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Celiac.com 11/18/2023 - Celiac disease is a complex autoimmune condition triggered by the consumption of gluten, a protein found in wheat, barley, and rye. As awareness of this condition grows, so does the need for accurate information. In a recent poll on Celiac.com, participants were asked various questions about celiac disease. This article aims to dissect and discuss the results of this poll, shedding light on the correct answers, common misconceptions, and the importance of accurate information. Worldwide Prevalence of Celiac Disease Poll Question: Worldwide, how many people have celiac disease? Around 0.01% - 0% Around 0.1% - 4% Around 1% - 28% Around 5% - 17% Around 10% - 51% Correct Answer: Around 1% Discussion: The correct answer is approximately 1% of the global population. Celiac disease is more common than many people realize, affecting about 1 in 100 individuals worldwide. Surprisingly, 51% of poll participants believed the prevalence to be around 10%, indicating a significant overestimation. This misconception highlights the importance of spreading accurate information to create a more informed and supportive environment for those with celiac disease. Diagnosis of Celiac Disease Poll Question: How is celiac disease typically diagnosed? Tarot cards - 0% Just by feeling better not eating gluten - 1% Blood antibody tests - 9% Endoscopy where biopsies are taken - 4% Blood antibody tests followed by an endoscopy where biopsies are taken - 86% Correct Answer: Blood antibody tests followed by an endoscopy where biopsies are taken. Discussion: Diagnosing celiac disease involves a combination of blood tests and an endoscopy with biopsies to confirm the presence of villous atrophy. Despite this clear diagnostic process, 86% of participants correctly identified the need for both blood tests and biopsies. In certain cases where tTg-IgA levels are 10x normal it may be possible to make such a diagnosis, possibly leading to 9% who believed that blood tests alone were sufficient, in general a more comprehensive diagnostic approach is typically necessary for an accurate diagnosis. Safety of Eating at Gluten-Free Restaurants Poll Question: Eating in a restaurant that has a gluten-free menu is always safe for someone with celiac disease. TRUE - 4% FALSE - 96% Correct Answer: FALSE Discussion: The vast majority of participants, 96%, correctly identified that eating in a restaurant with a gluten-free menu is not always safe for individuals with celiac disease. Cross-contamination is a significant concern, even in establishments offering gluten-free options. The 4% who chose "TRUE" may underestimate the strict measures needed to prevent cross-contact, emphasizing the need for continuous education on the challenges faced by those with celiac disease. Conclusion This poll provides valuable insights into the prevailing perceptions and misconceptions surrounding celiac disease. As awareness grows, it is crucial to ensure that information is accurate and accessible. Dispelling myths and providing correct information empowers individuals with celiac disease and fosters a more supportive and understanding community. Education is the key to creating a world where those with celiac disease can navigate their dietary needs with confidence and security.
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Twelve Common Questions About Celiac Disease
Jefferson Adams posted an article in Celiac Disease Basics
Celiac.com 09/18/2019 - At Celiac.com, we get all kinds of questions about celiac disease. Here are some of the most common questions we see. Is celiac disease a food allergy to wheat, rye or barley? While it's true that people with celiac disease must avoid wheat rye or barley, celiac disease is not a food allergy, it is an auto-immune disease. Find out more about the differences between food allergies and food intolerance. What foods are gluten-free? You can find Celiac.com's extensive list of safe gluten-free foods and ingredients here. What foods contain gluten? You can find Celiac.com's extensive list of unsafe gluten-free foods and ingredients here. What are the main symptoms of celiac disease? Classic symptoms of celiac disease include gastrointestinal symptoms, like upset stomach, abdominal pain, gas, bloating, indigestion, and diarrhea. Many celiacs suffer from many these and other symptoms on a regular basis. However, many others show few or no symptoms. No single set of signs or symptoms is typical for everyone with celiac disease. Signs and symptoms almost always vary from person to person. How common is celiac disease? Celiac disease is one of the most common chronic health disorders in western countries. It is also one of the most under-diagnosed. Recent studies and advances in diagnosis show that at least 3 million Americans, or around 1% of people have it, but less than 1 in 5,000 cases is ever diagnosed. Here are some celiac numbers compared to other diseases. Can people with celiac disease drink alcohol? People with celiac disease can drink alcohol. They still need to avoid consuming wheat, rye and barley directly. Even though the scientific consensus is that distilled beverages contain no gluten, many celiacs choose to consume only alcohol which is labeled 'gluten-free.' Others freely consume alcohol distilled from cereal grains, including whiskey and gin, with no noticeable problems. To find out more, check out our list of gluten-free alcoholic beverages. Do people with celiac disease have a higher risk of other diseases? People with celiac disease do have a higher risk of certain associated diseases, including Addison's disease, peripheral neuropathy, Crohn's Disease, congenital heart disease, epilepsy, and many more. Is celiac disease genetic or hereditary? Celiac disease is heavily influenced by genetics. Having certain genes can increase a person's risk of developing celiac disease. Also, people with first-degree relatives who have celiac disease face a significantly higher risk for developing celiac disease. Can genetic testing help to spot celiac disease? Genetic tests for celiac disease and gluten sensitivity are readily available. Testing can be performed on either blood and mouth swab samples. Tests can be done at home and mailed to the lab for analysis. Does eating gluten in childhood influence celiac disease risk? Researchers have been busily hunting for celiac risk factors in children. A recent study showed that every daily gram increase in gluten intake in 1-year olds increases the risk of developing celiac disease autoimmunity by 5%. Can celiac disease cause mental problems? There is no evidence that celiac disease causes mental problems directly. However, celiac disease is associated with several mental conditions, including schizophrenia. Also, at least one recent study shows evidence of a link between gluten sensitivity and acute mania. Can celiac disease cause skin problems? Celiac disease is associated with at least seven skin conditions.- 2 comments
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Hi guys! I just joined the group. As you can tell from the title, I haven't been diagnosed yet, but I have been experiencing symptoms for over a year now. Now, after lots of research and a recent increase in symptoms I am thinking that I might have a gluten intolerance or Celiac. Last year, I gained 20 pounds in about two months. This was very surprising to me, as I exercise about 6 days a week, and I hadn't changed my diet. I wear a Garmin, so I track my calories in/out, and I generally (when dieting, as I was because I wanted to lose the 20 pounds I gained) ate around 1300-1800 calories a day while consistently burning about 2200 calories (I am aware 1300 calories is low, but I'm recovering from an eating disorder that was triggered by the weight gain, so I'm working on it.) Despite all this, the weight just wouldn't come off. In November of last year, I fractured the femoral neck from running, a thing my doctor said is very unusual for a person my age (at the time I was 22), I have also seemed to have been plagued by breaking limbs every few years since my childhood. I also began to experience what I now think is bloating. I have also ever since I was a baby had severe constipation. Recently, I have had more mucus in my stool then I have ever seen before. On top of that, I have always have had a very hard tome falling and staying asleep. As I was researching Celiac, I realized that many of my symptoms matched with the intolerance. I am scheduled for an appointment with a gastroenterologist next week, but I am hoping to get some ideas for questions I should be asking, tests I should ask about getting, really anything you wish you had asked when first getting diagnosed. I also wanted to hear about your pre-diagnosis stories, especially concerning weight gain pre diagnosis, and if it came off once you started cutting out gluten. Thanks so so so much for taking the time to read my story! --A newbie to the Celiac community
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Hello! I have my first post-diagnosis GI appointment on Friday. I was diagnosed with celiac disease via blood test, and DH. What tests do I request? What do I ask? I don't know enough to know what to ask. Thank you!
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My name is Melissa Mandrick I have celiac disease and I was impatient and they Contaminated my food I got celiac reoccurrence and right after I found out I got gallstones. My gallbladder was removed. Before it progressed to the point I was peeing blood. Doctor thinks I have a hernia from surgery. I get gastrol spams every week to the point I pass out. Med change. Later same place Contaminated again . My local hospital didn't believe my source of stomach spams instead check my vagina it was fine and was hurt not there but my stomach.no food for my to eat. What do I do about further hospitalazions.
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Celiac.com 02/15/2010 - Just five simple questions can help you determine if your child needs a gluten-free diet, according to the a recent Danish study that aims to improve celiac disease diagnosis in children. Celiac disease is a disorder in which people suffer intestinal damage when they eat foods made with wheat, rye, or barley. Over the last five or six decades, rates of celiac disease have increased 400%. Worse still, at least half of kids with celiac disease never get diagnosed. That means they will continue to eat foods made with wheat, rye, or barley; and that they will suffer persistent symptoms such as diarrhea, abdominal pain, and behavior problems, along with intestinal damage, that are perfectly avoidable with a gluten-free diet. A simple blood test can tell doctors which kids most likely have celiac disease. But doing a blood test on every child is simply not practical. Would it be better to test just the kids who show one or more symptoms common to celiac disease? To answer that question, doctor Peter Toftedal, MD, of Denmark's Odense University Hospital, created a simple, five item questionnaire to help parents provide information on recurrent abdominal pain, chronic diarrhea, constipation, and lack of height and weight gain: Has your child ever suffered from abdominal pain more than twice during the last three months? Has your child ever had diarrhea lasting more than two weeks? Does your child have a tendency to firm and hard stools? Does your child gain enough weight? Does your child gain enough height? Toftedal's study team conducted a trial of the questionnaire in Denmark's County of Funen. They mailed it to the parents of 9,880 8- and 9-year-olds. Prior to mailing the questionnaire, just 13 children in Funen were known to have celiac disease. A total of 7,029 parents returned the completed questionnaire, with 2,835 reporting at least one symptom. The research team invited these children for a celiac blood screen. A total of 1,720 children submitted to screening, with 24 showing positive antibodies common with celiac disease. Additional testing confirmed 14 case of celiac disease among the children of Funen, meaning that only half of the kids with celiac disease had been diagnosed. When you factor in the additional 1,115 parents who did not report for screening, the result might be slightly higher. Toftedal and colleagues conclude that a number of "preclinical and low-grade symptomatic patients with celiac disease may be identified by their responses to a mailed questionnaire." Pediatrics, March 2010
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Can I be cross contaminationed by purchasing resale items that have come in contact with gluten? Can I properly sanitize a bedding set without destroying the color/fabric? If so, how? I purchased a bedding set through a virtual yard sale, and my husband brought this question up. I've never thought of it in my 6 years as a diagnosed celiac. I couldn't find information about cleansing cloth (fully) from gluten, and I'd like to feel safe before picking the set up. Any info or direction would be greatly appreciated.
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Is it possible for a Celiac to eat gluten with no symptoms?
Carolyn.D posted a topic in Meet Up Room
My daughter was diagnosed with Celiac via endoscopy/biopsy and had other indicators such as blood counts and vitamin/mineral deficiencies. At first, it seemed that she was incredibly sensitive to any cross contamination. Now, several years later and well into recovery, she has gotten accidentally glutened several times with seemingly no adverse effects. Is that even possible? Could the initial diagnosis have been incorrect? Or once the gut has healed, can a Celiac sometimes tolerate occasional exposures better? Thank you for your insights.- 3 replies
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My daughter has her yearly GI specialist appointment in a couple weeks. She was diagnosed almost 3 years ago. She’s very strict with her eating but has still been having a lot of gut issues for at least the last 6 months. She spends a lot of time in the bathroom - usually diarrhea but occasionally constipation. She’s also very dizzy whenever she stands up or exercises. I was going to ask about testing for iron and other vitamin deficiencies but I wasn’t sure what other tests I should request. She did have Non-Hodgkin lymphoma a couple years before the celiac diagnosis and as a result had a bowel resection - so I may ask for an u/s just to recheck her bowels. Any other suggestions?
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Celiac.com 12/05/2016 - Symptomatic suspected gluten exposure is common among patients with celiac disease on a gluten-free diet. A gluten-free diet is the only recommended treatment for celiac disease. Although anecdotal evidence suggests that suspected gluten exposure is common among celiac patients following a gluten-free diet, there is not a great deal of hard data to support that view. A team of researchers recently set out to assess the prevalence and characteristics of gluten reactions in people with celiac disease on a gluten-free diet. The research team included JA Silvester, LA Graff, L Rigaux, JR Walker, and DR Duerksen. They are variously affiliated with the St Boniface Hospital in Winnipeg, Canada, the College of Medicine at the University of Manitoba in Winnipeg, Canada, and with the Celiac Research Program at Harvard Medical School in Boston, MA, USA. Their team prospectively enrolled adults with biopsy proven, newly diagnosed celiac disease. They then conducted a survey related to diet adherence and reactions to gluten, both at study entry and at 6 months. To measure celiac disease symptoms and gluten-free diet adherence, they used T Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT). Of the 105 patients enrolled, 91% reported gluten exposure less than once per month, while the average CDAT score was 9 (IQR 8-11), which suggests good dietary adherence. Two out of three patients reported suspected symptomatic reaction to gluten. Most, 63 percent, did not suspect gluten consumption until a reaction occurred. Meanwhile, just under one-third (29 percent) reported that problems happened when ordering in a restaurant. Thirty percent of patients say that gluten was consumed from incidental contact, while 10 percent said it was due to eating a major gluten ingredient. Average time to symptom onset was 1 hour, though onset ranged from 10 minutes to 2 days. Symptoms lasted about 24 hours on average, and ranged from 1 hour to 8 days. Symptoms typically included abdominal pain (80%), diarrhea (52%), fatigue (33%), headache (30%) and irritability (29%). Even with good dietary compliance, most celiac patients following a gluten-free diet suffer from regular adverse reactions to gluten. Eating away from home continues to pose the major risks for accidental gluten exposure. The team recommends that physicians treating celiac disease patients should include regular questions regarding gluten reactions as part of their assessment of gluten-free diet adherence. Source: Aliment Pharmacol Ther. 2016 Sep;44(6):612-9. doi: 10.1111/apt.13725. Epub 2016 Jul 22.
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I get hundreds of e-mails each month from parents of kids newly diagnosed with celiac disease or beginning the gluten-free/casein-free dietary intervention program for autism or ADHD. I thought it would be helpful to share some of these e-mails with you... Dear Danna: My four-year-old son is autistic, and were trying the gluten-free/casein-free dietary intervention program. There are no health food stores near me, so I have to drive an hour to get all of his food. Also, its very expensive. I dont know if we can afford this diet. Do you have any suggestions? Lisa L. Dear Lisa: Dont feel locked into shopping at health food stores. With the exception of baked goods and mixes (bread, cakes, cookies, etc.), you can do most, if not all, of your shopping at a regular grocery store. You can even buy generics! The first thing you need to do is become familiar with the safe and forbidden ingredients. To learn whats allowed and whats forbidden on the gluten-free diet, there is an excellent list on www.celiac.com -- you may want to print it out and take it to the store with you. Then learn to read labels carefully. If the ingredients appear to be okay, call the manufacturer (theres usually a toll-free number on the package - I bring my cell phone into the store with me so I can call before I buy) to confirm that the product is, in fact, gluten-free/casein-free. Youll find that the list of things he can eat is a lot longer than the list of things he cant! Happy shopping.... Dear Danna: My daughter is six and has always had terrible diarrhea. My brother and I both have celiac disease, so I figured she does, too. I dont want her to have to go through all the testing, so Im going to put her on a gluten-free diet and see how she responds. How soon should we expect to see improvement? Pam F. Dear Pam: I know its tough to handle the thought of putting our kids through testing, but proper testing is essential. Your daughter must be on a gluten-containing diet in order for testing to be accurate, so I would urge you to get her tested quickly, before putting her on a gluten-free diet. Id recommend doing the antibody screen (a blood test) first; if its positive, Id encourage you to have an intestinal biopsy done on her. Believe me, I know its hard to put our children through these tests, but its important that you know for sure, and proper testing is crucial. Dear Danna: I suspect my nine-year-old nephew has celiac disease, but the doctors wont test him because hes in the 70th percentile for height and weight. He has gas and bloating, and occasional bouts of diarrhea. My brother (his dad) had celiac sprue as a child, but doctors told him he outgrew it. Drew S. Dear Drew: First, people dont outgrow celiac disease (celiac sprue). Decades ago it was thought that they did - but now we know that celiac disease is a lifelong condition (sometimes symptoms may appear to fade away, but damage is still being done to the small intestine). Your brother should be properly tested (testing is much better now than it was when he was a child). If he does have celiac disease, your nephew is at greater risk for having it, too, since celiac disease is a genetic (inherited) condition, and youre right to suspect it. Sometimes doctors are reluctant to test for celiac disease - its extremely important to demand testing - if the doctor wont test, find one who will. (By the way, my son was in the 75th percentile for height and weight when he was diagnosed - some adult celiacs are actually overweight.)
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Celiac.com 02/25/2011 - In many parts of the world, recommendations by World Health Organization (WHO) regarding child nutrition are regarded as the scientific standard. So, any time a major health organization comes out with recommendations that differ from those made by WHO, there is always much discussion about the science behind both sets of recommendations, and, occasionally, some intellectual and scientific jousting from both sides. That was the case recently, when a magazine called BMJ (formerly the British Medical Journal) published new and controversial recommendations regarding breastfeeding. According to an article by Susan Perry on MinnPost.com, those recommendations, the resulting criticism from WHO, and BMJ reviewers' response make some excellent points about issues of conflict of interest in research. The recommendations by BMJ suggest that breast milk should be supplemented with solid foods starting around the age of four months, two months earlier than currently recommended by the World Health Organization (WHO). According to the reviewers, waiting to introduce solid foods increases a baby’s risk of developing anemia, food allergies and celiac disease. Those recommendations brought a strong response from WHO, which noted that its own decade-long no-solid-foods-until-six-months recommendation is “based on evidence that the early introduction of solid food to babies increases the risk of infection and disease.” The response from WHO then proceeds to refute each argument made by the BMJ reviewers. A response by Susan Perry to the spat appears on MinnPost.com, and makes some excellent points about issues of conflict of interest in research. Now, this debate between WHO and BMJ is a bigger deal in certain places than in others. The United States never officially adopted the WHO recommendation, as did the U.K. in 2003. Ironically, it seems that more American than British moms are following WHO standards. BMJ reviewers say that less than 1 percent of British mothers exclusively breastfeed their babies for six months. In the United States, that figure is 13 percent, as reported by the Centers for Disease Control and Prevention. However, that's a story for another day. But, a strong rebuttal from WHO is not the only problem facing the authors of the new BMJ review. A more pressing problem for BMJ study is that three of the four authors admit that they took funding within the past three years from companies that manufacture infant formula and baby food. Now, these researchers claim that their findings and recommendations are in no way influenced by their financial relationships with these companies: "My colleagues and I are independent pediatricians and scientists, funded by universities or hospitals, and we received no funding for doing this review other than our normal salaries,” review author, Mary Fewtrell, a child nutritionist at University College London told NatureNews reporter Natasha Gilbert. She adds that “all of us have had links with industry at some point. We are making no comment in our paper about what type of solid foods should be introduced — this could be home-prepared or commercial depending on the mum's choice — the main issue is that the food should be nutritionally adequate and safe." But financial connection between study authors and industry cannot fail to raise legitimate questions about the independence of study findings. Moreover, such a relationship creates a cloud of potential doubt over the nature of the findings. Indeed, the review itself indicates a strong desire within the baby food industry to get British health officials to change their current advice to mothers to breastfeed exclusively until six months if possible. Survey data shows that British mothers are slowly pushing back the age at which they introduce solid foods to their babies. Successive surveys since the 1970s show that nearly all UK infants receive solids by four months. The number in the 2000 survey, for example, was 85%. However, the 2005 figure drops to 51%, with mean age of introduction of solids at 19 weeks, a rise from 15 weeks in 2000. In view of the higher reported rates of exclusive breast feeding to six months elsewhere in the West (more than 30% in Hungary and Portugal, for example), it seems likely that the impact of the UK recommendation will be greater in 2010 than in 2005. It is timely to consider whether such trends could influence health outcomes. Susan Perry notes in her response that the study seems "extremely timely, therefore, for baby food companies to consider whether such trends are going to damage their bottom line — and to financially support, even if not always directly, the research efforts of "friendly" academics." That’s one example of why researchers who accept money from industry should be prepared to have their studies, methodologies, data and recommendations questioned — along with their motives. Source: MinnPost.com
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