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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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    CHILDREN AND GLUTEN FREEDOM


    Yvonne Vissing Ph.D.


    • Co-author: Christopher Moore-Vissing. Journal of Gluten Sensitivity Spring 2016 Issue - Originally published April 14, 2016


    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.


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    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.

    In our family, Chris never knew he was predisposed to celiac disease until he hit his twenties. Celiac is sneaky—while it can occur within people at any age, sometimes it doesn't show up until people get a bit older. As a child, he grew up on sandwiches, cookies, macaroni and cheese, and Grandma's home-made bread. When he had a tummy upset, as good mom I'd bring him chicken noodle soup and saltines. I never knew about celiac disease. My family came from a long line of gluten aficionados. As he hit adolescence and his teen years, signs of gluten intolerance emerged, only we didn't know that's what they were. Few parents link together migraines, skin problems with belly upsets and food "allergies." Chris's doctor dismissed his symptoms as independent, routine growing-up conditions without putting all the pieces of the puzzle together to realize that they were actually all a part of a larger celiac syndrome. It was only when he took a road trip and visited his father's sister and his cousins that he learned about the family's predisposition to celiac. His grandma always had stomach problems, I recall. She lived at a time and place where regular folks living in small towns were simply unaware of conditions such as celiac. As the old saw goes, you can't know what you don't know. In hindsight, she clearly had gluten issues. The gene seems to have been latent in her children, but passed on to take more active forms into the next generation of Chris and his cousin. It's confusing, because one child in the family can have a severe case of celiac while a full-blood sibling may have no sign of it at all! If he hadn't taken that road trip and stopped to visit his aunt, he may never have known that he had celiac. Upon that realization, suddenly everything made sense. All of his erratic symptoms were actually a picture-perfect portrayal of someone with celiac disease!

    We learned a bit about the disease, went to the store looking for gluten-free foods and quickly began modifying his diet. Since his MD couldn't figure out what was making him feel so bad, and if cutting out gluten could make him feel better, we decided that was a course worth pursuing. He felt better immediately. He has never been officially tested for celiac disease, although that would probably have been a better course of action. At that point in time, we simply didn't know about the testing options.

    Testing options have improved significantly over the last decade. The diagnosis of celiac disease can be done with a biopsy of the small intestine mucosa. Blood or serological tests are also helpful but less definitive. The University of Chicago Celiac Disease Center finds that the serum anti-tissue transglutaminase (tTG-IgA) is a widely used antibody blood test for screening for celiac disease, as is a total serum IgA test. The total serum test bolsters the reliability of the tTG test. A newer version of an old anti-gliadin antibody test has been developed called DPG or deamidated gliadin peptides test. Tissue transglutaminase (TTG) measures, endomysial antibody (IgA antibody to endomysium EMA) are recommended by many experts, while formerly used antigliadin antibody tests (AGA) are not as widely used.

    About 95% of people with celiac disease have the HLA-DQ2 gene and most of the remaining 5% have the HLA-DQ8 gene. Genetic testing can determine if someone has one or both of these genes. If someone has the gene it means they are at risk of developing celiac disease, but it does not mean that you necessarily have it. A positive genetic test should be followed up with a celiac blood panel to determine if someone has celiac disease. Celiac disease experts recommend family member testing as a proactive approach to diagnosis and then follow up with tests every 2-3 years or if potential symptoms start to emerge. They note that it is possible for someone to initially have a negative test result, but then test positive years later. This is worthwhile to know when trying to figure out if a child has celiac disease or not. It also means that re-testing may be a necessary process, since both the child's body and the disease propensity may change over time.

    What are warning signs that a child may have celiac disease? According to the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition and other celiac experts, there are both gastrointestinal and other symptoms to look for—symptoms that one may not logically associate with gluten. But remember that many of these symptoms may exist independently in children and have no relationship to having celiac disease at all! This is what makes trying to figure out whether or not a child has it extremely challenging.

    Once a determination is made that a child has celiac disease or is highly predisposed to be gluten intolerant or sensitive, changing the child's exposure to gluten in foods becomes of utmost importance. The problem is, most people aren't aware of gluten issues in general, and they particularly aren't thinking of it occurring in children. As Kay Chick (2014) describes in her article, there are many things that parents and teachers can do to proactively prevent problems in routine situations. She points out that many school cafeterias aren't equipped to safely serve children who have to go gluten-free. Most parents don't realize that making accommodations for children with celiac disease are assured under Section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act; seventy-four percent of parents who participated in her study reported their children did not have a 504 plan or written into an Individualized Education Program (IEP) to help everyone make accommodations for their celiac disease. Children with celiac may also be eligible for services under the Individuals Disabilities Education Act (IDEA) if it has an impact on their ability to learn.

    Social events like birthday parties, camps, and field trips may expose children to gluten in foods and provide no alternatives for those who can't eat them. Sharing food is a common childhood occurrence, but an experience that leaves celiac kids out unless they are sure the food is safe. Going to another child's house to play or for a sleep-over may be an extra-big deal for a celiac kid. When the team goes out for a pizza party or ice cream cones after a game, the child with celiac has to be extremely careful. It helps enormously when adults and people in supervisory roles understand that when children need to avoid gluten, it is not because it is a choice—it is a health necessity. While a public awareness campaign to help people understand that there are children (and adults) who have to avoid gluten is underway, there's still a long way to go. Children need to learn self-advocacy skills to keep themselves healthy. This is sometimes hard to do when interacting with parents, teachers, and other adults who think that they understand the complications associated with needing to be gluten-free—and they actually don't.

    Going gluten-free doesn't have to be hard, but when it comes to children and youth, often it is. From identifying that celiac disease could be a problem, to diagnosing it, to addressing it in one's daily lifestyle, children are a special interest population. In order to help celiac children to live long and healthy lives, it begins with educating adults, most of whom will never have to personally go gluten-free. Speaking out on behalf of a celiac kid is an important thing to do. Adults in all professions need to learn what celiac is and how to institute celiac-safe strategies into their organizations. Even if they aren't affected, adults need to realize how their decisions and behavior may adversely impact children.

    Our youngest citizens count on adults to always be looking out for their best interests. Speak with your local schools, recreation groups, and youth-oriented civic organizations to make sure the leaders understand that the chances are high that they are serving children with celiac disease. Help them to understand that they should learn more about what it is, that they should make sure eating arrangements always take into consideration children with special dietary needs, and have food alternatives readily available. Every parent would expect the same concern and attentive care if their child had celiac. And as a community, aren't all children "our" children?

    For more information, see our book, Going Gluten Free (Norlights Press 2015). Yvonne Vissing has been appointed by the United Nations to be a Policy Chair for Child Rights, under the UN Convention on the Rights of the Child.

    Resources:

    1. Chick, Kay. The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. 3/19/2014. Celiac.com
    2. Children's Digestive Health and Nutrition Foundation (CDHNF). www.cdhnf.org
    3. Diagnosis and Treatment of Celiac Disease in Children. Journal of Pediatric Gastroenterology and Nutrition. 2005; Volume 40, Number 1 (Jan): 1-19.
    4. National Foundation for Celiac Awareness. http://www.celiaccentral.org/
    5. North American Society of Pediatric Gastroenterology, Hepatology
    6. and Nutrition (NASPGHAN) http://www.naspghan.org//files/documents/pdfs/medical-resources/celiac/CeliacGuidelineSummary.pdf
    7. Raising Our Celiac Kids (ROCK). https://www.celiac.com/articles/563/1/ROCK-Raising-Our- celiac-Kids---National- celiac-Disease-Support-Group/Page1.html
    8. University of Maryland School of Medicine Center for Celiac Research
    9. http://glutendude.com/celiac/celiac-disease-symptoms/

    Image Caption: Photo: CC--jryde
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    So you believe that these rapidly growing numbers are directly related to earlier or better diagnosis, or the education of physicians today? I prefer to believe that it is the better education of the family physician with regard to the signs of celiac disease.
    To close I wanted to surprise you with some statistics with regards to the sales of gluten-free products, which in 2010 reached $2.6 billion, and were expected to exceed more than $5 billion in 2015. This year, with the increase in prepackaged gluten-free foods and the marketing restaurant guidelines one could estimate that it will be well over $15 billion. Celiac patients used to have to prepare everything from scratch, but we are quickly buying into the boxed fast-food "celiac generation".

    Yvonne (Vonnie) Mostat
    Celiac.com 10/25/2016 - The 504 Plan stems from Section 504 of the Rehabilitation Act of 1973. This section prevents discrimination against public school students in grades kindergarten through 12 because of disabilities. A 504 plan is meant to "remove barriers" to learning by providing a specific outline on how to make accommodations or modifications on a student-by-student basis.
    The Rehabilitation Act of 1973 applies to all institutions receiving federal financial assistance, such as public schools. Under this law, public schools must provide a free, appropriate public education and not discriminate against disabled students. This law acknowledges that the disability may not require special education services, but a plan is needed to ensure the student receives an appropriate education accommodating the disability within the classroom. This law must accommodate a special diet, including the gluten-free diet for children with celiac disease.
    The decision to enroll in the 504 plan is entirely up to you as a parent or guardian. Some parents find that informal discussions and accommodations have been sufficient for having the child's needs met at school. However, having a formal 504 plan in place is valuable, especially as teachers and staffing may change. The 504 plan guarantees by law that your child's needs are met throughout their school career and not just in certain classrooms. You can choose to utilize your 504 plan accommodations any time, and having them in place before you need them can save important time and resources. It can be helpful if your child develops symptoms from gluten exposure, or if you are having trouble with consistent accountability.
    How to Start Your 504 Plan
    First you need to contact your child's school. The 504 plan team should include: Primary classroom teacher School counselor or psychologist School nurse Director of food services 504 plan coordinator You will also need a doctor's note to show that your child has been formally diagnosed with celiac disease or non-celiac gluten sensitivity (gluten sensitivity). This note should outline the accommodations required to maintain your child's health, enabling him or her to have equal access to public education. Having a 504 plan in place will also make it much easier to apply for disability accommodation in college.
    What Information is Included in a 504 Plan?
    Generally you'll need to provide information about your child's diagnosis and needs including:
    Year of diagnosis Amount of time on a gluten-free diet Details on why a 504 plan is needed (including how a restricted diet affects a major life activity) Child's developmental level and needs (are they self-reliant in managing the diet? do they need strict supervision? Etc.) A 504 PLAN will specifically outline all of the details of how our child's celiac disease needs to be managed in the classroom. For example you and the 503 plan team can develop an action plan for:
    Navigating school lunches Snacks Birthday Parties Art Classes Field Trips Holiday Parties I wish that this 504 Plan was available when my son attended school! Do not forget to check your school's ruling on peanut butter. A lot of schools will not allow lunches to contain peanut butter because of severe peanut allergies, and we need to be respectful of other food allergies as we sort through the maze of gluten-free lunch packing.
    If you have a picky eater or a child who needs to gain weight after their diagnosis, nutritional shakes, power bars and calorie powders can pack a punch. Make sure they are labeled gluten-free. Consult with a registered dietitian to help with your child's meal plan. When you find a winning combo, send enough with your child to share. That will show your child's peers that gluten-free food is not "weird" and your child will have the opportunity to feel part of the group.
    Recently, the U.S. Department of Agriculture (USDA) mandated that food service workers who manage and handle meals would need to complete education and training requirements in order to maintain their positions. The requirement to maintain professional standards education, which is required by the Healthy, Hunger-Free Kids Act, went into effect on July 1, 2015. Completion of the GREAT Schools program helps school nutrition professionals meet this requirement. You can remind your child's school that completing the GREAT Schools training program does benefit both your child and the cafeteria staff in maintaining the necessary education to work in school food service
    Additional Resources:
    BeyondCeliac.org allergicliving.com Understood.org

  • Recent Articles

    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

    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.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    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.
    So, 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 and emotional support animals.
    Source:
    cnbc.com