CHILDREN AND GLUTEN
CHILDREN AND GLUTEN – Overview
Does My Child Have Celiac Disease Or Gluten Intolerance?
If you are reading this guide, your child likely has one or more of the following malabsorption symptoms:
Diarrhea
Distended belly
Failure to thrive
Irritability
Muscle Wasting
Short Stature
Sleep Disturbance
For a list of other symptoms associated with celiac disease, click here.
The only way to determine whether your child has celiac disease or wheat allergy is to test. If symptoms continue, and your child does not have either health condition, the assumption is he or she has non-celiac gluten sensitivity (gluten intolerance).
To get a proper test, your child cannot stop eating gluten, no matter how difficult that is. Your child must undergo a gluten challenge for the tests to work. If there is no gluten in the body to react to – there is no way to test.
While there are several home tests, it is best to think of them as a starter for your primary care physician who will take a blood test. If the blood test administered indicates the possibility of celiac disease, the gold standard for testing is to then undergo an endoscopy.
To learn about testing, including home tests, look at Testing For Celiac Disease.
Given an awareness that gluten may be causing your child to have the symptoms he or she is having, people have been known to consider just stopping the eating of gluten – without a diagnosis. This is not a good idea. You may be consigning your child to the daily challenges of eating gluten-free for the rest of his or her life for no reason.
TIPS
If your child gets symptoms close to a time when you are aware that gluten was ingested, start keeping a symptoms journal. Include the date, the food or drink ingested, a description of the symptom, and the severity. Take the journal with you to each medical appointment as well as appointments with a dietitian/nutritionist.
If a physician tells you to just feed your child gluten and see if he or she feels better – get another doctor.
If the tests come up negative, yet you find that keeping your child off gluten makes him or her feel better, then keep your child off gluten.
Remember to pay attention to nutrition and be sure your child eats a healthy diet.
Don’t go it alone. Look for someone who is in or has been in your situation, for example, through one of the national celiac organizations or in support groups.
Testing For Celiac Disease In Children: When To Start, When To Repeat
Children should be tested at the first signs of celiac disease. If celiac disease runs in your immediate family, children should first be tested by age 3. Children should then be tested every 3 years.
As with adults, testing starts with a blood test – lgA and lgA tTG. If tTG is positive, an endoscopy by a pediatric gastroenterologist is the next and final step for a diagnosis. There is an option in some cases to confirm a diagnosis without an endoscopy. This will need to be discussed with a pediatric gastroenterologist.
After an initial diagnosis, follow-up visits should occur at 3-6 months and 12 months. Follow-up visits should then occur annually. For a checklist to take with you to the follow-up testing, see Celiac Disease Foundation.
TIPS
For patients with family members who have celiac disease – even if the children have no symptoms, many pediatricians recommend regular screening for celiac disease every two or three years starting at age two. More frequent testing may be advisable if there is a change in the family medical history or a change in the patient’s medical history.
If any of the listed symptoms appear and persist, report to your pediatrician. Let him or her decide whether it is time for a visit – and a test. If the doctor declines and you are still not comfortable, advocate for testing. Experience indicates that there are many pediatricians who are not experts about celiac disease.
It is preferable to not start your child on a gluten-free diet without testing. Gluten-free tests require gluten in the system. The amount of time gluten has to be in the system varies depending on the test and the testing doctor or organization.
If the tests are negative but the symptoms persist, try a gluten-free diet. Your child may have gluten intolerance.
How To Help Your Child Transition To A Gluten-Free Diet
In General
According to research, successful adaptation to a chronic illness for children depends on the child’s ability to take control, the severity/prognosis/functional status of the condition, whether families are empowering and support.
Early training in a gluten-free diet and self-empowerment are critical. While you cannot change a child’s characteristics, you can work to maximize his or her acceptance of the medical situation and the diet.
To make it easier on your child consider the following (in no particular order:)
Try to eat together – and everyone eat the same foods. Even better if you make the food delicious.
Think about your child’s favorite foods and how to make them gluten-free.
Explain about gluten, and where it is found with words suitable for the child’s age. Review the foods in our list of foods that are gluten-free and those that contain gluten – including ingredients.
Explain that even if they don’t have immediate symptoms after eating gluten, that doesn’t mean there is no harm inside.
Take your child shopping with you and teach the basics.
Help your child think of what to say if another child or adult makes fun of eating gluten-free.
Food For Children
Look for gluten-free versions of your child’s favorite foods as well as the foods your child’s friends tend to eat. As a starter, see the following linked articles: Woman’s Day and Beyond Celiac, Celiac.org has Seven Day Pediatric Gluten-Free Meal Plans
For ideas about packing a school lunch, check Celiac Kids Connection
If you haven’t already, introduce your child to a wide variety of fruits and vegetables. If he or she has trouble being introduced to a new fruit or vegetable, repetition (say up to 12 times) helps overcome a reluctance. Buying local fruits and vegetables may be less expensive and also help your neighbors, but don’t forget fruits and vegetables that are not grown locally. The darker the fruit and vegetable, the more cancer fighting properties it has.
Children’s Toys
Children’s toys and other play products may contain wheat. Aside from the possibility of putting a dirty hand in a child’s mouth, there is the additional possibility of dirty fingernails, or not washing hands before eating.
Labelling laws about gluten do not include children’s toys. A prime example of a children’s product in which wheat is a major ingredient is Hasbro’s clay-like product, Play-doh ®. There is also modeling clay that contains gluten. Elmer’s Finger Paints contain both wheat and oats.
Gluten-free products to consider:
Craft Paste
Elmers Craft Bond Tacky Glue
Crayons – are generally gluten-free
Finger Paints
Colorations Washable Finger Paint
Crayola Washable Fingerpaint
Glue
Coloration’s Washable School Glue , glitter glue and glue sticks
Elmer’s glue products
Markers – generally gluten-free
Paper Mache Mix
Amaco makes a gluten-free Claycrete paper mache mix
Pencils are generally gluten-free
Finger paint and stickers
Play-doh substitutes:
Aroma Dough
Colorations Wheat and Gluten-Free Play Dough
Crayola Model Magic (not Crayola Dough)
Gluten-Free Wonder Dough
Max’s Mud is a gluten-free sculpting dough
Soy-yer dough
If you find additional products without gluten, please let us know at info@charliestableoasis.org
Eating In Restaurants With Children
Celiac Kids Connection has a video that provides tips for ordering in a restaurant geared toward newly diagnosed children and their families.
Summer Camp
There are summer camps for children who have to eat gluten-free. Gluten Intolerance Group has a list.
Support and Connection With Like Parents And Children
For help, for both you and your child, there is a variety of in-person and online support. For instance, see the following. (For age specific ideas, see our content about different age groups below)
Gluten Intolerance Group has a program titled “Generation GF” that includes educational resources and local support groups with events for kids and a chance to meet other young people like them.
RaisingOurCeliacKids.org (R.O.C.K) includes games for children. There is a list of R.O.C.K chapters at Celiac.com
National Celiac Association lists support groups around the country
In the Boston area, see CeliacKidsConnection.org
If you know of additional support groups for children, please let us know by emailing: info@CharliestableOasis.org
Guilt
If you have celiac disease, and one or more of your children also has celiac disease – and you have guilt about it – keep in mind that while your genes may be the cause, it is not your fault.
You did a wonderful thing bringing this human being or beings into existence.
There are so many things to be grateful for.
With the use of a diagnosis as a wake-up call to live a healthy lifestyle, you’ve actually given your child a gift. Sure, eating gluten-free 24/7 isn’t easy, but neither is living a totally healthy lifestyle. Your child has the incentive – and will hopefully use it.
To learn how to help your child through various stages, see:
To help yourself, reach out to other parents in your situation. An easy way is through Charlie’s Oasis. Consider joining a support group. In a support group, you’ll get a place to share your feelings and get support. Support groups are also a great source of practical information.
To learn more, see our following articles:
Infants
Introduction of gluten containing baby food/ breastfeeding:
Breast feeding does not influence the development of celiac disease.
The American Academy of Pediatrics recommends mothers breast feed exclusively for about six months and then introduce nutritious, complementary foods while continuing to breast feed. Dr. Peter Green suggests that after six months: be careful not to give large amounts of gluten within the first two years.
If you have celiac disease: Keep in mind that celiac disease is genetic. There is general agreement that introducing gluten too early can increase the risk of celiac disease in genetically predisposed babies.
Ask your physician how often to follow-up with him or her.
TIPS
It helps to have a close relationship with both a dietitian and your gastroenterologist
It is advisable to be closely monitored during pregnancy to be sure you maintain proper micronutrient levels and normal anti-tTG antibodies. If you have celiac disease, a prompt diagnosis can prevent devastating consequences.
Don’t be surprised if you follow a gluten-free diet strictly, yet feel such symptoms as nausea or abdominal pain. They are symptoms related to pregnancy as well.
Ages 0 – 5
As a general matter, research indicates the best time to introduce gluten to an infant’s diet is between four and six months of age.
As a general matter, at this age parents have control of what a child eats. If a child has only been exposed to gluten-free foods, then the child has a different sense of what is “normal.”
The way you and your immediate family respond to your child sets the groundwork for acceptance, compliance and self-empowerment.
Start good eating habits while the child is young.
Teach by words and by example.
Teach about the gluten-free diet – what is acceptable and what is not. Even if you or the other family members don’t have to, if everyone ate gluten-free, it would be the norm.
Look for gluten-free versions of foods and snacks as close as possible to what your child’s friends are eating.
If your kitchen isn’t gluten-free, consider making it gluten-free. If not, at least teach about the gluten-free food areas in the kitchen and about cross-contamination from cross contact.
Take your child shopping with you.
Keep in mind that diapers may contain wheat-pulp.
Talk with other parents going through the same thing. While it is easy to do so over the internet, also look for parents in your immediate area, for example through a Meetup group. To learn about other groups, see Support and Connection With Like Parents And Children
Ages 6 - 11
With your child in school, the rules change. You will no longer be in control – your child will be subjected to all kinds of social pressures. The way other children eat will be front and center.
Studies indicate that one of the most difficult times for children is during educational transition: from nursery school to elementary school; grade school to high school and high school to college. Children are exploring themselves during those transitions.
Make the school aware of your child’s condition and needs. We provide suggestions about how to do that below. Keep in mind that under law, your child is entitled to necessary accommodations under what is known as a 504 plan – which is also discussed below.
Make other parents aware of your child’s situation and needs. Remind them that celiac disease and gluten intolerance do not define who they are. Celiac disease and gluten intolerance are just medical conditions requiring that a child eat gluten free – no different from children who have to eat sugar free or kosher or any other diet.
Give your child some responsibility about his or her own food.
Help your child feel more comfortable by focusing on what is safe to eat rather than just on what has to be avoided.
Help your child learn to anticipate his or her own needs – and to plan for them. For example, how to respond to accidental ingestions of gluten – including while in a setting such as school or in a house of worship.
Remind your child that he or she is not celiac or gluten intolerant – but a person with one of those health conditions – and that every person is different. We are lucky to live in a country that celebrates differences.
Look for peer support for your child – whether in an actual support group (in person or online) or one on one. A variety of support groups and programs is described in Support and Connection With Like Parents And Children
Preparation, good communication and pre planning are essential to help your child take care of their own needs and to thrive in different environments. It is also important to encourage your child to make healthy and safe decisions about his or her dietary habits. This isn’t about lifestyle: this is real life.
Remind your child to be sure not to be glutened by trying to fit in – for example, by eating a piece of birthday cake or a parent’s treasured recipe - take food when going to other people’s houses or attending a party.
Think about helping your child be prepared in case someone ribs him or her about having to eat gluten-free.
Keep in mind all the various settings in which your child will eat food, including the school cafeteria, sporting events, outings such as Scouts and friends’ houses. Plan ahead for each of these settings.
For information about school, see the School section, below.
Ages 12- 18
Teenage years can be a difficult transition for both parents and children. Studies show that adolescence is a major transition period where most breaking of the diet occurs.
A main goal during teenage years is to blend in with peers. It’s difficult to blend in, yet eat differently.
It takes a strong, mature teenager to not give in or compromise their diet. It gets even more complicated with dating – particularly first dates.
Walk your child through the need to eat gluten-free – just as you talk about sex, or safe driving. It is understandably harder if there have been no visible symptoms. Your child must come to trust that the diagnosis is correct -- and eating gluten-free is crucial. If needed, seek professional guidance or the help of another parent.
Keep in mind that for a young person, change can be scary – even a change that will eliminate difficult symptoms.
A study from Tel Aviv University found a link between celiac disease and a higher incidence of disordered eating behavior during adolescence and young adulthood. Early recognition can prevent the deterioration of disordered eating into full-blown disorders such as anorexia nervosa and bulimia. If there is suspicion that your child may be developing an eating disorder, speak with a registered dietitian. Also consider referral to a psychologist or psychiatrist.
Encourage your child to anticipate and prepare.
Work through with your child how to handle invitations to parties and dining at someone else’s house. Look at our suggestions about Eating In Other People’s Homes, at school and other parties and teach them to your child.
Teenagers, particularly teenagers involved in sports, can have large appetites. Keep plenty of healthy food and snacks on hand.
Teach your child how important it is to eat healthy - not just gluten-free.
It is likely not a surprise, but keep in mind that many celiac adolescents begin to resent not only the disease, but the parents as well.
Depression and anger from feeling isolated, embarrassed and frustrated because of feeling different, can lead to depression and anger – which can lead to non-compliance or worse. The result of non-compliance can be disastrous, particularly if it affects the brain. Statistically, the mortality rate is three times higher in these adolescents than in a celiac population diagnosed in adulthood. The increase is primarily due to suicide, accidents and violence. Researchers speculate that a high proportion of teenage non-compliance with a gluten-free diet has been actually to blame. If all else fails, seek intervention with a professional.
For information about colleges, click here.
TIPS
Ask your gastroenterologist, dietitian and any other professional you work with to shoulder some of the work of keeping your child compliant with a gluten-free diet.
Involve family members to encourage – and perhaps share - a gluten-free diet. If the entire family eats gluten-free, the child will feel less left out.
Look for socialization opportunities with celiac peers – and opportunities for you to interact with other parents. To help find parents to talk with and support groups for you and your child, see Support and Connection With Like Parents And Children above.
Ask your teenager to read our guide about teenage years for a teenager. Also consider suggesting that your child read our guides about eating in other people’s homes and parties.
After reading through this section, you may think your child is
likely to suffer through these years because of gluten. Jessica Hanson/Tasty Meditation, asked young people for their thoughts about living with their health condition. Click here for their answers.
The Teen Years – From A Teenager’s Perspective
Eating exclusively gluten-free can be particularly challenging during your teenage years. In fact, studies show that this period of time is where most breaking of the diet occurs.
It takes a strong, mature person not to give in or compromise when it comes to eating gluten-free. It gets even more complicated with dating – particularly first dates. We get that. But – it is worth it. And it does get easier. Truly.
If you read our guides about Just Diagnosed With Celiac Disease or gluten intolerance you’ll see why it is so important that you eat a 100% gluten-free diet. Yes it is possible if you have gluten intolerance to eat gluten once in a while, but are the few times you eat with no problem really worth the time when you get digestive problems, and maybe some fatigue and joint pain frequently at a really awkward moment?
It bears repetition. It does get easier.
There are plenty of great snacks you can carry with you, and easy-to-make and frozen meals available.
If you want to eat the same foods as your friends, there are generally gluten-free versions available – including cupcakes and cakes.
It can be frustrating to hear from other people who learn you are on a gluten-free diet tell you how wonderful the diet is. They know about the diet from all the people who eat it as a lifestyle choice. Just keep in mind that they mean well.
If it makes it easier, just tell people you eat healthy. If they ask why, you can tell them about your health condition without having to get into what eating food containing gluten does to you.
If you’re going to a party, read how to make it easier. If you will eat in someone else’s home, click here.
Eating differently than other people can lead to depression or anger from feeling isolated, embarrassed and frustrated because of feeling different. If any of these feelings become a problem, talk about it –with your parents, possibly with a social worker, psychologist or psychiatrist. The nurse at school may be a good source of help – or at least guidance about who to speak with.
For information about colleges, from choosing to maximizing time in, click here.
For information about dating, click here.
TIPS
Look for other young people in your age range who also have to eat gluten-free. If not gluten-free, perhaps another way of living that is also different from the rest of your peers. Perhaps an orthodox Jew.
It may help to keep a journal. A journal helps get your thoughts out and process all the changes and first experiences of being gluten-free.
Consider asking the people you live with to eat a gluten-free diet. If the entire group eats gluten-free, you’ll feel less left out.
Look for socialization opportunities with celiac peers. If there’s no group of young people with celiac disease or gluten intolerance, think about starting one. To find people online or near you, see our article: How To Help Your Child Transition To A Gluten-Free Diet