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  • Nicole Vela
    Nicole Vela

    Tips for Raising a Gluten-Free Child

    Reviewed and edited by a celiac disease expert.

    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.

    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.



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    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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  • About Me

    Nicole Vela

    I am so thankful to be on this gluten free journey. I was sick for 12 years before going gluten free. I have always been a semi-homemade sort of cook . On my blog, Rolling Out Dough I am always challenging myself to come up with easy and affordable gluten free recipes. I also share money saving advice for healthy and gluten free foods. I enjoy helping others and encouraging people struggling with a gluten free diet. A lot of people struggle with cost of food, I also share gluten free and healthy coupons on my blog. I love to eat gluten free and I am a foodie at heart. www. rollingoutdough.com


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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.
    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:
    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
    Celiac.com 06/23/2016 - Digestive Disease Week 2016 took place in San Diego from May 21-24. Among the presentations given was one that stood out for its obvious health impacts. That presentation was given by Jonathan Cordova, DO, pediatric gastroenterologist at the University of Chicago Medical Center. His presentation tied celiac disease to major depressive disorder in adolescents, and stated that most adolescents with celiac disease have symptoms consistent with the disorder.
    Dr. Cordova said that "...interim analysis does suggest that a majority of adolescents living with celiac disease may have symptoms consistent with major depressive disorder," and that the depression has a negative impact on their quality of life, "but does not appear to be associated with their celiac disease state." That is, the depression does not seem to be impacted by how well their celiac disease is doing. Healthy gut and gluten-free diet, or unhealthy gut, with symptoms, it doesn't seem to matter. The depression levels seem about the same whatever the case.
    A number of recent studies indicate that depression and anxiety are the main reasons people with celiac disease report decreased quality of life, Dr. Cordova and his colleagues wrote. But, most of these studies were done on adults, almost none used adolescents, and adolescents may be more susceptible to depression.
    The research team was able to connect celiac disease with mental health disorders in adolescents by administering questionnaires to adolescents and their parents. Average age of adolescents was 14.6 years at the time of survey and 11.2 years at the time of diagnosis.
    The researchers found no correlation between celiac disease and depression, anxiety, ADHD, age at survey, quality of life, age at diagnosis or length of time on a gluten free diet. However, the majority of adolescents and parental reports screened positive for major depressive disorder.
    Interestingly, a parent's perception of the state of their child's celiac disease impacted their perception of depression in their child.
    Dr. Cordova says that "the data suggests that early screening for depression in any adolescent with celiac disease is crucial to help optimize behavioral health,"
    Dr. Cordova's team plans to follow these patients into young adulthood, and aims to re-screen them again in 5 years.
    Reference: 
    Cordova J, et al. Abstract #844. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego


    Jefferson Adams
    Celiac.com 05/30/2017 - Huff Post recently featured a good article on empowering kids with food allergies, including celiac disease.
    The article, by Miriam Pearl, suggests that parents seek to promote awareness and self-reliance in such children, rather than simply providing for them quietly and looking to protect them from allergens.
    The basic message is to help kids gain all the skills needed to manage their condition, rather than seeking to rescue them. Pearl writes that "The more practice [children] have managing themselves in the outside world the better they will get at it." She offers a number of useful tips to help parents along.
    First, she says, start early. It's never too early to let kids know what's going on, and what you're doing to help them maintain their health.
    Second, work to make the children aware of the things that impact their health. Show them what it's like to shop, cook, and advocate for themselves.
    Third, strive to show, teach and model everything they must know about safe foods and danger foods.
    Fourth, take them to the store with you and let them find gluten-free items. Among other benefits, this will help them learn to read labels.
    Fifth, enlist their help in packing their lunches.
    Sixth, ask them to listen to whenever and wherever you ask for food that is safe.
    Seventh, make sure they learn to carry their own snacks, just in case they can't control what food is around them.
    If they learn to do it early, they might avoid learning the hard way, which happens when you forget to provide snack for them, and they go hungry while everyone else eats.
    Lastly, when dining out, engage them in your effort to get answers from waiters every time you order food.
    Helping children to clearly see and understand the challenges of being gluten-free and having food allergies, and what it means to deal with those challenges on a daily level, help prepare them to make the right choices when confronted with unfamiliar or uncomfortable situations involving gluten-free food. This, in turn, helps them lead happier, healthier gluten-free lives.
    Source:
    HuffPost.com


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