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    When Friends, Family or Loved Ones Just Don't Get It


    Danna Korn
    Image Caption: When Friends, Family or Loved Ones Just Don't Get It by Danna Korn

    This article originally appeared in the Winter 2006 edition of Celiac.com's Journal of Gluten-Sensitivity.


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    Celiac.com 04/30/2010 - The gluten-free lifestyle is a big part of who we are.  So when friends, relatives, and loved ones don’t get it—I should clarify—when they seem to choose not to get it—we sometimes get a little cranky.

    I know—I was reminded of how it feels when loved ones don’t choose to get it this past Thanksgiving when one of my relatives who shall remain nameless glutenized the mayo jar.  Now I realize it may seem petty to get tweaked about someone dipping a knife in a mayo jar—but it had gluten all over it, and worse yet, she did the same thing last Thanksgiving, and I threw a tizzy about it then.

    Realizing the first dip alone contaminated the entire jar (of course it was the club-sized jar that is the size of a small Volkswagen), there was no point in stopping her from doing it again.  But I watched incredulously as she taunted me, dipping the knife into the jar—then onto the (gluten) bread—over, and over, and over again.  How many gobs of mayo does one need on a piece of bread?!?  I found myself seething, and my blood boiled with every dip-and-spread motion; I swear she was doing it intentionally.

    Yes, I know I should have had a squeeze bottle handy, and I even write about that in my books. My mistake, but I also write about doing the “gob drop,” which is—as the name implies—the process of taking a gob of (insert condiment here) and dropping it onto said piece of gluten.  Using a separate knife, you spread.  It’s really not that tough.

    The bigger point here is that it made me wonder why, after fourteen years of going through this, she didn’t care more about our gluten-free lifestyle.  I spent about six minutes pondering this when I remembered that it’s not that she doesn’t care—maybe she does, and maybe she doesn’t.   The bigger point is that she wasn’t thinking about it at that moment—and that’s okay. 

    This is our lifestyle, and we love it.  Those friends and family who do care enough to call and make sure the meal they’re serving us is gluten-free are to be cherished.  Those who make a special trip to the health food store to buy a mix and make gluten-free cookies are to be downright hailed as saints.  Even those who make a beautiful gluten-free meal and then top it with teriyaki sauce (of the gluten-containing variety) because they don’t know any better are to be adored for trying.

    I write about this stuff in my books, and it surprised me a little to find myself getting miffed about such a petty thing.  I thought I had outgrown those feelings 14 years ago.  I guess my point is that we all face certain challenges from time to time, and we need to put our brightest face forward and meet those challenges with a good attitude, lest they get the best of us.

    The most important thing that helps keep me on track, for what it’s worth, is to remember that the gluten-free lifestyle is the key to our health and ultimate happiness.  We’re blessed to know that a simple change in lifestyle is all it takes to be perfectly healthy—and that’s worth a lotta mayo.

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    Guest Stephanie

    Posted

    I'm lucky to have a future mom-in-law who goes out of her way to make sure I have food, and even makes me my own dessert. My own family? "Guess there won't be any food for you at the Christmas party, huh?" and "I would hang myself if I had to eat your diet." That's their way of being sympathetic, I think. Just have to smile and accept that my family is clueless, not trying to be cruel. But man, they don't make it easy. I'll just keep baking yummy things and hope they see the light some day.

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    Guest Tammy

    Posted

    I wish I had understanding relatives. I have to call and ask what is being served and usually must bring my own meal anyway. If I offer to bring a dish to share, usually it is 'oh no, not necessary' (from one set of relatives). I have a sister-in-law who is very nice about it and even bought me gluten-free pasta when pasta was on the menu. The other sister-in-law, when asked if the meatballs were made with bread crumbs responds "oh, just a little". I have passed out a paper with easy to understand gluten article and a list of what I can and cannot eat, how gluten effects me, etc. I asked them to simply refer to this and let me know what I can and cannot eat so I can not get sick and can choose to bring my own food. Thank goodness my husband and son and daughter are so great about it!

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    Guest Michelle

    Posted

    I'm lucky to have a future mom-in-law who goes out of her way to make sure I have food, and even makes me my own dessert. My own family? "Guess there won't be any food for you at the Christmas party, huh?" and "I would hang myself if I had to eat your diet." That's their way of being sympathetic, I think. Just have to smile and accept that my family is clueless, not trying to be cruel. But man, they don't make it easy. I'll just keep baking yummy things and hope they see the light some day.

    Stephanie, it was the same with me and my family. They'll come around. It actually started with my brother's wife. It's funny, in-laws seem to be less clueless.

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    Guest Fern

    Posted

    I REALLY needed to hear this today, from your last paragraph:

     

    "The most important thing that helps keep me on track, for what it's worth, is to remember that the gluten-free lifestyle is the key to our health and ultimate happiness. We're blessed to know that a simple change in lifestyle is all it takes to be perfectly healthy—and that's worth a lotta mayo."

     

    Thank you!

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    Guest Irina

    Posted

    Hello everyone! I have just discovered this web site and I feel a huge psychological relief about it. Finally some people who understand me!

    I find it very very difficult to be understood by people, may they be friends, acquaintances or family members. They don't seem to understand the importance of it. I have the strong impression that since the symptoms of celiac disease are not immediately concretely observable (maybe if I were to start bloating like a balloon they would take it more seriously?), people tend to not take it seriously...some even gave me impression that I was just trying to make myself interesting, because by eating differently they kind of see it as me trying to be different to put myself at the center of attention. I admit that I am totally fed up with this as well as with the numerous questions to which I am subjected (now THAT is really a way to make me feel like I am at the center of attention) every single time that I say I'm a celiac. And there you go, questions, questions, questions...when all I want is to eat in peace so I can eventually socialize with tranquility. I therefore took the habit of eating most of time on my own, in order to avoid the "conference" before or during my meal. I can understand that they are curious about it, but hey, I am also saturated about it. Imagine that EVERY time you have to repeat and explain the same things over and over again...it's exhausting and sometimes I got to the point of saying "ok, can we just change subject now" or "ok well we are not gonna spend the whole evening or lunch talking about my food allergy are we?". I am tired of this kind of attention. I am dreaming of another kind of attention: simply respect my allergy, final dot. Once I have said I can't eat gluten, why can't people simply say "ok" and let me eat in peace? I guess they think that it is a sign of "interest" towards my person to question me about it...but for me it has become a pain in the neck.

    Concerning family, forget it! they will never understand! They keep on preparing food with gluten...finally it is only since 2 months that my mother has showed signs of REAL understanding, she even bought gluten-free products and she keeps them at home for when I go to visit her. This is a miracle! I nearly cried when she did this...I was so deeply touched by her gesture! I felt respected for the first time in years. And without respect as you all know, there can be no love, so...

    Now the next step is coming: explain that I have to be careful about the plates, forks, knives, spoons and gluten contamination which happens through them.....another step...I bet you they are going to think that I am exaggerating and making a fuss about it, whilst all I'm doing is respecting my body and health. In the end, all this topic, is about respecting the other one.

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    Guest Rebecca

    Posted

    Hello everyone! I have just discovered this web site and I feel a huge psychological relief about it. Finally some people who understand me!

    I find it very very difficult to be understood by people, may they be friends, acquaintances or family members. They don't seem to understand the importance of it. I have the strong impression that since the symptoms of celiac disease are not immediately concretely observable (maybe if I were to start bloating like a balloon they would take it more seriously?), people tend to not take it seriously...some even gave me impression that I was just trying to make myself interesting, because by eating differently they kind of see it as me trying to be different to put myself at the center of attention. I admit that I am totally fed up with this as well as with the numerous questions to which I am subjected (now THAT is really a way to make me feel like I am at the center of attention) every single time that I say I'm a celiac. And there you go, questions, questions, questions...when all I want is to eat in peace so I can eventually socialize with tranquility. I therefore took the habit of eating most of time on my own, in order to avoid the "conference" before or during my meal. I can understand that they are curious about it, but hey, I am also saturated about it. Imagine that EVERY time you have to repeat and explain the same things over and over again...it's exhausting and sometimes I got to the point of saying "ok, can we just change subject now" or "ok well we are not gonna spend the whole evening or lunch talking about my food allergy are we?". I am tired of this kind of attention. I am dreaming of another kind of attention: simply respect my allergy, final dot. Once I have said I can't eat gluten, why can't people simply say "ok" and let me eat in peace? I guess they think that it is a sign of "interest" towards my person to question me about it...but for me it has become a pain in the neck.

    Concerning family, forget it! they will never understand! They keep on preparing food with gluten...finally it is only since 2 months that my mother has showed signs of REAL understanding, she even bought gluten-free products and she keeps them at home for when I go to visit her. This is a miracle! I nearly cried when she did this...I was so deeply touched by her gesture! I felt respected for the first time in years. And without respect as you all know, there can be no love, so...

    Now the next step is coming: explain that I have to be careful about the plates, forks, knives, spoons and gluten contamination which happens through them.....another step...I bet you they are going to think that I am exaggerating and making a fuss about it, whilst all I'm doing is respecting my body and health. In the end, all this topic, is about respecting the other one.

    I'm sorry you've had such a rough time with it and the people around you!

    Although actually, it's not a food allergy... it's an autoimmune disease.

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    Guest Elena

    Posted

    Honestly I feel like the only people who truly understand are the people that are celiacs themselves, or the spouse/boyfriend/girlfriend of one. I agree that it's a hassle however making people more aware of what the disease entails but it is is an important thing. I really believe that one day we will be understood. Maybe not now, maybe not tomorrow, but in the years to come more people will be diagnosed and the reality of this increasingly common disease will be realized. *fingers crossed* For now all we can do is be patient, spread awareness, and thank heaven that our illness (however difficult to deal with) can be controlled completely by you and the steps that you take to better your health.

     

    P. S. Amazing article. It was great to see that I'm not the only celiac that goes through that period of resentment and reconciliation!

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    Guest Georgia Hartley

    Posted

    Big sigh. Yes, far too many people cannot comprehend how even just that little bit of gluten is misery for us. Too many times I've seen them go cross-eyed at my explanations. I even had one friend suggest that I should keep eating gluten to "numb" my system out so that I wouldn't react so strongly by the accidental exposures. : This person is even a health professional and understands the importance of digestive health but is unwilling to even address her own gluten issues. For most people that gluten addiction is so strong that it is a terrifying thing to even contemplate being gluten-free for them, add on top of that their fears of losing the convenience of eating anything and everything. Personally I am grateful I learned about gluten and Celiac. It's made my life and the life of my clients so much better.

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    Great article.. I wish my family understood what gluten is a little bit better. And my friends... It's hard being in high school (boarding school, at that) and having everyone legitimately think you have an eating disorder because you can never eat any of the school meals. And this is *after* you've gone to the dining staff numerous times and explained your problem to them, but they still don't take into consideration that everything they're serving has gluten in it. Once at a dinner I got annoyed because I ordered something that sounded gluten-free and it turned out to be breaded, and my friend next to me rolled her eyes and said "Come on, just eat it one time. It's not gonna kill you." I have one friend who took a huge interest in Celiac and asked for information on it, so I told her it's an autoimmune disorder and her response was "oh my gosh, your intestines have AIDS?!" Another friend positively flipped out at me, insisting that I'm starving myself and she's going to report me for anorexia if I don't start "eating" again (and I'll have you know, I probably have a healthier appetite than she does.)

     

    Fortunately my parents are very understanding of my condition, because they each have their own dietary restrictions and are avid label-readers to begin with. Extended family is a different story... none of them know what gluten is or what it's in. It's conversations with these people that often go like this...

     

    "so.. you have this celia thing? celic? what is it called?"

    "yes.. celiac."

    "Right, and you can't have gluten? you're allergic?"

    "it's not an allergy, so no, not exactly, but yeah I can't have gluten."

    "and... that's it?"

    "What do you mean?"

    "just gluten? well that's not so bad!"

    "..."

     

    This person then usually wants a rather specific explanation of what gluten is in, typically butting in with disbelief that I can't eat donuts or pizza or something, and not understanding, no matter how I explain it, how gluten would find its way into candy or soup. I'm also growing quite accustomed to the generic look of disbelief and annoyance when a family member hosting dinner discovers that they have to accommodate for dietary restrictions. After a half-hearted attempt, it almost always fails and I miss yet another meal (or at least most of one).

     

    My personal favourite, though, is when your well-meaning but carb-loving friends load up on bread, pizza, biscuits, you-name-it and eat it all right in front of you, moaning in ecstasy as they go on about how they "wish you could have some too! it's wonderful!"

     

    Perhaps a day will come when the world is educated properly about Celiac, and those of us who have it will finally be at peace. Until then, I'm glad I'm not the only one in a nightmare.

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    Guest Caryopteris

    Posted

    What? Don't any of you still have relatives who try to talk "sense" into you and not even believe you have food allergies?? (I can't stay off gluten long enough to test, and I can't afford the genetic test I just heard about). I'm trying to find discussions like the personality I'm dealing with, where one sister still thinks I'm just looking for attention. How absurd, I know. As if one would choose such an undignified and annoying health problem as food allergies/celiac disease to get attention, but that's how she acts. This despite her own daughter having life-threatening allergies. She believes hives and asthma, but not digestive problems and skin rashes. She was the first one to argue with me; as a child I announced that I shouldn't eat peanuts because they gave me headaches. She laughed at me. She's the same to this day. I could be mean to her about her overweight problem, but I keep my mouth shut. If only she could do the same.

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    Guest Becky

    Posted

    I have a wonderful mother-in-law too, Stephanie, who even though she is Italian and was brought up on bread, pasta and pizza really goes out of her way to make food for me which is totally gluten free. She searches for recipes, she researches celiac disease to see what I can and cannot have and I love her for it. It was quite funny when I shared dinner with my (future) father -in-law for the first time though and his son (my husband) was explaining that I could not eat pasta or bread of theirs. He looked at me incredulous and said.."no pasta or bread..but how do you live?"

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  • About Me

    Danna Korn is the author of “Living Gluten- Free for Dummies,” “Gluten-Free Cooking for Dummies,” “Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living,” and “Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy Gluten-Free Children.” She is respected as one of the leading authorities on the gluten-free diet and the medical conditions that benefit from it.

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    Danna Korn
    Our story began when our first child, a perfect baby boy, began to get sick. It started benignly enough, with more than just a touch of diarrhea, which the doctors attributed to the antibiotics he was taking for ear infections. When time was up on our allotted four-minute visit, we were told to keep an eye on it and call them if it didnt go away in a couple of weeks.
    What we were supposed to keep an eye on, Im not sure. The piles of diapers that we had to haul out every afternoon? The lovely rhinoceros-skin texture that my hands were assuming, thanks to the extra washings? Or maybe the water bill that had skyrocketed because of the additional laundry I was doing when the Pampers just couldnt accommodate the excess loads they were being asked to hold. In any case, they had told us to call if the diarrhea didnt go away in a couple of weeks, so we did.
    Apparently, what they meant to say was, well tell you to call if it doesnt go away just go get you out of our office feeling like we did something, but really wed rather you dont bother us because all were going to do is give you another obligatory four minutes listening to you whine and then tell you is that theres nothing wrong. Why cant people just say what they mean?
    Instead, I endured the heavy sighs of the receptionist who took it upon herself to play doctor and say, You mean youre bringing him in again just because of diarrhea? Well, yeah. Thats what I was told to do! Several heavy sighs and even an I-hate-neurotic-new-moms-snicker later, we had an appointment - for three weeks out.
    The second visit was, as I eluded to, an obligatory waste of time. After looking in Tyers ears, nose, and throat (did I lead you, Doctor, to believe that this problem was above his waist?!?), the doctor concluded that there was nothing to be concerned about. Oh, really? I guess its normal to be changing 22 diarrhea diapers a day? I dont think the doctor was amused when I offered to present him with a stool sample, since I was sure in the next ten minutes we would have one that we could examine together. No, I was sent away and told, once again, to call if the situation didnt improve in the next two weeks. Yeah, sure. Ill be sure to do that.
    It was with sadness and grief that I realized this pediatrician whom I had hand-selected after interviewing no less than 12 in the area, and who had offered a congratulatory hugs less than 12 minutes after Tyler was born, was not listening to me. It was time to find doctor-number-two.
    Sadly, our experience with doctor-number-two was a repeat of that with number-one. A quick looks in the ears, nose, and throat, followed by a declaration that we had a healthy baby boy sent my blood pressure skyrocketing. But what about the diarrhea I mentioned? I managed to ask with control worthy of the Nobel Peace Prize. Really, diarrhea is nothing to worry about unless the child is severely dehydrated and losing weight, I was told, as though I had the I.Q. of a water bottle. Well, Ive been force-feeding water to avoid dehydration, I explained, thinking that might make him realize that there was a reason Tyler wasnt shriveling up from thirst. Oh, good, he replied as he raced out the door to his next four-minute appointment. Keep it up and call me in two weeks if the situation hasnt improved. Ugh.
    After a few months, several hundred dollars worth of diapers, and cracked and bleeding hands, we switched to doctor-number-three. We chose a woman this time, figuring maybe some element of womans instinct or a maternal inkling would alert her to what we believed was a worsening condition. Well, hes in the 75th percentile for height and weight, she declared after looking in his ears, nose and throat. Certainly nothing to worry about with this bruiser, she gloated. Trying to be patient, hiding the clenched fists, and managing a smile that was as sincere as that of a politician running for office, I replied, But he used to be in the 98th percentile. Wouldnt that indicate weight loss, which could be a sign of something wrong? Oh, honey, dont be ridiculous! What do you want, a prize fighter? Hardy, har-har. I had a real Carol Burnett on my hands. Again, we were sent away and - you know the rest.
    And so it was. There was nothing wrong. Never mind that he had been loading up 22 diarrhea diapers a day for the last nine months - apparently he was just a poop machine. Never mind that his belly had grown distended to the point that he couldnt bend over and pick up his toys. Never mind that his arms and legs were skinny - hey, he was still in the 70th percentile for height and weight, and its not like I was trying to raise a prize fighter or anything.
    So it was without a care nor a complaint that I dragged my irritable, listless little Biafra baby into the office of doctor-number-four, a doctor to whom we were assigned when we changed insurance plans. After looking in Tylers ears, nose and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see if its ripe. My goodness, he said with that Im-alarmed-but-Im-a-doctor-and-dont-want-to-freak-you-out-so-Ill-smile-smugly-and-act-calm voice, Whats going on with his belly? I couldnt answer through the tears of relief.
    Relief turns to terror
    I never thought Id be so excited to be referred to Childrens Hospital. I called my husband with the good news. Sweetie, guess what?!? We have to go to the hospital! I announced as though we had just won the lottery. Never quite sure how to respond to my usually-overly-enthusiastic-and-not-always-sensical proclamations, he replied, as usual, with caution. Really? Is that a good thing? I guess in retrospect it wasnt a dumb question, but at the time it deserved, DUH! Were going to see the gastroenterologist!
    On the drive to the hospital, we sung the I love you song with such glee that it made Barney look like a candidate for Prozac. Were going to the hospital to see the nice doctor whos going to help us make you feel better, I sang to the tune of whatever I could come up with on short notice. Tyler, 18 months old then, sang too, and we practically danced into the doctors office for our first visit with the gastroenterologist.
    Somehow a three-hour wait in a doctors waiting room does a lot to dampen enthusiasm. Our gastroenterologist didnt even look in Tylers ears, nose or throat, a small favor for which I could have kissed him, even as tired and hungry as I was. He did do the honeydew thump on Tylers belly, and asked how long he had been experiencing diarrhea. Oh, about nine months now, I commented. Nine months? he asked. The large eyes and knitted eyebrows spoke for him, so he didnt have to finish his thought, which was obviously, Why did you wait so long, you oblivious, inexperienced nitwit?
    We were told that a variety of tests needed to be run. He tossed around names of these tests: upper G.I., lower G.I., ultrasound, serology, endoscopy, biopsy fecal fat, enzyme panel, WBC, and sweat test. Thinking maybe I had slept in those days during my Bio 101 classes in college and not wanting to admit it, I said, Oh, right. So that means youre testing for.... as though the condition was right on the tip of my tongue and I just couldnt recall it. He saved me the awkward silence that would have ensued and filled in the blanks. Were going to be looking at a number of possibilities: blood diseases, cancer, cystic fibrosis...that sort of thing. I thought I was going to faint.
    The bittersweet diagnosis
    After signing reams of release forms that we never read, and allowing doctors to poke, prod, anesthetize and scope our baby, we finally got a call from the doctors office asking us to come in for a consultation with the gastroenterologist. Well, cant you just tell me what it is on the phone? I asked. No, he wants you to come in, the receptionist told me. But is that a bad thing? Wouldnt he just call to tell me nothings wrong if my baby was okay? I began to panic.
    After a three-day wait in the waiting room (okay, it just seemed like three days because hours spent waiting in a 4 X 4 cubicle with an 18-month-old are automatically quadrupled in value), we finally saw the doctor and heard the words that would change our lives forever. Your son has celiac disease. Huh? Is that anything like a flu bug? Surely there was a pill we could give him that would make it all better. It simply requires a dietary change... Okay, so maybe we overdo the goldfish-shaped crackers a little - we can do without for a few weeks. ...he wont be able to eat gluten for the rest of his life.
    Back up the truck here, Mister. Rest of his life? Gluten? Is that anything like glucose? Because we can surely cut down on sugar....
    In a state of shock, we were directed down the hall to the hospital dietitian. Without looking up, she put her hand out, presumably wanting the chart that we had been instructed to give to her. Still in a daze, we handed her the chart. Several seconds of silence passed - had she fallen asleep? Was she writing her grocery list? Had she forgotten we were there? Finally, she said, So you need information on the gluten-free diet, huh? Dont get many of those. Really? I asked. How many have you had? None.
    She handed us a crumpled blue piece of paper that had writing on both sides. The first side, filled with size-two font, listed the foods and ingredients we were to avoid. The other side had size 48 font, presumably in an effort to make the page look full, and was titled, Acceptable foods on the gluten-free diet. There were six items on the list.
    Our first shopping trip
    Still resembling a zombie, I realized I had an 18-month-old child to consider, and he had been through as much as we had, so I asked what he wanted to do. Get a tweat! Cwackews! he replied (translated to treat and crackers for those of you whose kids are over 12). Not a bad thought. We had to learn how to shop sometime, so off we went on our first gluten-free shopping expedition.
    Armed with our crumpled blue sheet, we started in the cracker aisle. Carefully reading labels, I was amazed and delighted to find that not a single package had gluten in the ingredients list! How easy was this going to be! Lest you think that I do have the I.Q. of a water bottle, you have to remember that I was till in a state of shock, topped off with a touch of denial.
    I consulted my trusty blue sheet and realized that flour was, indeed, buried in the size-two-font list of forbidden ingredients, and put back all the crackers I had tossed into the cart. We went up another aisle. Pretzels...nope. Bread...not even close. But Mommy, I just want a tweat. Tylers patience was wearing thin. In desperation, I picked up a bag of Fritos. Could it be? Really? Surely I missed something. No, it was true. Not a single gluten molecule to be found! Hallelujah. I grabbed seven bags and headed for home.
    Ten years later...
    The beauty of living with the gluten-free diet is that you learn to love the gluten-free diet. Not only is it a medical necessity in our family, but it is a healthy way of life. Sometimes when I think, If only I could not have to worry about making tonights meal gluten-free, Id make..... WHAT? What WOULD I make? Would I make macaroni and cheese out of a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now theres a healthy meal. We put so much emphasis on making healthy meals that we wouldnt do those things anyway (well okay, every now and then maybe!).
    We are so fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available. Customer service reps actually know what were talking about when we ask if their products are gluten-free. Cookbooks and resource books abound, as do support groups and seminars.
    Most of all, those who are diagnosed are the lucky ones. No longer do they have to wonder why theyre fatigued, depressed or suffering gastrointestinal distress; they can rest assured knowing their gluten-free diet is preventing them from being more susceptible to conditions such as intestinal lymphoma, infertility, and osteoporosis.
    Yes, this diet can be a pain, but follow the mantra and you will be liberated. No longer will the diet control you, but you will control your diet. So....all together now ... Deal with it; dont dwell on it!

    Danna Korn
    If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two aspirin and Keep away from children.
    The transition from summer to back-to-school is paradoxical. On one hand, summer means sleeping in, adventuresome vacations, evenings free of homework and obligatory assignments, and a chance for parents to take pleasure in their kids carefree, relaxed summer schedule (or lack thereof). On the other hand, mantras like, Im bored, Are we there yet? Theres nothing to do here, and the non-stop sibling bickering that seems to escalate when one child dares to breathe the same air as another has some parents singing, Its the most wonderful time of the year a good four months before Christmas.

    But its not always the most wonderful time of the year. For parents whose children cant eat gluten, sending kids to school can create an entirely new dimension of anxiety that extend far beyond the typical back-to-school blues: What will he eat for lunch? What if there are birthday parties and my child cant participate? Will kids make fun of him? Will the teacher take time to understand his condition? What if he eats the Play Doh? How can I make this easier for him?
    This is harder on you than it is on your child
    If your child is newly diagnosed with celiac disease, or is new to the gluten-free diet, I know youre thinking, Oh, no its not! She just doesnt understand how hard this is. When I speak at conferences and tell parents this is harder on them than it is on their kids, I inevitably have one or two - always the parents of newly diagnosed celiac kids - who respectfully (and usually temperamentally) disagree. They tell me I dont understand.
    Believe me, I do understand. But also believe me that this is harder on you than it is your child. Its harder, because of the very nature of being a parent. We love our kids so intensely that every pain they experience hurts us ten times more. Nothing breaks our hearts more than to know that our children may experience heartache. But remember, one of our most important jobs as parents is to teach our children how to deal with unpleasant experiences and emotions. As Anne Bronte said, If you would have your son to walk honorably through the world, you must not attempt to clear the stones from his path, but teach him to walk firmly over them.

    Tips to make it easier
    Give your child control of his diet.
    Yep, even if hes just two years old. Anyone who has heard me speak or has read either of my books knows that Im an absolute nag about telling you to give your child control of his diet, because if he doesnt control his diet, his diet will control him. Educate your teachers and principal.
    Set a meeting with your childs teacher(s) and principal to explain your childs condition and diet. The best time to do this is a day or two before school starts for the year. The teachers are usually at school setting up their classrooms, but theyre not yet distracted with new students, parents, and classroom responsibilities. Provide the teachers, principal, and the school nurse, if you have one, with clear, concise written materials explaining celiac disease and your childs diet. Some people find it helpful to give the book Kids with Celiac Disease to the school, so that the nurse, teachers, and principal can more thoroughly understand the condition and diet. Make sure they understand the severity of accidental gluten ingestion. Remind them that they should contact you if there are any questions, rather than taking a chance. Lunches: use good judgment.
    Most of the time, the people in charge of preparing food for children in a preschool or school setting are already used to dealing with lactose intolerance, peanut allergies, and other dietary restrictions. Talk to the dietitian or person in charge of food preparation. Go over the menu plans, discuss the foods your child can and cant have, and talk about the importance of using clean utensils to avoid cross-contamination. If you feel comfortable with the persons understanding and acceptance of the diet, give them the opportunity to accommodate your childs special diet. You always have the option of sending in your own meals if you think its not working out. If you are interested in your childs legal rights to reduced-cost school lunches, see Kids with Celiac Disease under Section 504. Talk to the adult lunchtime supervisors.
    Kids will swap food. Its an age-old tradition, and its not likely to stop with your child. Aside from the likelihood of getting gluten, your child may end up hungry. Sometimes your childs goodies are better than the other childs, and it makes your child so proud that shell gladly give them all away, to be left with nothing. So the best you can do is explain to your child why she cant trade food with her buddies, and make sure the lunch area monitors are keeping an eye out for swappers. Out of snack and lunch ideas? See Kids with Celiac Disease.
    Its loaded with snack and menu ideas, many of which travel well in lunch boxes and bags. Give the teacher a stash of gluten-free treats.
    A large bag of Halloween-sized individually wrapped candies works well, and because theyre individually wrapped, the teacher can keep them in a cupboard without the threat of ant invasions. Let the teacher know that these treats are to be used any time there is a special event during which treats will be served. Make sure the treats are your childs favorite; you dont want him feeling like hes being short-changed. Get a schedule of classmates birthdays and scheduled holiday parties.
    Teachers are glad to provide you with a listing of everyones birthdays. This way you know in advance when there will be parties. You can coordinate with the other childs parent, or send your child in with her own cupcake or treat. If theres a surprise event, your child always has the stash of candy youve given the teacher. On your childs birthday, bring a popular gluten-free treat for the entire class.
    Its best not to risk celebrating your childs birthday with gluten-free cupcakes. Its possible that everyone in your childs class might like your homemade gluten-free cupcakes. On the other hand, there may be one kid who, for whatever reason, takes one bite and spits it across the classroom, declaring, What IS this stuff? You can bet your child wont forget that incident for a very long time. Its best not to risk it. Instead, bring in ice cream bars or ice cream sundaes. Or, if you cant do frozen foods, bring cutely decorated candy bars or goodie bags filled with candy (brands that everyone knows). It will bring your child immense pleasure to share treats with the class that she can eat too (and kids like that stuff better than cupcakes anyway!). Of course, you will want to be sensitive to any of your childs classmates who might have peanut or other allergies, and choose treats that everyone in the class can enjoy. Ask for liberal restroom privileges.
    Many teachers restrict the number of times children are allowed to go to the restroom, or they ask children to wait until a more appropriate, less disruptive time. Let the teacher know that your childs condition may require a hasty trip to the restroom, and that he should under no circumstances be restricted from going. You may even want to establish a little code between your child and her teacher, so that he can inconspicuously dismiss himself. Its a little less embarrassing than having to ask. Consider talking to the parents at the parents-only back-to-school night.
    Most schools have a back-to-school night for parents only. This is a great time to talk to the other parents about your childs condition and diet. Not only will you be helping them to understand and accommodate your childs diet, but you will be educating dozens more people about celiac disease - something we should all be doing on a regular basis. Dont be mad when people dont accommodate your childs diet.
    Its going to happen. Someone will have surprise treats for the class that your child cant eat, and the teachers secret stash will be empty. Or someone will decide its baking day, and your child will be the only one not sampling the goods. Dont be annoyed, offended, or angry. These people arent intentionally trying to leave your child out, nor are they being insensitive. They simply forget sometimes!
    Most importantly, remember that your child is learning from your reactions. He will be in situations like this for the rest of his life - teach him to be gracious, politely declining the treats offered to him, and to accept the fact that this is just one of those little stones in his path of life that hell need to learn to step over...with a smile and the knowledge that people generally mean well.
     

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


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    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
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    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
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    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
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    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
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    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
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    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    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.