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      Frequently Asked Questions About Celiac Disease   04/07/2018

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


    Jefferson Adams


    • Did Colonial Williamsburg wrongly boot an 11-year-old gluten-senstive boy from one of its restaurants?


    Celiac.com 08/16/2017 - Colonial Williamsburg prides itself on educating both children and adults in the rich history of life in colonial America. That's why claims that Colonial Williamsburg kicked an 11-year-old boy on a school field trip out of one of its restaurants earlier this year are drawing attention and sharp comment.


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    The incident happened May 11, during a field trip for about 30 students and 30 adults. The trip, which included a meal at Shields Tavern, was the culmination of a yearlong research project.

    The boy, identified in court documents only as "J.D.," suffers from a medical condition that prevents him from eating the same food as his classmates, and the restaurant's policy specifically forbids outside food. The lawsuit claims that, even after a teacher tried to persuade the manager to let him stay, the manager forced J.D. out of the restaurant, where he ate his lunch in the rain.

    "J.D. was crying openly as he was removed from Shields Tavern in front of his peers," the lawsuit said. In speaking with management, the teacher learned that the restaurant "permits toddlers to eat outside food, including goldfish and Lunchables inside the restaurant."

    When J.D. eats gluten, he experiences "precipitous drops in blood pressure that result in him losing consciousness," the lawsuit said. "Doctors haven't determined whether it is celiac disease or a "Non-Celiac Gluten Sensitivity," but multiple specialists at Johns Hopkins have concluded that it is critical J.D. not ingest gluten, even in trace amounts," the suit said.

    "Before his exclusion, J.D. was able to participate fully with his peers with confidence," the suit said. "After his exclusion and because of Defendant's callous and discriminatory conduct, J.D. felt less worthy than other children and embarrassed by his disability."

    The family's attorney, Mary Vargas, said in a statement that "Children with disabilities that require strict adherence to special diets often find themselves on the outside of school parties and social events, but here this child was quite literally removed to the outside in a way that left him feeling humiliated and unworthy."

    She goes on to call the actions by Williamsburg's management "…despicable behavior by any adult but especially by an organization that professes to offer educational programming for children."

    The lawsuit seeks unspecified damages and attorney fees, as well as changes to how Colonial Williamsburg handles people with disabilities.

    The Colonial Williamsburg foundation has declined to comment on the suit.

    Source:


    Image Caption: Colonial Williamsburg. Photo: Joe Ross
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    That's not for us to determine or judge, but you're questioning it as if its fraudulent. We were not there, and we don't have all the facts, but yet it appears by the title of this article you have your doubts. We have a court system well equipped to handle such cases, I say let the system let us know what actually happened and then we can form an opinion. Sometimes I really do question what side you're actually on at times.

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    I don't want to believe that people are this crazy. But this is a terrible thing to do to a child. I have had celiac for about 14 years now and it is not fun at all. It is very hard to eat any where besides home and I bring my lunch every day to work, not because I want to but I have to. I always take something to eat where ever I go and have never had a problem with it. People really need to be educated on how bad this stuff effects people. And it is different for everyone. Me I am in the bed for 2 days and can't do anything but run to the bathroom.

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    I was at a ST Louis Bread Company (Panera- as its known in St Louis) three years ago, happily visiting a bunch of family. I asked if they had anything gluten-free, as I had been able to find some things at other Paneras in the past. When the guy found a had celiac disease, he asked me to leave. The manager then came to me and said 'you are not safe in here - please leave. And you should leave now. We make bread here. 'They didn't even want me in the restaurant while my family (not realizing what had happened) started placing their orders. The looks on their faces made me feel like I was a contagious leper. No friendliness whatsoever. I looked at their website before posting this - and I understand their stance the celiacs shouldn't eat their food. But a little compassion or at least kindness would have been appreciated. So unprofessional.

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    Guest Gloria Picucci

    Posted

    Something like this happened to me on July 15 in London, at Covent Garden. I asked a restaurant to sit down and have only a cup of coffee but a nice guy came closer and said that I had to take something to eat. I was very angry but didn't say anything, except that I asked "Have you anything gluten free?". He answered a quinoa salad (that I don´t particularly like) so I went away, very frustrated and upset. I am a celiac, 63 years old from Italy.

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    Guest Joanna Jarrell

    Posted

    I am shocked and saddened by the actions of this restaurant in Colonial Williamsburg! As a person with Celiac Disease, it is difficult living with this disease as an adult. It must be twice as difficult for a child. The behavior of the management at Shield´s Tavern is shameful, and I hope they are sued for every penny they have earned.

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    Guest Grandma

    Posted

    I have a 7 year old granddaughter with celiac and yes, it is very difficult, but doable. You have to plan ahead and always have food with you as you just can´t randomly stop just anywhere. I understand there are places that will tell you it isn't safe for you to be there, like a bakery, with flour particles in the air. (like a peanut allergy at Texas Road House) Places are so afraid of being sued. Just need a lot of education. Williamsburg situation just seems like an uneducated person who poorly handled a situation.

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    I was at a ST Louis Bread Company (Panera- as its known in St Louis) three years ago, happily visiting a bunch of family. I asked if they had anything gluten-free, as I had been able to find some things at other Paneras in the past. When the guy found a had celiac disease, he asked me to leave. The manager then came to me and said 'you are not safe in here - please leave. And you should leave now. We make bread here. 'They didn't even want me in the restaurant while my family (not realizing what had happened) started placing their orders. The looks on their faces made me feel like I was a contagious leper. No friendliness whatsoever. I looked at their website before posting this - and I understand their stance the celiacs shouldn't eat their food. But a little compassion or at least kindness would have been appreciated. So unprofessional.

    I suspect what they saw when they looked at you was a potential lawsuit over gluten exposure. Kind of paranoid if so, but maybe they've been sued before over something else and are kind of "gunshy". Still, a bit of consideration and respect would have been nice.

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    Guest Dominique

    Posted

    Wow, have we gotten to the point of judgement without facts? Sue them for every penny they have? Yes, this seems like a very unfortunate situation, and most likely I would have been angry for the supposed behavior of the tavern management, but to sue them for every penny they have. Liberal rhetoric! I, too, am tired of not being able to eat what I want where I want, and I've been to restaurants where there was nothing I could eat, so I left. Granted this child did not have a choice, and putting him out in the rain, assuming the story is accurate, was uncalled for. But it's high time we teach our children that others do not define them, that the actions of others is not what determines their worthiness. Furthermore, to sue them for untold damages, that's the pity of this story. What is this child being taught? If someone does something that "offends" me, then sue them for all they have? At what point do we learn to pull ourselves up by the bootstraps and stop always insisting on our way? This could have been a lesson for this child in what compassion looks like and doesn't look like; what it means to believe in yourself in spite of others; to learn forgiveness. But it's the adults! The adults who are teaching revenge and that worthiness is a byproduct of what others do and say. The next generation will prove to be insufferable with this kind of "education".

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    Guest Doris Orvis

    Posted

    Having spent much time in Colonial Williamsburg, and working right next to it, I cannot imagine anything like that happening there. However, I haven't been there in years. Having celiac myself, I know the pain in the neck I experience when going to a restaurant and asking for a gluten free menu and there isn't one. When there is one, it gives the whole menu and tells what's in each meal, pain to read for sure. but there are so many who choose to go gluten free for some reason or another, so I can see it makes it difficult for restaurant owners to put out a menu. The problem is so many people are sue happy and restaurants want to protect themselves from such lawsuits if for some reason or another a celiac person accidentally eats gluten food. If people bring in their own it also could cause a lawsuit for the restaurant, so it could be that the restaurant asked the boy to eat outside of the restaurant. However, since it was a school outing, the teacher was not allowed to leave the boy outside by himself, especially not in the rain, so therefore I have a little doubt about this story being true as said. The restaurants in Colonial Williamsburg are very expensive, so what school takes the children to such a restaurant? You have to think about the whole scenario. There is a field where they usually go to eat their own food they bring, if it rained they would have stayed on the bus. Best not make judgements about the restaurant owner before knowing all the facts.

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    Guest AWOL cast iron stomach

    Posted

    Regardless of two sides to every story there is a young man who had a very difficult experience. Possibly humiliating , isolating, and embarrassing. The educator was unsuccessfully at being an advocate in this situation and the child (please remember this is a child- someone´s beloved baby no matter what age) he likely experienced very uncomfortable feelings. Young man if you are out there and read this I am sorry for your experience, I send a virtual hug, that can be a challenging experience for anyone. If I could have been there to pick you up on behalf of your parents to alleviate the burden this situation caused you I would have. The middle years and high school are challenging enough while handling celiac or ncgs too. Celiac ncgs is a challenge and I hope some of you recall or can empathize the middle and teen years can be hard. (former educator here at one stage in life) Did the parents overreact as some of you convey? This maybe the last straw and the young man has had other negative experiences etc. The parents were not there and were powerless to intercede at the moment. The parents are sending a message even if it goes no where. Maybe two wrongs don´t make a right but a lot of disconnects occurred on both ends to come to this. Often times people react in fear and lack the ability to think of their actions on others. We lose our humanity. I as an adult was eating my gluten-free food with my son in a parking lot of a baseball game and an employee told me it was illegal to eat on the grounds. I explained our illness and she instructed me to pack it up or she would call the cops. Thankfully we were almost done eating. It is tough enough to eat in a parking lot and make the best of it, but to be treated less than kind just adds that cherry on top. Part of me wonders what if I let the cop come how would he /she handle it, then I thought this is stupid, walk away and send your 3 emails to teach empathy and perspective the cop has more important things to do. My emails to the affiliated agencies were dismissive and pointed the fingers at each other and one never bothered to respond. So young man despite the adults around you remember you were not at fault and any person with sense can see that . Don't let this experience leave a mark on your precious life. Best Wishes.

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    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

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

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

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

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

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

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

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

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

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

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

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com