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      Frequently Asked Questions About Celiac Disease   04/24/2018

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


    Danna Korn

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    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!


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    Guest Michelle L

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    Loved the humorous way the tale is told! It proves that with a sense of humor, you can survive anything, and even flourish! Way to go, Danna!

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    Think about living long time without the knowledge of what is making your life unbearable!

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    Guest Sara

    Posted

    My 4 year old was just diagnosed after health problems since birth. I laughed and cried at the article as it was so similar to our experience!

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    Guest Heather

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    It is great to read stories of others learning to cope with such a sudden, and very big change! My 2 young sons are at risk and I empathize with you. The desperation for your child's well being is a scary feeling, especially when the doctors think you are overreacting. After recently being diagnosed with celiac disease, I have struggled to find my way through the whole "shopping ordeal". It is starting to become less overwhelming, and now I am looking forward to the challenge. There are many things I will always miss, but the longer I continue the gluten free diet the better I feel. Now I am loving the diet, it probably has something to do with feeling alive for the first time in my life. I never knew I could feel so good, and so I think I can do without grandma's famous brownies. I was misdiagnosed or treated like a hypochondriac more times than I can count. Always another doctor with another prescription. After almost 25 years my husband was the one to figure it out. My heart goes out to the many people who suffer every day undiagnosed, or misdiagnosed. Thanks for sharing your story.

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    Danna Korn



    A must-read survival guide for parents, friends, teachers, and caretakers.
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    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.
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    Attitudes Are Contagious
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    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.
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    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).
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    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.”


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    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

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

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

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