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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    GLUTEN-FREE FOR 12 YEARS: A 14-YEAR-OLD BOY'S PERSPECTIVE


    Danna Korn

    This article originally appeared in the Winter 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.


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    Celiac.com 10/04/2010 - When Tyler was diagnosed with celiac disease at the age of 18 months, I wanted desperately to talk to a kid––one who could talk––about what it’s like to have celiac disease.  Do you feel jipped?  Does it make you sad?  Do you feel “different” from the other kids?!?  I was heartbroken––grief-stricken––I had a long way to go before I would evolve into the cheerleader I hope I’ve become in helping people live––and love––the gluten-free lifestyle.

    Oh, sure, friends and family told me “it would be okay,” the way friends and family do in tough situations.  But I felt they were just placating me––after all, what did they know?  They hadn’t even heard of celiac disease before I had explained the diagnosis.  And to be honest, I didn’t care much at that time about what adults thought of the situation––I wanted desperately to hear from a kid: “Look at me––I turned out just fine!”

    That was nearly 13 years ago, and there weren’t any kids who had celiac disease––none that I knew of, anyway.  So we blazed our own trail, working hard to approach our unique challenges with optimism each and every step of the way.

    Recently, I was reminded of the way I felt when Tyler was first diagnosed, when a woman with tears in her eyes approached me after one of my talks.  “I know you talk about how we can all learn to live and love this lifestyle, and I appreciate your suggestions for raising happy, healthy, gluten-free kids––but,” she seemed shy and embarrassed to continue, looking at the floor as she asked, “would you mind if I talked directly to Tyler?”

    But of course!  How could I have forgotten?  That need to talk to a child who had been through it was so compelling at first––and now Tyler could talk!  Sure you can, was my automatic reply, knowing that my 14 (and-a-half) year-old-I-at-least-like-to-pretend-that-everything-you-do-annoys-me son would be less than thrilled to take the call. 

    I would love for Tyler to write an article telling you how celiac disease is no big deal in his life.  He did so a few years ago for my first book, “Kids with Celiac Disease,” when he wrote Chapter One:  “What it’s like to be a kid with celiac disease,” but that was when he was only ten.  That was before he turned into a teenager and had to start pretending not to want to do the things we ask him to do.

    The truth is that this has never been a big deal for Tyler.  We gave him control of his diet from day one, which I believe is crucial.  We have always maintained an optimistic, yet realistic approach, with Tyler and his non-celiac but oh-so-supportive sister Kelsie, her being our guiding light in terms of inspiration and positive attitude.

    One day, a few months after he had been interviewed on a local TV station, Tyler was approached by a woman who attended one of our R.O.C.K. (Raising Our Celiac Kids) parties.  I watched with curiosity and felt somewhat protective and guarded as this woman I didn’t know quickly approached him and took one of his hands in both of hers in what seemed to be an affectionate gesture.  “Tyler, you have changed my life,” she said boldly.  Then 13 years old, he did what most 13-year-old boys might do, and said nothing––shooting an anxious glance my way, looking for guidance, but I was as bewildered as him.  She began to get tears in her eyes as she continued.  “I’m 65 years old.  Three months ago, I was as sick as I could be.  I had been to dozens of doctors, and had a list of symptoms a mile long.  Everyone thought I was crazy––I even had to quit my job, because I was so sick.  I truly wanted to die.  Then I saw you on TV talking about celiac disease.  I insisted on being tested, and was positive for celiac disease.  I’ve been gluten-free ever since, and feel absolutely wonderful.”  With that, she gave him a bear hug, and he shot me a glance that I couldn’t read. 

    I’ve learned not to embarrass my kids (well, sometimes I do it intentionally, but that’s another story), so I said nothing, and Tyler went about his business.  Several minutes later, Tyler approached me with a beaming smile.  “Mom, now I know why you do this!  It feels really good to help other people!” 

    He has since decided that he’s blessed to have celiac disease, because it has provided him with an opportunity to reach out and help others––an act that even at his young age he realizes is as satisfying for him as it is for those he helps.  Quite a perspective for a teenage boy, if I may brag about him a little!

    So while I would love for Tyler to write an article about this, those of you who have teenagers understand that it would be easier to teach my dog quantum physics than to have him sit down and write an article––so you’ll have to take my word for it.  Thankfully, at this point, Tyler is a happy, healthy, gluten-free young man who thinks a lot more about baseball and his friends than he does about the restrictions of his diet.  Other kids, teens, and young men and women I’ve met over the years have been equally optimistic and inspiring.  So rest easy, parents––your kids will, in fact, be just fine…and I really do know this!


    Image Caption: Tyler is on the cover of Danna's book
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    Thank you.

    Yes, I am with Colette. Thank you. My 5 year old is in the process of being diagnosed, but they are 90% sure it is celiac. I am in the grief stricken stage.

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    Guest Lauren

    Posted

    My 15 month old son was diagnosed this past Tuesday. We had a wonderful pedatric GI who got us his diagnosis just 2 months after symptoms started showing (after a stomach virus is when his obvious symptoms began). We feel fortunate to know so early. More then anything I want to know what he will feel like as grows up with this disease. Our attempts are already to normalize this as much as possible and to not make him feel bad or weird to have celiac. My husband and we just had our blood tests today, and are eagerly awaiting our own test results and have completely de-glutened our home. This is quite a journey we have been on, and it has only just begun!

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    Guest Rebecca

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    My 15 month old son was diagnosed this past Tuesday. We had a wonderful pedatric GI who got us his diagnosis just 2 months after symptoms started showing (after a stomach virus is when his obvious symptoms began). We feel fortunate to know so early. More then anything I want to know what he will feel like as grows up with this disease. Our attempts are already to normalize this as much as possible and to not make him feel bad or weird to have celiac. My husband and we just had our blood tests today, and are eagerly awaiting our own test results and have completely de-glutened our home. This is quite a journey we have been on, and it has only just begun!

    Hi Lauren, as the mother of a 14 year old girl diagnosed with celiac at 3, I know instinct is to remove gluten from the house. Don't. Use the safety of your home as a teaching zone for your son. He will learn and be more comfortable with making choices as he gets older. It will become second nature to him.

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    Good insight; my nephew is 13 just diagnosed with celiac and even before this he only ate breads grilled cheese--no meats no veggies, as he has food texture issues. He says he will try new food items but then refuses. What can we do as a family to get him to eat before he gets severely malnourished? Any suggestions would be greatly appreciated.

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    Danna Korn

    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!

    Danna Korn

    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.

    Danna Korn
    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!

    Danna Korn
    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.


  • Recent Articles

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com

    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center