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    Learning to Decipher Customer Service-Speak by Danna Korn


    Danna Korn

    This article originally appeared in the Summer 2003 edition of Celiac.com's Journal of Gluten-Sensitivity.


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    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.

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  • Related Articles

    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.


    Danna Korn
    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.”


  • Recent Articles

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics