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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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    TIPS FOR RAISING A GLUTEN-FREE CHILD


    Nicole Vela


    • Journal of Gluten Sensitivity Autumn 2014 Issue


    Celiac.com 08/02/2016 - One thing I have noticed since becoming a parent is how every place we go there are treats and candy. Even cashiers hand out candy at the checkout. Food is everywhere. Our kids are constantly being bombarded with sugary baked goods and salty snacks.


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    Wow, how times have changed! When I was a kid, and yes, my saying that makes me sound ancient, but it was only the 80's...back then we were sent outside in the morning and all of the neighborhood kids convened in someone's backyard. We went home for lunch and moms certainly did not hand out treats, especially not butterfly shaped waffles or any of the other Pinterest-inspired foods out there. We considered ourselves pretty lucky if someone had Freeze Pops in their house. If you are raising a child gluten-free, you know how much of a challenge it is that everything revolves around food.

    The diagnosis of celiac disease or non-celiac gluten sensitivity is a huge eye opener for many. I think one of the hardest things for a family starting a gluten-free diet is how different our diet is from the way most people cook and eat. Since the 1950's we have morphed from TV dinners to buying entire meals from the grocery store deli, and our breads, cakes, and rolls from the bakery. And we've moved from a dinner out being a rare treat to the drive-thru being the norm for many families. Some parents never learned how to cook themselves, so it can be quite a shock to go from a world of just picking up dinner at the drive-thru or the deli, to a world of cooking from scratch at home. I know. I was a processed foods kid, and now I am definitely a "semi-homemade" cook.

    Going gluten-free can be overwhelming at first. It will get easier. Here are a few tips and resources for raising a gluten-free child.

    Take advantage of the internet and your smart phone. I love subscribing to digital gluten-free magazines, finding new recipes and reading books from my Kindle App. Make grocery shopping easy by using The Gluten-Free Grocery Guide by Triumph Dining (1). They have produced an app that tells you which foods are gluten-free at the grocery store. The app features popular brands and even includes store brands. They have done the research for you by calling brands and manufacturers to create this resource. I know how hard it is getting through the grocery store with kids in tow. It needs to be as easy as possible!

    Know that you are not alone. There are many other parents facing the same obstacles as you. Surround yourself with support. R.O.C.K, Raising Our Celiac Kids (2) is a support group that can help you with the challenges ahead. Two other support groups you may look into are The Gluten Intolerance Group (3) and Celiac Sprue Association (4), while these are not groups for kids, they still provide valuable help and information.

    Talk to family and friends about the seriousness of your child's needs. A lot of people don't understand how celiac disease or gluten sensitivity effects someone. Educate them. Make it clear that foods can't just be given to your kid, even a food that one may think of as gluten-free. Tell them about hidden sources of gluten. Let them know why a gluten-free menu at a restaurant may not actually be gluten-free. If your child spends a lot of time with a relative go over items in their home, like their toaster, that may be sources of cross contamination.

    Teach your child the effects of cheating on their diet can do. Short term and long term. There are going to be many times of temptation. They are eventually going to be teenagers and have their own transportation and money. They need to be able to make smart choices as young adults.

    Be prepared for class parties and classmates' birthdays. I suggest making it easier for yourself by giving a good supply of treats to your kid's teacher and having a good store of treats at home. Some yummy pre-packaged treats are Jelly Belly Snack Packs, Enjoy Life Cookies, and Lucy's Cookies. These are great choices for multiple food sensitivities. I also recommend packing snacks for around town, play dates, and after school activities. Having healthy gluten-free snacks on hand is important for when there may not be any allergy-friendly snacks available.

    I try to stick to as many natural foods as possible, but occasionally, I like a treat or an easy meal. Thanks to the huge growth in gluten-free consumers there are a ton of food choices available. Gluten-free pizza, mac 'n' cheese, chicken tenders, cookies, pasta, even gluten-free toaster pastries. If you live in a rural area, with stores that don't carry a lot of gluten-free items, take advantage of online shopping. I like the ease of shopping from Amazon, Vitacost and The Gluten-Free Mall. As a busy mom I love that I can get items delivered to my door.

    Get your kids in the kitchen. Teaching your kids to cook is an invaluable resource that will serve them life-long. Learning how to make a meal from whole natural foods can be fun and it teaches them how to eat a healthy diet. You can do this yourself or there are a lot of kids' cooking programs at local culinary centers, grocery stores, and community centers.

    Kids will adapt and adjust. If they are older and have been eating gluten-containing foods their whole lives, it will be more difficult because their palates have been formed. Try to ease the transition by having them go grocery shopping with you so they can learn what is still available to them, and then do something fun like chocolate gluten-free waffles. Or pick up some gluten-free ice cream cones and ice cream. Let them know they don't have to give up everything. Having a positive attitude is essential. Children will model what you show them.

    References:

    1. http://www.triumphdining.com/glutenfree/apps.php
    2. https://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html
    3. https://www.gluten.net/gluten-intolerance-group-branch-offices/
    4. 4.http://www.csaceliacs.info/find.jsp

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    The snacks you gave though gluten free are high in sugars. Sugars are just as bad for our kids as gluten.

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    The snacks you gave though gluten free are high in sugars. Sugars are just as bad for our kids as gluten.

    This site is not a site dedicated to sugar-free living.

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    Most sugar is gluten-free and celiacs can eat any that are gluten-free. I am not sure why you want to push this agenda here.

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    Yvonne Vissing Ph.D.
    Celiac.com 05/03/2016 - How do you know when your child has gluten sensitivity, gluten intolerance, or celiac disease? If gluten issues run in your family and you know there is a predisposition to having problems with gluten in foods, then you may be alert to signs that it has been passed on to your child. But if you and your biological family members never had problems with it, then you're not expecting gluten to be an issue. Children arrive with a complicated genetic past that we may not always have the details about. We may not know the health history of the families of our child's other parent, or even sometimes our own. We may not know if anyone had reactions to gluten. Because celiac and gluten sensitivities can appear as chameleons, genes for it may be masked as other health issues. Parents may be a carrier and have no identifiable symptoms at all. People may have celiac disease without ever knowing it.
    It's complicated to raise a child. When they don't feel well, it's hard to figure out when their health problems are physical, emotional, social, or psychosomatic. When it comes to kids, having a belly ache is a common occurrence. So are a variety of symptoms that are linked to celiac disease or gluten intolerance or sensitivity, like headaches, fatigue, skin issues, depression, or GI track problems. When are signs pointing at the normal wear-and-tear of growing up—and when they are related to a syndrome like celiac disease? It takes a significant period of observation to figure this out.
    Celiac disease is regarded to be an immune-mediated enteropathy caused by a permanent sensitivity to gluten in genetically susceptible individuals. The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) found that the prevalence of celiac disease in children between age two-and-a-half and age fifteen ranges from 1 in 80 to 1 in 300 children. This means that in a pediatric practice of 1,500 children there are probably between 5 and 20 children with diagnosed or undiagnosed celiac disease—and potentially a lot more if one adds in gluten intolerance or sensitivities. According to the National Foundation for Celiac Awareness, celiac disease is genetically based, so reactions to gluten are more commonly found in those who have a family history of this autoimmune condition. They collaborated on a multi-phase research project with people diagnosed with celiac disease and at-risk family members who remained untested. Celiac disease was found in 5 to 10 percent of the family members of persons who had been diagnosed with celiac disease. But people may have reactions to gluten yet not have celiac disease. Some may have gluten intolerance or be sensitive to it without being diagnosed with celiac disease, so the actual relationship of health problems potentially associated with gluten may be considerably higher. First and second-degree relatives have more of a risk of developing celiac disease than are more distant relatives. For instance, their research found that celiac disease can occur in about 1 in 22 among children and their parents or siblings. But in analyzing the child's relationship to aunts, uncles, nephews, nieces, cousins, grandparents, half-siblings who may have celiac, the number decreases to 1 in 39. Detailed results of their research can be found from the NFCA's Seriously, Celiac Disease campaign.
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    Resources:
    Chick, Kay. The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. 3/19/2014. Celiac.com Children's Digestive Health and Nutrition Foundation (CDHNF). www.cdhnf.org Diagnosis and Treatment of Celiac Disease in Children. Journal of Pediatric Gastroenterology and Nutrition. 2005; Volume 40, Number 1 (Jan): 1-19. National Foundation for Celiac Awareness. http://www.celiaccentral.org/ North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) http://www.naspghan.org//files/documents/pdfs/medical-resources/celiac/CeliacGuidelineSummary.pdf Raising Our Celiac Kids (ROCK). https://www.celiac.com/articles/563/1/ROCK-Raising-Our- celiac-Kids---National- celiac-Disease-Support-Group/Page1.html University of Maryland School of Medicine Center for Celiac Research http://glutendude.com/celiac/celiac-disease-symptoms/

    Jefferson Adams
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    Reference: 
    Cordova J, et al. Abstract #844. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego

    Jefferson Adams
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    Source:
    HuffPost.com

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    Jefferson Adams
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    Jefferson Adams
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    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
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    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
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    Source:
    cnbc.com

    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
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    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    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