Posts tagged ‘kids’
National School Lunch Week: School Nutrition Consultant Talks Gluten-Free
Last August, the National Foundation for Celiac Awareness (NFCA) hosted a back-to-school webinar with Gabriela Pacheco, RD, LD, SNS, a school nutrition consultant with expertise in specialty diet accommodations. In honor of National School Lunch Week, we decided to circle back with Gabriela and get some more tips on how parents and schools can work together to provide gluten-free school lunches to celiac and gluten sensitive students.
NFCA: What is the biggest challenge schools face in offering gluten-free options? Is it the cost? Not enough demand? Staff training?
Gabriela Pacheco (GP): All of those challenges happen and are different in every district.
Staff training is certainly the biggest challenge. With or without a diet prescription, the foodservice staff must understand proper label reading and handling of all foods. This is especially challenging when a reaction to cross-contamination can have serious effects on the student.
Cost can be a challenge in some districts because the school cannot pass on the extra expense to the student. In other words, if a student gets free, reduced, or pays full price for school meals, the school cannot charge them for the extra expense to make the special meal.
The demand “should” not be an issue. One child or 100 students should be treated the same. However, some districts may push back if there is only one student or a few students needing the special meal. The U.S. Department of Agriculture (USDA) states that if a student has a food intolerance or allergy, the school can – but does not have to – modify meals, unless it is a life-threatening reaction such as anaphylaxis. It all lies on the diet prescription from a certified medical authority; if the diet prescription states that meals must be modified, then the district has no choice.
With or without a diet prescription, if the school nutrition staff works with parents of students with celiac disease or non-celiac gluten sensitivity, they demonstrate support of a segment of the community by helping them improve their quality of life and concentrate on school – not stress about food.
NFCA: What are some schools meals that meet the new USDA nutrition guidelines and are gluten-free?
GP: USDA – The National School Breakfast and Lunch Program ensures that your child eats a healthy meal, including meals for children with special dietary needs. Although a gluten-free diet limits some food options, schools can put together kid-friendly school meals. Having a diet different from that of his/her friends may cause your child to feel singled out. Get him/her and yourself involved with cafeteria staff to go over food preferences to make him/her feel more comfortable about school meals.
School meals must meet new meal pattern requirements, which include fruits and vegetables at every meal, as well as a meat/meat alternate (protein source), legumes, fluid milk and whole grains. Gluten-free foods include fruits, vegetables, poultry, fish, beef, nuts, eggs and more. Schools already have these onsite; however, preparation is the key. Purchasing gluten-free bread, for example, can be the only substitution the student requires to have a lunch which looks the same as his friends. Along with a side salad, a fruit and milk, the meal is complete!
Most schools now have salad bars that contain a wide variety of items such as kidney beans, fresh fruits and vegetables, cottage cheese, and some even have the protein available there to make a complete meal. Add milk and again, a complete meal. The student just has to make sure to watch the salad dressings or anything else which may have been cross-contaminated. If the student is old enough, they learn what to choose. If still young, a teacher or cafeteria staff can help with the salad selection.
There are several manufacturers who make gluten-free items specifically for schools. One good resource is Rich Products. They make pizza dough and other items that will fit into the school meals and meet guidelines.
NFCA: How can schools be more welcoming to special dietary needs? Should they post the information on their website? Ask the foodservice director to speak at parents’ night?
GP: Both of those options are a great start. The first step is to consider the needs of the student. Second, it really takes a lot of teamwork. The school nutrition department, the parents and the student should all be involved. Forming partnerships is key. Many districts already post carbohydrate counts/exchanges, PKU diets, etc. – why not add gluten-free options?
Keep in mind that they are not required to post gluten-free options, which is why communication is important. Asking for the menus so parents can go over it with their child and circle meals they like also helps. The cafeteria staff can then work with the student on proper gluten-free exchanges. This way, the meal is not so “special” and different from other students.
NFCA: What advice do you have for parents who are reluctant to contact the school about their child’s gluten-free needs? How can they approach the conversation with confidence?
GP: The first place to go is the foodservice/nutrition director. The cafeteria staff can refer you to him/her. Parents can discuss options with the director.
If the student has a diet prescription from a medical authority, then it is especially important that the director ensures the cafeteria staff, your child’s first line of defense, is trained and understands gluten-free diet and modifications. Even without a written medical statement, the school may provide the child with special meals, but is not required to.
Form a partnership with the cafeteria staff and offer to help choose your child’s meals. Remember that they have to order foods from approved manufacturers, so it may be that they have to order from outside vendors to provide gluten-free options. They cannot charge the student more for that meal, so they do have to consider the increased cost. A parent should never hesitate approaching the nutrition department about their child’s needs, but keep in mind that there are regulations.
NFCA: What’s one thing parents can do during National School Lunch Week to advocate for gluten-free needs in the lunchroom?
GP: Parents can form a partnership with the food and nutrition department to send out a newsletter or a side note on the month’s menu regarding children with celiac disease and non-celiac gluten sensitivity, and how the department can help with modifications. School administrators can also benefit from this, as they don’t always understand regulations.
For more articles on this topic, visit NFCA’s Gluten-Free Resources for National School Lunch Week 2012
A GREAT Coincidence
Last February, I received a random phone call on my NFCA line. It was a mother, Jenny Tierney, who seemed pretty devastated. Her teenage twin daughters had just been diagnosed with celiac disease. (All of the staff at NFCA answer all kinds of calls from newly diagnosed patients and others in the food industry or healthcare field. It’s a great opportunity to walk them through the resources available at CeliacCentral.org.)
After a review of NFCA’s resources, Jenny felt a bit better and she agreed that she could handle adapting to the gluten-free diet at home and working with the school, but her biggest fear was sending the girls off to camp. The girls had gone every year since they were very young to this amazing camp for most of the summer. The solution was easy. I shared information about GREAT Schools, Colleges, and Camps and suggested she have the camp contact me.
A month later, I received an email from a college girlfriend Sara, who lives near Kansas City. Sara told me about her neighbor, Kathy Dix. Kathy and Sara had been chatting, and the topic of gluten-free foods came up. Sara is always telling people about her gluten-free college pal and my job with NFCA. She thinks it’s amazing how 20 years ago when I was diagnosed with celiac disease, it was considered a rare disease and food availability was scarce. Over the years, Sara has referred me to anyone interested in anything about gluten-free. She also cuts out articles related to celiac disease and gluten-free from newspapers and magazines and sends them with a note saying, “Reminded me of you,” or “Hey isn’t this cool?” or “Wow, this gluten-free stuff is everywhere.” Gotta love her for it.
The camp sure looks like fun!
Photo credit: Camp Ogichi Daa Kwe Facebook page
Well, it just so happens that Kathy needed gluten-free training for her camp. She’s the director of a girl’s camp in upper Minnesota called Camp Ogichi Daa Kwe. A conference call was set up to talk to the staff to understand their needs and how NFCA’s GREAT Camps program could help. On the call, I perceived the compassion and love the staff seemed to have for their mission at the camp, and how vested they were in giving all their campers a complete experience. They were ready to sign up and complete the course.
Toward the end of the conversation, they revealed that their interest in learning about gluten-free protocol for the camp staff had to do with twins that returned every year. These twins had been diagnosed with celiac disease recently, and Camp Ogichi Daa Kwe wanted to live up to its “Strong Spirited” name and ease the girls’ mother’s concerns about sending them to camp while they were still learning the gluten-free diet. Kathy’s goal was to ensure that these young women would continue their “growth in self esteem, deep seeded friendships, and memories to last a lifetime,” and the first step in achieving this goal was becoming GREAT trained, allowing the girls to continue their summer tradition of attending Camp Ogichi Daa Kwe.
Small world, isn’t it?
– Beckee
5 Tips to Empower Gluten-Free Kids
[Your kids have learned the basics of gluten-free, so what’s next? Katie Chalmers, author of Mommy, What is Celiac Disease? and founder of G-Free Kid, has ideas for helping your little ones become proud and confident gluten-free champions.]
As parents, the best thing we can equip our gluten-free kids with is a positive attitude when it comes to being gluten-free — right from the start. As soon as that optimistic attitude is in place, the next thing to help them cultivate is a budding sense of independence. As our children grow, we can help empower them to start taking the lead. Here are 5 tips that have helped my twin daughters (one with celiac and one with non-celiac gluten sensitivity) start to be ‘g-free’ advocates:
1. Help them champion their own cause.
Show them some ways in which they can help spread the word and raise money for celiac disease awareness. Help them start a team for an upcoming celiac walk and let them help keep track of donations flowing in and asking friends and family to physically be there to walk together as a team. We have been doing two Celiac walks (“Making Tracks for Celiacs”) a year for the past 4 years — one with friends and extended family, and another one further away from home by ourselves. We take group photos, wear team tags and hang out before and after the walk. We usually win a gift basket for the amount of money we raised, and the girls help pick it out. Going home feeling supported by loved ones, with a prize and tons of free gluten-free samples in tow — plus a sense of pride in knowing we helped raise money for a good cause — is always a great boost for self-esteem.
If you don’t have one of these annual walks in your area, learn how you can raise money through Team Gluten Free or NFCA instead.
2. Nurture their creativity.
Make your gluten-free kid feel like a champ by helping them design a “Super Celiac” or “Gluten-Free Girl” costume. If your child is still young enough to enjoy dressing up and playing pretend, letting him or her play make-believe Superheroes with a cape and power bracelets is a fun way to “zap gluten” or whatever they want to play.
If your child is old enough, let them have their own cooking show. Have them don an apron and chef’s hat and talk through a cooking demonstration while you videotape them. This will be good public speaking practice, and it will help them organize their thoughts, follow recipes, read aloud and use good eye contact. Have them practice what they plan to say and do on the video until they are comfortable enough for you to start taping. Post it on YouTube to get them excited that they made a “real” video, which the whole world can watch and learn from.
Do your kids enjoy music more than cooking? Together, come up with some new lyrics to go with a familiar tune — all about being gluten-free. Put it to music, videotape it and send it to friends and family.
Or let them start a pretend bakery where everything is gluten-free. Help them set up a place to play with pretend food, aprons, toy cash register, fake money, paper plates, etc. Let them make their own signs, menu and decorations. Be their best customer and encourage the rest of the family to stop by with a smile and place an order.
Being gluten-free becomes natural and fun when you bring all of these types of creative play into your kids’ lives.
3. Teach them to read labels.
For very young kids who don’t know how to read, send along a list of offending ingredients for caregivers, along with a list of naturally gluten-free items, such as fruit and raisins. Help little ones learn how to spot the words “gluten-free,” the certified gluten-free logo or other prominent labels. When looking at packages, the terms “multigrain” and “whole grains” can often be confusing for little kids (and even for adults!), so be sure to explain to them that just reading those words on a package doesn’t mean it is automatically ruled out. Corn and rice can still be considered multigrain or whole grain, too. Teach them that oats need to be certified gluten-free to be considered safe, and other similar tips.
Start label-reading lessons small, by going to Grandma’s house and showing them offending ingredients on labels. Then go home and have them read labels on their gluten-free products so they can see what is okay. If your child is old enough and has a long attention span, spend some time together in a grocery store (at a slow time of the week) and go through it aisle by aisle, explaining which kinds of food are gluten-free or not. Show them how many yogurts and ice creams are gluten-free, except those with cookies, brownies, sugar cone pieces, etc. Show them all the naturally gluten-free foods and the special area where the gluten-free products are. I do this with my daughters every now and then to test them on what they know, and they, in turn, always love to demonstrate their growing knowledge. If this sounds too overwhelming for a younger child, then just do it in small doses on a regular basis as you do your weekly shopping together.
4. Let them speak up for themselves.
Kids of all ages can learn to speak up for themselves to varying degrees. Young kids can learn how to ask, “Is this gluten-free?” or “Is this safe for me to eat?” Let your child order for themselves in a restaurant and have them inform the wait staff that their food needs to be gluten-free. Even if you plan on discussing details with the waitress, manager or chef yourself (which I would advise in order to avoid cross-contamination), it is important for your child to get in the habit of always making sure people know that he or she needs to eat gluten-free.
If your child is old enough, test them to see if they can correctly name the gluten-free options on menus at restaurants by themselves. Teach them why they can’t eat certain things like french fries, which are deep fried in shared fryers with gluten-containing foods like breaded chicken fingers. Let them ask if there is a dedicated fryer or not. The older a child gets, the more they need to have these habits set in place. The more they practice, the more comfortable they will get with the necessary dialogue. Your child will be filled with pride as he learns these lifelong social lessons.
5. Let it become their “normal.”
Find other gluten-free families that live near you. Get together. Let the kids get to know each other and play together on a regular basis, which might also mean snacking together — gluten-free. Get involved in a kids’ support group and the activities that go along with it. If you can’t find one, be your kid’s hero by starting one and making it happen.
If your child is old enough, let him attend a gluten-free summer camp. There are nearly 20 options in the U.S. alone! How cool would it be for a gluten-free kid to be able to do all the regular camp activities with other children on the same diet, without anyone needing to ask if the food is safe or not?
Lastly, fill his or her bookcase with children’s books about being gluten-free. If your child loves dinosaurs or princesses, count how many books he or she has about them. On the other hand, how many books does your child have about being gluten-free — something your child is going to be for life? There are a bunch of great books out there now about celiac disease and being gluten-free. You can never have too many! As they read the books, they will take pride in knowing that they are “just like” the main characters, which will help them feel understood and cherished. And consider all the people your child can share their books with — teachers, classmates, friends, relatives, etc. What better way to help spread awareness than lending books? For kids, it doesn’t get any easier…
These empowering tips will take our children far by teaching them knowledge and positive social skills that will benefit them for a lifetime. The wonderful thing is that awareness of celiac disease and non-celiac gluten sensitivity is growing rapidly, which in itself is pretty empowering for all of us!
– Katie Chalmers
5 Tips for the Gluten-Free School Years
[Kids spend hours a day at school – including meal times. College students live and eat on campus. How do you ensure their dietary needs are met? Wendy Gregory Kaho of Celiacs in the House shared her tips for navigating the school years with your gluten-free child.]
Whether it is preschool or college, planning ahead is the key to gluten-free school success. Here are my best tips for making you child safe and understood at school. Including your child at every step along the way will build confidence and teach important life skills.
1. Know your rights and advocate for your child.
Find a support group with experienced parents who can offer their insight and advice, and use online resources to educate yourself about your rights. Armed with the facts and good support it will be easier to take a calm, yet firm approach with school staff.
A 504 Plan Guide is on the Resources/Printable Guides page at the NFCA site.
2. Educate the staff.
This includes the school nurse, teacher, cafeteria staff, counselor, and principal. Explain what to expect from your child and how to best meet the child’s needs while sharing the facts about celiac disease and its only treatment, which is a gluten-free diet. Inform the staff of possible reactions to gluten that your child might experience and how they can help your child after accidental gluten exposure.
Look at the sample Teacher Letter on the NFCA site.
3. Plan and prepare for parties, field trips and events that involve food.
Whether you keep a supply of gluten-free treats for your child at school in a freezer or special drawer or plan on events as they occur, staying informed and prepared will help your child feel included. Make the process fun and an opportunity to teach nutrition and the cooking skills that will serve your child for a lifetime.
Take a look at the fun gluten-free kid food ideas on Pinterest.
4. Empower your child.
Include them in the process of choosing foods and planning and packing lunches. Role-play and practice how to explain their dietary needs.
Gluten-free school lunch ideas from Heidi at Adventures of a Gluten-Free Mom will get you started.
5. Stay positive.
Help your child see the opportunities to advocate for themselves and others with special diets or other needs.
Find more resources at NFCA’s website, including resources for all school levels and webinars in the archives with more school tips.
– Wendy Gregory Kaho
5 NFCA Webinars to Watch Right Now (Plus 1 on the Way)
You’ve learned the basics of gluten-free, and now you’re ready to learn more information. Well, you can read until you’re blue in the face, but there’s another, more engaging way to get those facts and tidbits you’re looking for: Webinars.
In case you didn’t know, NFCA hosts a monthly webinar series, with topics ranging from everyday food choices to gluten-free holiday prep. The webinars are free, and we always post the recording and slides in our archive, so you can go back and listen again and again. Here are 5 webinars you can find in our archive right now.
1. Food as Medicine for Celiac Disease: Nutrition Beyond the Gluten-Free Diet
In this webinar, NFCA Scientific/Medical Advisory Board Member Rachel Begun, MS, RD, offers practical advice on how to incorporate foods into our diet that heal the body and can even prevent disease. Pay close attention to her tips on combining different foods, like leafy greens and citrus, to improve absorption of nutrients.
2. Maintaining a Healthy Weight While Eating Gluten-Free: The Importance of Mindful Eating and Physical Activity
How often do you eat because you’re stressed? Or tired? Or bored? Dietitian and local celiac support group founder Amy Jones, MS, RD, LD, reveals some of the habits that contribute to weight gain, especially when following a gluten-free lifestyle. (Did you really eat that many cookies before you went gluten-free?) We bet you’ll have an “A-ha!” moment listening to this.
3. Top 10 Ways to Get Gluten-Free Kids to Eat Healthy
This webinar is designed for dietitians who counsel families affected by gluten-related disorders, but there are plenty of tips anyone can use. EA Stewart, BS, MBA, RD, walks you through the best ways to set up a gluten-free kitchen, plan meals with your kids and foster good eating habits by putting healthy options within reach.
4. Nutrition and Training for the Gluten-Free Athlete
NFCA Athlete for Awareness Peter Bronski leads this webinar about the best ways to fuel your body with a well-balanced gluten-free diet. Pete explains what to eat before, during and after an athletic activity, then answers actual training questions from the audience.
5. The Importance of School Nurse Education and How-To Strategies for Parents of Gluten-Free Kids
Summer vacation is just starting, but now is a great time to brush up on what you’ll need to review with school nurses, administrators and teachers in the fall. Nina Spitzer, President of CDF’s Greater Phoenix Chapter, outlines the 504 plan and who you’ll need on your child’s School Team. Bonus! Get a list of recipes for yummy gluten-free lunches.
Coming Up…
Our next live webinar will take place on June 20, 2012 at 2 p.m. ET/11 a.m. PT. The topic will be “Yes, You Can Eat! When Gluten Isn’t the Only Ingredient You Avoid.” The webinar will feature NFCA’s Answers from a Dietitian blogger Melinda Dennis, MS, RD, LDN. Sponsored by Lucy’s.
How to Talk to Friends and Family About Your Child’s Dietary Needs without Scaring Them Off
[There’s an important step that everyone faces in their gluten-free lifestyle: Talking to family and friends about your dietary needs – or those of your child. For parents of gluten-free kids, it can be a particularly stressful time. We went straight to the source and asked Heidi Kelly of Adventures of a Gluten Free Mom for tips on starting those conversations.]
It seems like yesterday when my now 8-year-old son was diagnosed with celiac disease and within a split second, he went from being a carefree and “normal” 5-year-old Goldfish cracker and Happy Meal loving child to one who had to become concerned with a life-long condition that would end up affecting so much more of our life than we could ever possibly imagine.
A celiac diagnosis is a hard pill to swallow at any age, but it is not the end of the world. Once you get past the initial shock (and the first few weeks of trying to figure out exactly what you CAN eat), you will begin to realize that you can in fact navigate this beautiful, brave new world with your child. Looking back, I wish at the time that someone had pulled me aside and provided me with a few tips and tricks to make the transition easier. I hope to be that person for you now.
Heidi’s tips for talking to friends and loved ones about celiac disease:
1. Keep it Simple.
Celiac disease is a very serious and complex autoimmune disease, and it can be difficult for even physicians to fully comprehend the full nature of the beast. Resist the urge to conduct a mini medical seminar for each of your child’s friends’ parents, lest they send both you and child right back out the door! Keep it on a need-to-know-basis. After all, the intent is that your child will be invited back again, right?
How I go about explaining Sam’s medical condition and dietary needs to new parents, teachers, baseball coaches, etc., is to tell them he has celiac disease and must adhere to a strict gluten-free diet in order to maintain his good health. For simplicity’s sake, I compare it to a severe food allergy, only without the EpiPen. I do this because, in general, everyone understands the classic food allergy, and celiac disease is just as serious – albeit in a different manner – and the immune response is triggered by food. If Sam accidentally ingests gluten, there is no fear of anaphylaxis or a trip to the emergency room for the adult to worry about.
This is a very important balancing act! You want to convey the “strict” aspect of your child’s diet, but you also don’t want to scare parents/teachers/coaches away from wanting to include your child in the everyday fun activities of childhood. Remember, your celiac child is most likely just as healthy (if not healthier) as every other child,as long as he/she is eating the correct diet!
2. Educate Your Child
No one will be a greater advocate and watchdog for your child than him/herself. Depending on their age, you want to explain as much about their condition as they can possibly understand. There are a few really good books to help with this, and my absolute favorite is Mommy, What is Celiac Disease, by Katie Chalmers. Once your child can learn to confidently say “I’m sorry, gluten makes me sick,” half the battle is won. Or, as my 4-year-old so eloquently states, “No thanks, gluten makes my butt hurt.”
3. Everybody Knows Someone
With the prevalence and acceptance of food allergies today, almost everybody in your sphere will know of a child with a food allergy or intolerance, especially at school. You have to remember that your child’s teacher sees dozens of kids each year, has cafeteria duty for many dozens more, and has probably been to a continuing education seminar on the matter. Most of the parents you encounter at school will have known of a child in class from years prior who had a food allergy or intolerance.
Most will be sympathetic. In my opinion, it is important to let them be sympathetic. Everyone will react in their own way. The key is for you to keep a level head and not let it dominate every conversation you are involved in. And on that last point, I know…easier said than done.
Chocolate Gluten-Free ‘Goldfish’
4. Positives Are Better Than Negatives
Of course it is important to let people be aware of what your child cannot eat, but it is equally important to let people (and your child) know what they CAN eat. Your child can have a piece of fresh fruit. Your child can have baby carrots. Stay away from saying “no” as often as possible, and try to focus more on the “yes.”
For those special moments when a Happy Meal is in order, make a Mommy McMeal! Goldfish Crackers on the docket for snack day? Yep, you can make those gluten-free, too! Need a gluten-free Lunchable for that first day of Kindergarten? Easy peasy, my friend.
Don’t resign yourself to living without…instead, get your inner glutadoodle on and say to yourself, “Two can play at that game!”
5. There is No Substitution for Preparation
School snack, birthday parties, baseball games, etc. If people continue to see that you are prepared to deal with the food issues involved with these activities, they will be more at ease and more accommodating. They have to know that you are prepared to deal with it so that they don’t have to. Think about it, who would want to plan a gluten-free birthday party for their darling six-year-old just so your kid can attend? You have to embrace the fact that you are now the parent of “that” kid and let others know that it is a beautiful burden you are willing to bear.
The bonus? Before you know it, other parents will be asking “Just how how does she get her kids to ask for fruits and veggies instead of the [insert popular sugar-laden, gluten-filled kid fare here] for snack time?”
When all Else Fails…Laugh
Sometimes, you just need a good chuckle. I like watching this YouTube video from Better Batter: Stuff People Say to Celiacs.
– Heidi Kelly
5 Tips for Talking to Your Child About Celiac Disease & the Gluten-Free Diet
[Kathleen Reale runs BeFreeForMe.com, a website that offers coupons, samples and information for those with celiac disease and food allergies. In addition to having celiac disease, Kathleen also has family members with food allergies. We asked her for advice on breaking it down for the little ones.]
When you first discover your child has celiac disease, it can seem overwhelming. What foods to buy? How to cook? How to correspond with schools, camps and other social situations? But most importantly, how do you communicate with your child on what celiac disease is and how to navigate the gluten-free diet.
Following are a few tips and tricks to make gluten-free journey easier to navigate…and will help you and your child find a positive, optimistic way to better health and wellness.
1. Help Your Child Understand the Gluten-Free Diet
Depending on your child’s age, it is important that they understand the gluten-free diet and why they need to be on it. For younger children, start with the basics of the diet and expand upon the information depending on the child’s age. Encourage your child to ask questions. Need a springboard to get the conversation started? Check out some of the fantastic books in the resource section below!
2. Keep a Positive Attitude
Being on a gluten-free diet is not the end of the world. But for a child, it can seem devastating. Help your child stay focused on what the diet allows, rather than what it does not. Bring your child grocery shopping and allow them to select gluten-free foods they will enjoy. Encourage them to explore new foods, help with cooking, and even start their own garden. Getting children involved in growing, selecting and preparing their foods creates a sense of ownership and pride in the foods they can eat.
Remember also to keep a positive attitude yourself. Kids will pick up on your cues and the approaches you take. Start by being “positively prepared.” Some examples are researching gluten-free options before dining out or keeping frozen gluten-free pizzas and cupcakes on hand at all times. This shows your child that eating out, pizza with friends, and birthday parties are easy and simple.
3. Empower your Child
Your first instinct is to protect your child at all times. But depending on your child’s age, they may be in social situations that require them to take responsibility for the food they eat and their own health. Make sure that your child understands what “safe foods” are, how to read labels, and know that they can always call you for help in navigating their diet.
4. Role-Play Potential Situations
Talk to your child about potential situations that may arise that require them to address being on a gluten-free diet. Talking to your child about these situations, and problem solve them together. How should your child respond to a grandparent that says “just one” non gluten-free cookie is fine to eat, or what tactics will be used when your child is invited to a pizza party? This will equip your child to deal with some circumstances they may encounter. Most importantly, make sure your child understands that it is OK to persistently, but politely, say NO to gluten.
5. Some Resources to Help You and Your Child
Following are some resources to help you and your child start your gluten-free journey:
Books for younger children
- Mommy, What is Celiac Disease?, by Katie Chalmers
- Gluten-Free Friends: An Activity Book For Kids, By Nancy Patin Falini, RD
- Gluten-Free Kids: Raising Happy, Healthy Children with Celiac Disease, and Other Conditions, by Danna Korn
- Eating Gluten-Free with Emily: A Story for Children with Celiac Disease, by Bonnie Kruszca
Books for pre-adolescents
- The Gluten-free Kid. A Celiac Disease Survival Guide, by Melissa London
Also, make sure you check out Kids Central on the National Foundation for Celiac Awareness website for tons of support, information and tools for your gluten-free child. All the subjects are addressed in kid-friendly terminology. Some topics covered are the basics – such as what is celiac or what is gluten-free, as well some fantastic pointers on living a gluten-free diet from a child’s perspective including explaining celiac disease and the gluten-free diet to friends, or pep-talks from other gluten-free kids. The site is well worth exploring!
– Kathleen Reale
Attending a Celiac Disease Patient Conference: Part 2
Last week, I gave you a wrap-up of the food and people I encountered at the Intestinal Immune-Based Inflammatory Diseases Symposium at Columbia University on March 2-3. While I had a fine time networking and meeting others in the gluten-free community, my main reason for attending was to hear from prominent celiac disease researchers. Needless to say, I was an attentive listener.
The Education
The sessions in the Patient Program covered everything from the basics of celiac disease to the latest research in therapeutics. Here are a few takeaways that perked my ears:
The No. 1 cause of poor response to a gluten-free diet is gluten exposure.
7-30% of patients with celiac disease reported continued symptoms on a gluten-free diet. The reasons can vary, from lactose intolerance to bacterial overgrowth to microscopic colitis. But as it turns out, most people simply aren’t following the gluten-free diet as diligently as they should, or they are ingesting gluten unknowingly. Another factor can be having the wrong diagnosis, so doctors stress the importance of confirming an individual’s celiac diagnosis. Which leads into the second point…
1 room. 2 days. Lots of learning!
Reviewing biopsies is essential.
A few months ago, a study revealed that many gastroenterologists do not take a sufficient number of samples during a small intestinal biopsy. The presenter noted that several factors play a role in making a successful diagnosis: orientation, interpretation, number of biopsies and location. That means if too few biopsies are taken, or if the small intestine hasn’t been examined as thoroughly as it should be, it could affect the diagnosis that the pathologist makes.
Children are not little adults.
A proper celiac diagnosis is critical for child development. A child diagnosed with celiac disease early on will most likely grow to their full potential. A child diagnosed later in life may be permanently stunted from so many years of malabsorption. How exactly does this malabsorption affect their development? Iron deficiency can lead to poor concentration or irritability; calcium deficiency can lead to poor bone calcification and zinc deficiency can lead to growth failure and sexual immaturity.
There’s a lot to learn about the autism/gluten-free connection.
I was eager to hear Columbia’s presentation about the potential benefits of a gluten-free diet for those with autism spectrum disorders (ASD). It was the perfect build up to NFCA’s ADHD and autism webinar that took place the following day. While research thus far has been inconclusive, it appears that the gluten-free diet may help a subset of those with ASD. More research is needed to identify these subgroups and the specific proteins in gluten they’re reacting to.
Discovering risk factors is the No. 1 step to prevention.
There are a number of potential therapies currently being researched, and they each aim to accomplish one of three goals: Reduce exposure to gluten, reduce intestinal permeability or reduce immune activation. However, the question of how to prevent celiac disease remains. As healthcare turns from a model based on treating symptoms to one based on promoting wellness and prevention, we can expect this to be a focus. The answer lies in identifying more of the risk factors, because once researchers know what causes the disease, they can focus on ways to stop it.
– Cheryl
Celiac Central: Bits and Bites 