toothpicks in them and rice crackers Fruit rolls Lettuce wrapped around ham, cheese, turkey, or roast beef Rice cakes (check with the manufacturer; not all are gluten-free) Hard-boiled eggs or deviled eggs Applesauce Apples dipped in caramel or peanut butter (if youre sending apples in a lunchbox, remember to pour lemon juice over the slices; that will keep them from turning brown) Individually packaged pudding Jello Yogurt Fruit cups (individually packaged cups are great for lunchboxes) Fruit snacks (like Farleys brand) High-protein bars (e.g., Tigers Milk, GeniSoy) Nuts Marshmallows Trail mix Combine peanuts, M&Ms, dried fruit, chocolate chips, and other trail mix items for a great on-the-go snack. - Beware of commercial trail mixes--they often roll their date pieces in oat flour. The occasional candy bar or other junk food treat (see the next chapter for information on safe junk food)
  5. I get hundreds of e-mails each month from parents of kids newly diagnosed with celiac disease or beginning the gluten-free/casein-free dietary intervention program for autism or ADHD. I thought it would be helpful to share some of these e-mails with you... Dear Danna: My four-year-old son is autistic, and were trying the gluten-free/casein-free dietary intervention program. There are no health food stores near me, so I have to drive an hour to get all of his food. Also, its very expensive. I dont know if we can afford this diet. Do you have any suggestions? Lisa L. Dear Lisa: Dont feel locked into shopping at health food stores. With the exception of baked goods and mixes (bread, cakes, cookies, etc.), you can do most, if not all, of your shopping at a regular grocery store. You can even buy generics! The first thing you need to do is become familiar with the safe and forbidden ingredients. To learn whats allowed and whats forbidden on the gluten-free diet, there is an excellent list on www.celiac.com -- you may want to print it out and take it to the store with you. Then learn to read labels carefully. If the ingredients appear to be okay, call the manufacturer (theres usually a toll-free number on the package - I bring my cell phone into the store with me so I can call before I buy) to confirm that the product is, in fact, gluten-free/casein-free. Youll find that the list of things he can eat is a lot longer than the list of things he cant! Happy shopping.... Dear Danna: My daughter is six and has always had terrible diarrhea. My brother and I both have celiac disease, so I figured she does, too. I dont want her to have to go through all the testing, so Im going to put her on a gluten-free diet and see how she responds. How soon should we expect to see improvement? Pam F. Dear Pam: I know its tough to handle the thought of putting our kids through testing, but proper testing is essential. Your daughter must be on a gluten-containing diet in order for testing to be accurate, so I would urge you to get her tested quickly, before putting her on a gluten-free diet. Id recommend doing the antibody screen (a blood test) first; if its positive, Id encourage you to have an intestinal biopsy done on her. Believe me, I know its hard to put our children through these tests, but its important that you know for sure, and proper testing is crucial. Dear Danna: I suspect my nine-year-old nephew has celiac disease, but the doctors wont test him because hes in the 70th percentile for height and weight. He has gas and bloating, and occasional bouts of diarrhea. My brother (his dad) had celiac sprue as a child, but doctors told him he outgrew it. Drew S. Dear Drew: First, people dont outgrow celiac disease (celiac sprue). Decades ago it was thought that they did - but now we know that celiac disease is a lifelong condition (sometimes symptoms may appear to fade away, but damage is still being done to the small intestine). Your brother should be properly tested (testing is much better now than it was when he was a child). If he does have celiac disease, your nephew is at greater risk for having it, too, since celiac disease is a genetic (inherited) condition, and youre right to suspect it. Sometimes doctors are reluctant to test for celiac disease - its extremely important to demand testing - if the doctor wont test, find one who will. (By the way, my son was in the 75th percentile for height and weight when he was diagnosed - some adult celiacs are actually overweight.)
  6. This article originally appeared in the Autumn 2005 edition of Celiac.com's Journal of Gluten-Sensitivity. You’ve all heard the joke proclaiming that “denial is not a river in Egypt.” No, it’s not. What it is, though, is a very real issue for many, if not most people who have been diagnosed with celiac disease or gluten sensitivity. There are a couple of types of denial—the first type affects us—while the other type affects those around us. When We’re in Denial Many people who are diagnosed—or when their kids are—go through some type of denial. It usually occurs at a few key times after diagnosis—and for a few different reasons, here are some examples: Immediate denial—the diagnosis isn’t right. Nope. Couldn’t be. I don’t know anyone who has that. I don’t even know what gluten is. I’ve never heard of celiac disease. I don’t have symptoms…my symptoms are mild. It’s just lactose intolerance, I’m sure. I don’t have diarrhea, so I couldn’t have that. I’m overweight, and all celiacs are skinny. My results were inconclusive. Someone must have made a mistake. All of these thoughts can be symptoms of denial. A few weeks into the diet—I don’t think that diagnosis was right. This is when the reality of doing this for the rest of your life sets in. One angel (the good one, of course) sits on one shoulder whispering, “You know you need to stay gluten-free—keep it up—you can do it! Mmmm, yummy cheese on this gluten-free toast. The other shoulder is home to the Devil-in-Denial: “No way are you going to another happy hour and order wine and celery sticks while all the other guys are drinkin’ beer and deep-fried stuff. You don’t have no stinkin’ intolerance. Come on—just one beer...and one piece of pizza. It won’t hurtcha. No stinkin’ intolerance…” This is really just a period of ambivalence, hoping beyond hope that you don’t really have this condition, choosing to lean toward believing you don’t. Danger zone: I never had that. The most dangerous type of denial occurs several months into the diet, when all of a sudden you realize you feel so good that you don’t even remember the last time you felt bad. That’s when people often think, “I knew I just needed a little bit of time to get over that bug I had! I feel great. I’ll bet I never even had anything wrong with me.” When Others are in Denial Then there’s the type of denial that our family members and loved ones express. Ask anyone who is gluten intolerant or has been diagnosed with celiac disease if they have relatives who won’t be tested, and chances are, you’ll get a surprised look as though you just guessed what color of underwear they’re wearing, and a “yeah, how did you know?” Because we all have them. Well, most of us do. Why is it so hard for our relatives to believe they might have this? It is, after all, one of the most common genetic diseases one can have—and it does run in the family. Yet we’ve all heard comments like: No, I don’t have that (blunt, bold, and full-on denial). I don’t think I need to be tested (oh, really, and that would be because….?!?) I was tested once, and the tests were negative (remember, once-negative does not mean always negative—also remember there are false negatives). I was tested, and my results were inconclusive, so I don’t think I have it (inconclusive may be a euphemism for mildly positive). I don’t have any symptoms (oh, really? There are about 250 symptoms, and you have NONE?) My symptoms really aren’t that severe; I can live with them (so you’ll just wait till you’re really sick and doing long-term damage to start trying to improve your health?). I couldn’t do the diet anyway, so I’m not going to bother being tested (now there’s a rational argument for you). Bottom line is they don’t want to have celiac disease, or they don’t want to give up gluten. Some of your relatives may even refuse to believe you have it. I’ve met many people with celiac disease who have been accused of being hypochondriacs or neurotic.The problem with denial is that it justifies eating gluten. When you have this epiphany “realizing” that you don’t have celiac disease or don’t need to be gluten-free, it’s tempting to run, not walk, to the nearest Krispy Kreme outlet. Resist the temptation. If you’ve been on the diet for awhile, then yes, you feel great, but it’s because you’re not eating wheat or gluten, not in spite of it. The danger in testing the waters is that you may not have any reaction when you do, and then you’re likely to jump to the obvious (by which I mean “desired”) conclusion and confirmation that you never needed to eliminate wheat or gluten in the first place. If you still wonder whether or not you have a medical reason for cutting gluten from your diet, here are a few things you can do to help solidify things in your mind: Get properly tested. Get a second (or third) opinion. Talk to other people who have been diagnosed with the same condition about your symptoms and your feelings of denial (chances are they’ll grin and say, “Yep, I felt that way at one point, too”). Write it down: List your symptoms, the symptoms of the condition, and how you feel if you’ve been following the diet. Sometimes seeing it in writing is the just the proof you need. Denial, by the way, is one of the most compelling arguments in support of proper testing and diagnosis. If you’ve been confirmed with a diagnosis, you may be tempted to fall into a state of denial, but it’s going to seem pretty silly, even to you.But also keep in mind that if you’ve been tested and your results were inconclusive or negative, you may need to consider re-testing or other alternatives. The tests have changed over the years, and maybe your tests were done long ago. There are also false negatives; and you can be triggered at any point in your life, so just because you were negative once doesn’t mean you’ll be negative again. And finally, there are people who are negative on all of the tests, yet their health improves dramatically on a gluten-free diet. Go figure. Remember, if it looks like a duck, walks like a duck, and quacks like a duck, it’s most likely a duck, even if you wish it were a pigeon.
  7. If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two aspirin and Keep away from children. The transition from summer to back-to-school is paradoxical. On one hand, summer means sleeping in, adventuresome vacations, evenings free of homework and obligatory assignments, and a chance for parents to take pleasure in their kids carefree, relaxed summer schedule (or lack thereof). On the other hand, mantras like, Im bored, Are we there yet? Theres nothing to do here, and the non-stop sibling bickering that seems to escalate when one child dares to breathe the same air as another has some parents singing, Its the most wonderful time of the year a good four months before Christmas. But its not always the most wonderful time of the year. For parents whose children cant eat gluten, sending kids to school can create an entirely new dimension of anxiety that extend far beyond the typical back-to-school blues: What will he eat for lunch? What if there are birthday parties and my child cant participate? Will kids make fun of him? Will the teacher take time to understand his condition? What if he eats the Play Doh? How can I make this easier for him? This is harder on you than it is on your child If your child is newly diagnosed with celiac disease, or is new to the gluten-free diet, I know youre thinking, Oh, no its not! She just doesnt understand how hard this is. When I speak at conferences and tell parents this is harder on them than it is on their kids, I inevitably have one or two - always the parents of newly diagnosed celiac kids - who respectfully (and usually temperamentally) disagree. They tell me I dont understand. Believe me, I do understand. But also believe me that this is harder on you than it is your child. Its harder, because of the very nature of being a parent. We love our kids so intensely that every pain they experience hurts us ten times more. Nothing breaks our hearts more than to know that our children may experience heartache. But remember, one of our most important jobs as parents is to teach our children how to deal with unpleasant experiences and emotions. As Anne Bronte said, If you would have your son to walk honorably through the world, you must not attempt to clear the stones from his path, but teach him to walk firmly over them. Tips to make it easier Give your child control of his diet. Yep, even if hes just two years old. Anyone who has heard me speak or has read either of my books knows that Im an absolute nag about telling you to give your child control of his diet, because if he doesnt control his diet, his diet will control him. Educate your teachers and principal. Set a meeting with your childs teacher(s) and principal to explain your childs condition and diet. The best time to do this is a day or two before school starts for the year. The teachers are usually at school setting up their classrooms, but theyre not yet distracted with new students, parents, and classroom responsibilities. Provide the teachers, principal, and the school nurse, if you have one, with clear, concise written materials explaining celiac disease and your childs diet. Some people find it helpful to give the book Kids with Celiac Disease to the school, so that the nurse, teachers, and principal can more thoroughly understand the condition and diet. Make sure they understand the severity of accidental gluten ingestion. Remind them that they should contact you if there are any questions, rather than taking a chance. Lunches: use good judgment. Most of the time, the people in charge of preparing food for children in a preschool or school setting are already used to dealing with lactose intolerance, peanut allergies, and other dietary restrictions. Talk to the dietitian or person in charge of food preparation. Go over the menu plans, discuss the foods your child can and cant have, and talk about the importance of using clean utensils to avoid cross-contamination. If you feel comfortable with the persons understanding and acceptance of the diet, give them the opportunity to accommodate your childs special diet. You always have the option of sending in your own meals if you think its not working out. If you are interested in your childs legal rights to reduced-cost school lunches, see Kids with Celiac Disease under Section 504. Talk to the adult lunchtime supervisors. Kids will swap food. Its an age-old tradition, and its not likely to stop with your child. Aside from the likelihood of getting gluten, your child may end up hungry. Sometimes your childs goodies are better than the other childs, and it makes your child so proud that shell gladly give them all away, to be left with nothing. So the best you can do is explain to your child why she cant trade food with her buddies, and make sure the lunch area monitors are keeping an eye out for swappers. Out of snack and lunch ideas? See Kids with Celiac Disease. Its loaded with snack and menu ideas, many of which travel well in lunch boxes and bags. Give the teacher a stash of gluten-free treats. A large bag of Halloween-sized individually wrapped candies works well, and because theyre individually wrapped, the teacher can keep them in a cupboard without the threat of ant invasions. Let the teacher know that these treats are to be used any time there is a special event during which treats will be served. Make sure the treats are your childs favorite; you dont want him feeling like hes being short-changed. Get a schedule of classmates birthdays and scheduled holiday parties. Teachers are glad to provide you with a listing of everyones birthdays. This way you know in advance when there will be parties. You can coordinate with the other childs parent, or send your child in with her own cupcake or treat. If theres a surprise event, your child always has the stash of candy youve given the teacher. On your childs birthday, bring a popular gluten-free treat for the entire class. Its best not to risk celebrating your childs birthday with gluten-free cupcakes. Its possible that everyone in your childs class might like your homemade gluten-free cupcakes. On the other hand, there may be one kid who, for whatever reason, takes one bite and spits it across the classroom, declaring, What IS this stuff? You can bet your child wont forget that incident for a very long time. Its best not to risk it. Instead, bring in ice cream bars or ice cream sundaes. Or, if you cant do frozen foods, bring cutely decorated candy bars or goodie bags filled with candy (brands that everyone knows). It will bring your child immense pleasure to share treats with the class that she can eat too (and kids like that stuff better than cupcakes anyway!). Of course, you will want to be sensitive to any of your childs classmates who might have peanut or other allergies, and choose treats that everyone in the class can enjoy. Ask for liberal restroom privileges. Many teachers restrict the number of times children are allowed to go to the restroom, or they ask children to wait until a more appropriate, less disruptive time. Let the teacher know that your childs condition may require a hasty trip to the restroom, and that he should under no circumstances be restricted from going. You may even want to establish a little code between your child and her teacher, so that he can inconspicuously dismiss himself. Its a little less embarrassing than having to ask. Consider talking to the parents at the parents-only back-to-school night. Most schools have a back-to-school night for parents only. This is a great time to talk to the other parents about your childs condition and diet. Not only will you be helping them to understand and accommodate your childs diet, but you will be educating dozens more people about celiac disease - something we should all be doing on a regular basis. Dont be mad when people dont accommodate your childs diet. Its going to happen. Someone will have surprise treats for the class that your child cant eat, and the teachers secret stash will be empty. Or someone will decide its baking day, and your child will be the only one not sampling the goods. Dont be annoyed, offended, or angry. These people arent intentionally trying to leave your child out, nor are they being insensitive. They simply forget sometimes! Most importantly, remember that your child is learning from your reactions. He will be in situations like this for the rest of his life - teach him to be gracious, politely declining the treats offered to him, and to accept the fact that this is just one of those little stones in his path of life that hell need to learn to step over...with a smile and the knowledge that people generally mean well.
  8. This article originally appeared in the Summer 2002 edition of Celiac.coms Scott-Free newsletter. Copyright © 2002 Scott Adams. All rights reserved worldwide. Celiac.com 07/28/2005 - Being gluten-free shouldnt change your summer plans. For a kid, absolutely nothing compares to the excitement of counting down those last few days before school is out for summer, and life goes from routine and imprisoning to lazy and carefree. Thats right—sing it now—schools out for summer! We parents, admittedly, have some mixed emotions about summer break. We eagerly await the mornings free of chaos and last-minute-I-have-nothing-to-wear tantrums, evenings without battles over homework, and afternoons when kids will have more time to play, and maybe even to help around the house and yard (a mom can dream, cant she?). But summer break is a catalyst for new battles, such as trying to explain to our kids that yes, it is your summer vacation, and yes, it is supposed to be relaxing, but 16 hours of television is still too much. The first few days are what I call freebies. We all enjoy the lack of structure, allowing our little ones to sleep as long as theyd like (but why is it that on school days they whine that they could have slept until noon, and during summer break theyre up at the crack of dawn?), and even buying into the oh-so-well-presented argument that this is just the first (second, third) day of vacation, and its the only day theyll watch TV all summer—promise! Energized by the contagious enthusiasm of summer break, we pack weeks worth of fun into the first few days, and revel in every minute of family freedom. And then...by about day four...you hear those dreaded two words that can, in and of themselves, induce critically high blood-pressure levels faster than anchovies on crackers: Im bored! Most parents go into the summer with good intentions and the best-laid plans for staving off the boredom blues. Fun-but-educational math and science workbooks, fun family fitness programs, and a well-stocked arts and crafts cabinet can sound like a good idea, but kids (and adults!) just want to have fun. The difference is that adults have responsibilities and obligations, and cant usually put our lives on hold for three months. They, however, can—and should. But my kids are gluten-free.... Oh, good point. That just means you may have to be a smidge more creative, but basically, if your child cant eat gluten, your options for battling boredom are just the same as everyone elses. Yep. Just the same. You may have to be a little more creative, and youll undoubtedly need to spend time educating those around you. But its well worth the time and energy to provide your child with some of lifes greatest summer experiences and memories. You may want to consider summer camps. Both day and away camps offer tremendous opportunities and experiences. There are some wonderful specialty camps for celiac kids, but dont feel that your options are limited to those. Do you think its too hard because of your childs diet? Think again! Day Camps/Away Camps—Gluten-Freedom! Sending your child away to camp is difficult. Oh—dont misunderstand me—its not difficult because of the diet. Its saying good-bye thats the hard part! Whether you choose day camps or away camps is up to you. From a dietary standpoint, the concept is the same. You may want to take all the worry out of it and send your child to a camp specially designed for celiac kids. Three are listed at the end of this article. But dont think youre limited to specialty camps. You can send them to any camp if you keep a few important things in mind: Educate the counselors/cooks in advance. If possible, meet with the head counselor in person to discuss your childs dietary requirements. Ideally, you should meet with the nutritional director or chef, too. Youll probably be surprised at how receptive they are. Most camps are accustomed to accommodating conditions such as diabetes or severe allergies, and are glad to learn the intricacies of the gluten-free diet. Make sure you give them plenty of time to make arrangements for your childs dietary needs. Meet several weeks in advance so they can plan, prepare, understand, and adapt menus. Remember to discuss preparation techniques, so they understand how to avoid cross-contamination during preparation and serving. Send reference information. Make sure the counselors and cooks have printed copies of safe and forbidden food lists. They can be found at Celiac.com, or send them with a copy of Kids with Celiac Disease. These resources will be important if there are questions about ingredients or special treats, and if they take the time to read more about celiac disease, you will have educated someone on the subject, and that is also important. Make sure your child understands his diet. If youve read Kids with Celiac Disease or heard me speak, you know that Im a downright nag when it comes to giving your child control of his diet. Its crucial! But in this case, its also key to ensuring a safe and enjoyable camp experience. Remember, if you dont give your child control of his diet, his diet may control him. Send food. Dont rely upon the camp to provide specialty gluten-free foods like bread and pasta. Theyre expensive and difficult to get, but more importantly, its not up to others to accommodate your childs diet (another "nagging point" of mine). Be sure to send mixes for cookies, brownies, and other treats, if they have the facilities to prepare them. These days, the specialty mixes you can buy are so good that your childs treats are likely to be the hit of the camp. More than simply a great way to beat the summertime boredom blues, sending your child to camp can be a huge growing-up experience. Oh—and the kids will do some growing up, too!
  9. This article appeared in the Spring 2005 edition of Celiac.coms Scott-Free Newsletter. Celiac.com 06/08/2005 – Theres no point in enjoying the improved health and vitality youll experience on a gluten-free diet if youre just sitting at home pining away for excitement because youre afraid to venture too far away. You have to live life to its fullest—you should be livin la vida loca! Theres no reason whatsoever to limit or, worse yet, give up travel because of this diet. Traveling wheat-free/gluten-free might be a little intimidating at first, but really, it just takes a little more planning, and sometimes an extra suitcase or two. Pre-Travel Checklist Before you leave, research your destination: Check with a support group in the area youre visiting to see if they have a list of celiac-friendly restaurants or grocery stores. Also search the St. Johns Celiac Listserv archives for frequent posts about gluten-free-friendly restaurants. You might want to go to the Internet and look up your destination city to see if they have one or more health food stores. If they do, call the store(s) and ask what gluten-free products they carry—if you have a favorite product, ask them to order it for you before your trip so they will have it in stock when you arrive. Be aware of legal considerations when crossing borders: Some countries have laws about what foods can be imported. Make sure you know what the laws are, and dont try to bring foods with you that might be confiscated. My family and I had an – umm – interesting experience at the Mexican border when we brought gluten-free pancake mix in an unmarked, vacuum-sealed plastic bag. Know the language (at least key words): Learn at least a few key words of the language spoken in the country youll be visiting. Make sure you can say wheat, flour, and other key words. Bring restaurant cards written in the language(s) of the country youre visiting (see www.celiactravel.com), or use translation software to create your own. Ask for rooms with a kitchenette, or stay in a condo: Even a small kitchenette with a microwave, refrigerator, and sink will make your life a little easier. Ship food to yourself: If youre traveling a long distance or are going to be gone for a long period of time, consider shipping some of your favorite products to your ultimate destination so theyre waiting for you when you arrive. Carry a "kitchen in a suitcase": If youre accustomed to making your breads, cookies, and other baked goods from the mixes that you order online or find in specialty stores, bring them with you, as it may be difficult to find them at your ultimate destination. Bring your specialty tools or appliances, too, like your bread slicer, if you plan on cooking while youre away. Grab your gadgets: Manufacturers offer some ultra-convenient travel gadgets these days, even for the traveling eater. Most sporting goods stores carry a small refrigerator (there are several brands) that plugs into the cigarette lighter of your car, making it easier to bring yogurt and other perishables on long drives. And we all know how toasters can present a problem since "regular" toast seems to spray its crumbs everywhere, contaminating them for gluten-free eaters. A travel toaster available on the Internet: (www.fsmarketplace.company.uk/traveltoasters) eliminates the worry—just take your own and youre set. BYOF: Even gluten-free bread travels well if you slice it and pack it in a hard plastic storage container. Hard-to-find cereals, pretzels, and favorite treats—even pre-baked frozen cookies—make great snacks en route or when you arrive. Dont forget to pack food for the trip itself, as well as food for your stay at the destination. There are grocery stores everywhere you go: When you arrive at your ultimate destination, stop in at the local grocery store and stock up on some of the basics. Dont forget to buy aluminum foil and resealable bags, which work well to store leftovers from restaurants, or any foods that you may have brought with you. Remember your restaurant rules: Use the tips mentioned in my books or in past issues of Scott-Free for eating out at restaurants, since youll probably be eating out more than you do when youre at home. If youre traveling to certain places in Europe, you might be pleasantly surprised to find that in some countries like Sweden McDonalds offers two types of hamburger buns: gluten-free and "regular." Getting There When planning how and what youre going to eat on your trip, you have to first decide where youre going and how youre going to get there. How much and what you bring depends on whether youre taking planes, trains, or automobiles. Driving: Driving allows you the most flexibility, and is easiest when youre trying to accommodate a restricted diet. If youre driving in the United States, there will most certainly be national fast-food chains all along the way. Even if you dont want to rely on greasy burgers and fries as a staple for your entire drive, you know that you have a backup—just in case. National restaurant chains (even those that are not of the fast-food, greasy-burger variety) have branches in all major cities—find out which restaurants are along your driving route (you can check www.mapquest.com or a similar Website), and check the restaurants Web sites or contact them for their lists of wheat-free/gluten-free products (this is where your three-ring binder with restaurant lists that you leave in the car comes in handy). There are also commercial gluten-free restaurant guides available, such as the one at www.celiac.com. Most important, BYOF. You will probably bring snack foods to munch on while you drive, so just make sure youre loaded with snacks that are easy to eat in the car, travel well, and of course, meet your dietary restrictions (and dont forget the paper towels or wet wipes!). Flying, cruising, and riding the rails: Theres less flexibility in how and where you can eat when youre at the mercy of a commercial airliner, ship, or train—but you still have a number of options. Many commercial airlines offer a selection of specialty meals, including gluten-free ones. Be careful, though, and read the labels if the food has them, because sometimes our gluten-free meals have come with fluffy, doughy bagels (that obviously arent gluten-free). If mistakes are made, dont be mad. They tried, and at least they considered having a gluten-free meal as an option. Be glad they made the attempt, and consider writing a polite, gratuitous letter to the food supplier offering information on whats gluten-free and what isnt. These days, airlines restrict the number of carry-on bags, so youll have to be more efficient in packing snacks and meals for the flight. Snack items that you might include in a sack lunch usually make good take-along foods for the airplane. Cruise ships always have executive chefs. Theyre accustomed to accommodating restricted diets, some of which can have dangerous consequences if mistakes are made, so they take the subject very seriously. By contacting the administrative offices of the cruise line several weeks in advance, you can arrange for the chef to provide you gluten-free meals throughout your cruise. Trains are tougher, since most of the foods found in café cars are usually along the lines of packaged sandwiches, croissants, pastries, and other oh-so-not-nutritious goodies. I highly recommend bringing food on the train, and not just because of your restricted diet, if you know what I mean.
  10. This article originally appeared in the Summer 2003 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 07/05/2010 - When “our product isn’t gluten-free” doesn’t necessarily mean “our product isn’t gluten-free” You’ve found a food you’d really like to eat. You’ve read the label, and it looks as though the product might be gluten-free. You’re drooling! You can dig in, right? Wrong. It’s a good idea to call the manufacturer to confirm that there aren’t hidden sources of gluten. Years ago, when we would call manufacturers and ask them if their products were gluten-free, they would either suspect us of making a crank call and hang up, leave us on “hell-hold” for 35 minutes while they “checked” (a euphemism for when they put you on hold and hope you hang up), or respond with a confident, “Oh no, honey, there’s no sugar whatsoever!” Before you bother calling the manufacturer, read the label. If there is an obviously unsafe ingredient, don’t waste your time or theirs. Tune in to the person on the other end of the phone. Do they sound like they understand what you’re talking about? Are they giving you conflicting information? Can you trust what they say? Fortunately, most product labels have a toll-free phone number listed on the packaging. I highly recommend carrying your cell phone in the grocery store with you, so that you can call quickly while you’re still there—before you buy a product. These days, most customer service representatives actually know what we’re talking about most of the time, and can offer a knowledgeable answer that instills confidence that the answer is accurate, albeit sometimes not all that helpful. When you call a company to find out if its product is wheat or gluten-free, you’ll get one of four responses: No, our product is not gluten-free: Do not interpret this as meaning, “No, our product is not gluten-free.” I realize that’s what they said, but it may not be what they mean. Probe deeper by asking, for example, “Can you tell me what in your product has gluten in it? I read the label and didn’t see anything questionable.” One time when I asked this, the woman told me it was “whey” that contained gluten. Penalty flag! Whey doesn’t contain gluten! This is when you need to realize that you’re talking to someone who doesn’t understand the concept, and you should ask to be transferred to a quality control supervisor. Sometimes this response is accurate, and either an ingredient wasn’t clearly called out on the label (unfortunately, this still occurs from time to time), or you were calling about a questionable ingredient only to find out it’s a good thing you called. We can’t verify its status: Translation: “It’s wheat-free/gluten-free, but we’re covering our rear ends because we don’t want someone to sue us.” Sadly, in our litigious society, it may actually be a founded fear that they have. Of course, this response—”we can’t verify its status”—could actually mean what it says—that they can’t verify the status. Usually they’ll tell you this is because they get their additives from other sources, and even though they claim to be gluten-free, Company A doesn’t want to be responsible in case Company B used gluten. The risk factor in either case is probably low. Every now and then, this response is given because they have an “If we tell you what’s in our product, we’d have to shoot you” mentality. Assure them that you’re not trying to steal their oh-so-treasured secret-sauce recipe, but that you have a serious medical condition that requires you to know if there are certain ingredients in the food you eat. Sometimes you just can’t get an answer, in which case you fall back to the golden rule: When in doubt, leave it out! Yes, it is gluten-free: This doesn’t necessarily mean, “Yes, it is gluten-free.” You have to judge for yourself whether or not they truly understand the concept. Sometimes they’ll follow it up with, “There are no sources of wheat, rye, or barley, and there are no questionable additives. Therefore it’s safe for someone with celiac disease, gluten intolerance, or wheat allergies.” Ah, you just want to kiss these people. Other times, when pressed, they get squirmy. If you say, for instance, “Oh, okay, then I can assume the modified food starch is derived from a non-gluten source?” and they give you an audible “blank stare,” you might want to dig a little deeper before trusting their answer. Huh? Thankfully, this isn’t a common response anymore, but it does happen. Politely try to explain what types of ingredients might be in the product you’re calling about, and if it doesn’t “click,” ask to speak to a quality control supervisor or nutritional expert. Of course it’s helpful and sometimes necessary to be specific in some cases, saying, “I’m calling to see if this product is gluten-free, which means it doesn’t contain wheat, rye, or barley.” Not only is this clarification helpful for them, but you may have educated one more person about gluten. Many times, one of the added benefits of calling, even if the product you were calling about turns out not to be okay, is they’ll offer to send you a list of their wheat-free/gluten-free products (sometimes they even toss in a few coupons). Always take them up on it, and save the lists for future reference. It’s important to learn from your answers. If there was an ingredient on the label that you had never heard of, and you talked with a knowledgeable customer service representative who told you that product was gluten-free, take note. That means the ingredient is gluten-free, too. Add it to your own copy of the safe and forbidden list, and remember for future label-reading experiences. Excuse me for a moment while I put on my Miss Manners hat, but it’s important to be polite, professional, and appreciative when you call manufacturers. Not only will you get much better service, but we need them! We need them to comprehend the gravity of our questions and to understand how important it is to be 100 percent sure that the answers they give us are accurate. We need them to realize that they can’t guess at their answers, and that we very much appreciate that they understand what we’re asking. Calling manufacturers can be a pain, for sure, but it’s an important part of living and loving the gluten-free lifestyle. Not only is it a good habit for you since ingredients change frequently, but it sends companies the message that if their labeling was clarified, we wouldn’t bother them so often! It also tells them that millions of people avoid wheat or gluten, and maybe they’ll think twice before using an ingredient that has a wheat source when they have the option to use one that is wheat and gluten-free. This article was partially excerpted from Danna’s book Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living.
  11. Danna Korn

    About Danna Korn

    About Danna Korn Danna Korn is the author of Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy Gluten-Free Children, published by Woodbine House; and Wheat-Free, Worry-Free: The Art of Happy, Healthy Gluten-free Living, published by Hay House. She has written dozens of articles on gluten-free living that have been published in national magazines and newspapers, and appears frequently on national and local broadcast media in an effort to raise awareness of celiac disease. Danna has been researching celiac disease since her son, Tyler, was diagnosed with the condition in 1991. That same year, she founded R.O.C.K. (Raising Our Celiac Kids), a support group for families of children on a gluten-free diet. Today, Danna leads more than 65 chapters of R.O.C.K. throughout the nation. She speaks frequently around the country to health care professionals, celiacs, parents of celiacs, parents of autistic kids involved in a gluten-free/casein-free dietary intervention program, and others on a gluten-free diet. Danna lives in Encinitas, CA with her children, Tyler and Kelsie.
  12. Our story began when our first child, a perfect baby boy, began to get sick. It started benignly enough, with more than just a touch of diarrhea, which the doctors attributed to the antibiotics he was taking for ear infections. When time was up on our allotted four-minute visit, we were told to keep an eye on it and call them if it didnt go away in a couple of weeks. What we were supposed to keep an eye on, Im not sure. The piles of diapers that we had to haul out every afternoon? The lovely rhinoceros-skin texture that my hands were assuming, thanks to the extra washings? Or maybe the water bill that had skyrocketed because of the additional laundry I was doing when the Pampers just couldnt accommodate the excess loads they were being asked to hold. In any case, they had told us to call if the diarrhea didnt go away in a couple of weeks, so we did. Apparently, what they meant to say was, well tell you to call if it doesnt go away just go get you out of our office feeling like we did something, but really wed rather you dont bother us because all were going to do is give you another obligatory four minutes listening to you whine and then tell you is that theres nothing wrong. Why cant people just say what they mean? Instead, I endured the heavy sighs of the receptionist who took it upon herself to play doctor and say, You mean youre bringing him in again just because of diarrhea? Well, yeah. Thats what I was told to do! Several heavy sighs and even an I-hate-neurotic-new-moms-snicker later, we had an appointment - for three weeks out. The second visit was, as I eluded to, an obligatory waste of time. After looking in Tyers ears, nose, and throat (did I lead you, Doctor, to believe that this problem was above his waist?!?), the doctor concluded that there was nothing to be concerned about. Oh, really? I guess its normal to be changing 22 diarrhea diapers a day? I dont think the doctor was amused when I offered to present him with a stool sample, since I was sure in the next ten minutes we would have one that we could examine together. No, I was sent away and told, once again, to call if the situation didnt improve in the next two weeks. Yeah, sure. Ill be sure to do that. It was with sadness and grief that I realized this pediatrician whom I had hand-selected after interviewing no less than 12 in the area, and who had offered a congratulatory hugs less than 12 minutes after Tyler was born, was not listening to me. It was time to find doctor-number-two. Sadly, our experience with doctor-number-two was a repeat of that with number-one. A quick looks in the ears, nose, and throat, followed by a declaration that we had a healthy baby boy sent my blood pressure skyrocketing. But what about the diarrhea I mentioned? I managed to ask with control worthy of the Nobel Peace Prize. Really, diarrhea is nothing to worry about unless the child is severely dehydrated and losing weight, I was told, as though I had the I.Q. of a water bottle. Well, Ive been force-feeding water to avoid dehydration, I explained, thinking that might make him realize that there was a reason Tyler wasnt shriveling up from thirst. Oh, good, he replied as he raced out the door to his next four-minute appointment. Keep it up and call me in two weeks if the situation hasnt improved. Ugh. After a few months, several hundred dollars worth of diapers, and cracked and bleeding hands, we switched to doctor-number-three. We chose a woman this time, figuring maybe some element of womans instinct or a maternal inkling would alert her to what we believed was a worsening condition. Well, hes in the 75th percentile for height and weight, she declared after looking in his ears, nose and throat. Certainly nothing to worry about with this bruiser, she gloated. Trying to be patient, hiding the clenched fists, and managing a smile that was as sincere as that of a politician running for office, I replied, But he used to be in the 98th percentile. Wouldnt that indicate weight loss, which could be a sign of something wrong? Oh, honey, dont be ridiculous! What do you want, a prize fighter? Hardy, har-har. I had a real Carol Burnett on my hands. Again, we were sent away and - you know the rest. And so it was. There was nothing wrong. Never mind that he had been loading up 22 diarrhea diapers a day for the last nine months - apparently he was just a poop machine. Never mind that his belly had grown distended to the point that he couldnt bend over and pick up his toys. Never mind that his arms and legs were skinny - hey, he was still in the 70th percentile for height and weight, and its not like I was trying to raise a prize fighter or anything. So it was without a care nor a complaint that I dragged my irritable, listless little Biafra baby into the office of doctor-number-four, a doctor to whom we were assigned when we changed insurance plans. After looking in Tylers ears, nose and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see if its ripe. My goodness, he said with that Im-alarmed-but-Im-a-doctor-and-dont-want-to-freak-you-out-so-Ill-smile-smugly-and-act-calm voice, Whats going on with his belly? I couldnt answer through the tears of relief. Relief turns to terror I never thought Id be so excited to be referred to Childrens Hospital. I called my husband with the good news. Sweetie, guess what?!? We have to go to the hospital! I announced as though we had just won the lottery. Never quite sure how to respond to my usually-overly-enthusiastic-and-not-always-sensical proclamations, he replied, as usual, with caution. Really? Is that a good thing? I guess in retrospect it wasnt a dumb question, but at the time it deserved, DUH! Were going to see the gastroenterologist! On the drive to the hospital, we sung the I love you song with such glee that it made Barney look like a candidate for Prozac. Were going to the hospital to see the nice doctor whos going to help us make you feel better, I sang to the tune of whatever I could come up with on short notice. Tyler, 18 months old then, sang too, and we practically danced into the doctors office for our first visit with the gastroenterologist. Somehow a three-hour wait in a doctors waiting room does a lot to dampen enthusiasm. Our gastroenterologist didnt even look in Tylers ears, nose or throat, a small favor for which I could have kissed him, even as tired and hungry as I was. He did do the honeydew thump on Tylers belly, and asked how long he had been experiencing diarrhea. Oh, about nine months now, I commented. Nine months? he asked. The large eyes and knitted eyebrows spoke for him, so he didnt have to finish his thought, which was obviously, Why did you wait so long, you oblivious, inexperienced nitwit? We were told that a variety of tests needed to be run. He tossed around names of these tests: upper G.I., lower G.I., ultrasound, serology, endoscopy, biopsy fecal fat, enzyme panel, WBC, and sweat test. Thinking maybe I had slept in those days during my Bio 101 classes in college and not wanting to admit it, I said, Oh, right. So that means youre testing for.... as though the condition was right on the tip of my tongue and I just couldnt recall it. He saved me the awkward silence that would have ensued and filled in the blanks. Were going to be looking at a number of possibilities: blood diseases, cancer, cystic fibrosis...that sort of thing. I thought I was going to faint. The bittersweet diagnosis After signing reams of release forms that we never read, and allowing doctors to poke, prod, anesthetize and scope our baby, we finally got a call from the doctors office asking us to come in for a consultation with the gastroenterologist. Well, cant you just tell me what it is on the phone? I asked. No, he wants you to come in, the receptionist told me. But is that a bad thing? Wouldnt he just call to tell me nothings wrong if my baby was okay? I began to panic. After a three-day wait in the waiting room (okay, it just seemed like three days because hours spent waiting in a 4 X 4 cubicle with an 18-month-old are automatically quadrupled in value), we finally saw the doctor and heard the words that would change our lives forever. Your son has celiac disease. Huh? Is that anything like a flu bug? Surely there was a pill we could give him that would make it all better. It simply requires a dietary change... Okay, so maybe we overdo the goldfish-shaped crackers a little - we can do without for a few weeks. ...he wont be able to eat gluten for the rest of his life. Back up the truck here, Mister. Rest of his life? Gluten? Is that anything like glucose? Because we can surely cut down on sugar.... In a state of shock, we were directed down the hall to the hospital dietitian. Without looking up, she put her hand out, presumably wanting the chart that we had been instructed to give to her. Still in a daze, we handed her the chart. Several seconds of silence passed - had she fallen asleep? Was she writing her grocery list? Had she forgotten we were there? Finally, she said, So you need information on the gluten-free diet, huh? Dont get many of those. Really? I asked. How many have you had? None. She handed us a crumpled blue piece of paper that had writing on both sides. The first side, filled with size-two font, listed the foods and ingredients we were to avoid. The other side had size 48 font, presumably in an effort to make the page look full, and was titled, Acceptable foods on the gluten-free diet. There were six items on the list. Our first shopping trip Still resembling a zombie, I realized I had an 18-month-old child to consider, and he had been through as much as we had, so I asked what he wanted to do. Get a tweat! Cwackews! he replied (translated to treat and crackers for those of you whose kids are over 12). Not a bad thought. We had to learn how to shop sometime, so off we went on our first gluten-free shopping expedition. Armed with our crumpled blue sheet, we started in the cracker aisle. Carefully reading labels, I was amazed and delighted to find that not a single package had gluten in the ingredients list! How easy was this going to be! Lest you think that I do have the I.Q. of a water bottle, you have to remember that I was till in a state of shock, topped off with a touch of denial. I consulted my trusty blue sheet and realized that flour was, indeed, buried in the size-two-font list of forbidden ingredients, and put back all the crackers I had tossed into the cart. We went up another aisle. Pretzels...nope. Bread...not even close. But Mommy, I just want a tweat. Tylers patience was wearing thin. In desperation, I picked up a bag of Fritos. Could it be? Really? Surely I missed something. No, it was true. Not a single gluten molecule to be found! Hallelujah. I grabbed seven bags and headed for home. Ten years later... The beauty of living with the gluten-free diet is that you learn to love the gluten-free diet. Not only is it a medical necessity in our family, but it is a healthy way of life. Sometimes when I think, If only I could not have to worry about making tonights meal gluten-free, Id make..... WHAT? What WOULD I make? Would I make macaroni and cheese out of a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now theres a healthy meal. We put so much emphasis on making healthy meals that we wouldnt do those things anyway (well okay, every now and then maybe!). We are so fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available. Customer service reps actually know what were talking about when we ask if their products are gluten-free. Cookbooks and resource books abound, as do support groups and seminars. Most of all, those who are diagnosed are the lucky ones. No longer do they have to wonder why theyre fatigued, depressed or suffering gastrointestinal distress; they can rest assured knowing their gluten-free diet is preventing them from being more susceptible to conditions such as intestinal lymphoma, infertility, and osteoporosis. Yes, this diet can be a pain, but follow the mantra and you will be liberated. No longer will the diet control you, but you will control your diet. So....all together now ... Deal with it; dont dwell on it!
  13. I'm a big believer in fun, especially when it comes to eating. And just because your child is on a gluten-free diet doesn't mean he or she should be deprived of one of life's greatest pleasures. It will require a little extra work on your part, but its well worth it. Don't think your choices are limited to carob and fruit-juice tofu, and don't limit yourself to the health food stores (unless that's your preference - I should have mentioned that I'm big on fun, but I'm also big on junk food; I think its an important part of growing up). Learn to read labels carefully, and to call manufacturers. Even if a label appears to be gluten-free, you should call the manufacturer to make sure there are no hidden ingredients, and to ask about manufacturing procedures. Many chocolate bars, for instance, are coated in flour to keep them from sticking to machinery and wrapping. More tips, additional information on gluten-free treats, and lists of gluten-free junk food can be found at www.celiac.com and in Danna's book, Kids with Celiac Disease.
  14. This article appeared in the Winter 2005 edition of Celiac.coms Scott-Free Newsletter, and is an edited excerpt from Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living. Celiac.com 01/11/2005 - Even the most seasoned wheat-free/gluten-free eater (forgive the pun—"seasoned eater") may feel a little uncomfortable venturing out of the home. Its true that your risk of getting unsafe foods does increase when you leave home, but most people agree that the life experiences of eating at restaurants while traveling, or even just the social aspects or convenience of eating at a restaurant on any given day or night, are well worth it. In reality, when you eat at restaurants, some chefs will "get it" and work to ensure a safe meal for you, and others wont. Going to restaurants isnt really about eating as much as it is the ambience, the company, and, well, okay—the convenience. Focus on those primary reasons for going to a restaurant, and make the food secondary, even if theres very little you can eat. If youve heard me speak or read my books, then youve followed my advice and stuffed yourself before you left the house, so youre not hungry anyway. Defensive Dining Its been said that the best offense is a good defense, which probably applies to restaurant excursions as well as it does to the football field. Im not encouraging you to be offensive; in fact, quite the opposite. Its not, after all, the waiters or chefs responsibility to accommodate your diet. If they do, be prepared to leave a big tip, because their job descriptions definitely do not include understanding the intricacies of this diet. Nor should you fill them in on all the minutiae surrounding the diet. A brief education is all they should need, because you should already have narrowed down the choices on the menu that look as though they might be safe, or at least may be prepared in a way that would make them safe. Its okay to ask that your food be prepared in a special manner—people do that all the time even when they are not on a special diet. Most important, you need to be aware of specific foods and ingredients to avoid when eating out. Some things are more likely to be okay than others, and you should make it easier on yourself by choosing items that are more likely to be wheat-free/gluten-free. Plan Ahead Your days of eating at Italian restaurants with ease are probably behind you (although many Italian dishes are made with polenta, which is gluten-free). Pizza joints: also not likely. Chinese: possibly. Dont set yourself up for disappointment by selecting restaurants that will fill you with frustration by the very nature of their menu selection. Instead, choose restaurants with a large selection, or choose a restaurant based on its ethnicity or culture because its likely to offer more wheat-free/gluten-free foods. Thai foods, for instance, are often gluten-free, since they use fish sauce instead of soy sauce for a lot of their marinades and seasonings (although some fish sauces can also contain wheat). Study your ethnic foods so you know the ingredients they contain and can make good choices when it comes to restaurant selections. Knowing what to order is just as important as knowing where to go. Consider, for instance, an American-style restaurant like Dennys or Sizzler. For breakfast, youre better off contemplating the eggs (beware: many restaurant eggs are from a mix that contains gluten), hash browns (be sure to check), and bacon (check again) than you are the Waffle-Mania, even if it is only $3.95. For lunch or dinner, you can almost always find a restaurant that will offer you a burger (no bun), fries, and a salad (no croutons). Be aware of things that are likely to be problematic. For instance, most sushi is okay, but some of the products, such as imitation crabmeat, usually contain wheat, while other sushi items can contain soy sauce, which usually also has wheat. Cajun cooking often uses beer to cook shrimp and other shellfish, and of course beer is off-limits on a gluten-free diet. Make it easier on yourself by choosing foods that are more likely to be safe for you. What you end up with may not be your first choice, and you may find yourself longing for the days when you could order from a menu with your eyes closed. Dont whine about what you cant have, and focus on the things you can. Remember, eating out isnt about the food. Its about the atmosphere, the company, and the fact that youre not cleaning up. Talk to the Waiter and Ask the Right Questions Sometimes talking to the waiter is an exercise in futility. If you realize this is the case, either order what you deem to be safest, order nothing at all, or leave. A cooperative waiter or waitress, on the other hand, is your first line of defense in keeping bad food away. Make friends. Be kind. Tip well. After youve picked what you think could be a safe menu selection or could be made into one, ask questions. Dont be shy; its not rude or uncommon for people to ask questions, even when theyre not accommodating a restrictive diet. Ask if the hamburger patty is 100 percent beef or if it has fillers; ask if the eggs are all-egg, or if they have fillers; check to make sure the fries arent coated with breading, seasonings, or anything else that would make them off-limits. Check sauces and marinades; even if you mention that you cant eat wheat or gluten, people rarely realize, for instance, that soy sauce usually contains wheat. Once youve made your menu selection, the waiter isnt dismissed. At this point it gets a little awkward because youve probably already asked a lot of questions, but there are a few more to ask, because how the food is prepared is also important. You need to make sure that the hamburgers arent grilled on the same rack as the buns, and that the croutons arent just plucked out of your salad, but rather that they were never put in. You even need to ask about the oil the fries are cooked in, because if theyre cooked with breaded foods, you really shouldnt eat them. At this point, even the most patient of waiters is likely to be giving you a stiff smile with that "Is there anything else youd like to know?" expression. Offer to talk to the chef, if it would make things easier. Chefs, although not often educated in the fine art of accommodating restricted diets, are usually interested in them nonetheless, and are usually quite fascinated when you talk to them about the wheat-free/gluten-free diet. Each time you talk to a chef, youre educating him or her and making it easier for the next wheat-free/gluten-free patron who comes along. Do Your Homework Many national chain restaurants have lists of their wheat-free/gluten-free products available by phone or on their Websites. Collect lists from your favorite restaurants and fast-food chains, and keep them in a folder for future reference. You may even want to consider putting them in a three-ring binder that you keep in the car. Once youve done all the work to find restaurants that work for you, by all means dont worry about getting in a rut. Theres nothing wrong with "tried and true" when your only other option is "guessed and now Im sick." Dont get too complacent, though, because just like products at the grocery store, menu items at restaurants sometimes change ingredients. Check frequently, and remember that even if you think its safe, if something makes you sick, dont eat it! BYOF (Bring Your Own Food) It probably wouldnt be too cool for a group of eight to walk into a lovely Italian restaurant, with everyone carrying their entire meal in a brown paper bag, simply to enjoy the ambience. But if you go to a restaurant and bring a small amount of food with you—even if its the main course—its certainly not rude. Some (but not many) restaurants have regulations about preparing food, and are allowed to serve only foods that theyve prepared. Most, however, have no problem if you bring in your own pizza and ask them to heat it for you. If you do bring your own food, make sure you its wrapped in aluminum foil to avoid contamination during the heating process. Pizza ovens, for instance, sometimes have convection fans that can blow the flour from other pizzas around the oven, contaminating yours. If you bring bread and ask them to toast it for you, theyre likely to put it in the slot of a toaster, contaminating it with "regular" crumbs and ruining your pristine bread. In that case, you might want to explain that it cant be put in a toaster, but if they have a toaster oven or broiler (that isnt blowing flour around), that would be wonderful. If youre asking them to microwave something, of course, theyll just remove the aluminum foil. The most important thing to remember if youre bringing your own food is to leave a big tip. Sprechen Sie Gluten? When eating at restaurants of different cultures and ethnicities, its a good idea to know the language, especially if the restaurant is staffed by people who speak a language other than your own. Learn the important words to best communicate your special needs. For instance, in Spanish the word for flour is harina, but that can refer to corn flour or wheat flour, so you need to know that the word for wheat is trigo, and corn is maize. Some restaurant cards come in a variety of languages. Additionally, some Websites offer translation capabilities. Tipping Im aware of the redundancy in my continuous references to tipping and the importance of being extra generous at tip-time, but I believe it bears repeating. When it comes to asking people to accommodate the gluten-free diet, it seems imperative that we express our gratitude to those who generously oblige our requests. As awareness of this diet increases over the next few years, it will be more common for restaurateurs to understand these restrictions and accommodate them. Anything we can do as a community to enhance their understanding and acceptance will benefit us all in the long run. Have fun! Now that youre armed with some basic restaurant realities, remember rule #1: Have fun! Dont live your life in a bubble just because you have a dietary restriction. Bon appetite!
  15. A must-read survival guide for parents, friends, teachers, and caretakers. Kids with Celiac Disease is a practical survival guide for families of children and teenagers with this lifelong digestive disorder. While it sounds as though it is only applicable to children with the condition, Kids with Celiac Disease is loaded with valuable information for people of any age - as well as for people on the gluten-free diet for reasons other than celiac disease. Written by the mother of a celiac child diagnosed in 1991, Kids with Celiac Disease is a compilation of 10 years of experience and research. Danna founded R.O.C.K. (Raising Our Celiac Kids) in 1991, and incorporated much of what she has learned from other parents into this book. Kids with Celiac Disease includes: Practical suggestions for dealing with school, sitters, birthdays, holidays and other unique challenges Menu and snack ideas Emotional and psychological implications How to talk with friends and family Eating out at restaurants Travel tips Up-to-date scientific, medical and nutritional information A resource guide listing contact information for hundreds of resources that are valuable to anyone on a gluten-free diet. Click here to order!
  16. Click here to view video Click here to view video Click here to view video Click here to view video Click here to view video Click here to view video
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