Telling a young child he or she has celiac disease
When explaining celiac disease to a very young child, keep it simple. Explain to your child that the doctor found out what had been making their tummy sick. Certain foods are made with an ingredient called gluten that hurts your tummy. Let the child know that this is a good thing because now the doctors can help you make everything better. Also let him or her that from now on he or she can't eat anything with gluten in it. Not even crumb (or show them a tiny bit with your hand).
At this point you might explain that the old bread/cookies/crackers they were eating have gluten. For almost anything they can't eat, you will be able to create a safe, gluten-free option. If at all possible, try to have a few samples of gluten-free cookies/crackers/candies/chips available.
There are several kid friendly snack foods that are gluten-free and it reassures them to see that they can still eat potato chips, gluten-free candy and so on. Tell your child that you are learning more and more about foods that are safe for him or her to eat everyday.
Telling an older child
Be factual in your description, but still upbeat and positive. "We have good news! We found out what has been making you sick. It turns out you are intolerant to gluten which is an ingredient found in many things. The doctor says that once you stop eating the foods made with gluten you will feel better. A lot of the food you were eating contained gluten as an ingredient, but there are still many that do not. You will have to be very careful about not eating any food you do not know is safe. The smallest amount of gluten in your diet will keep you sick even if you don't feel as sick anymore."
At this point show your child a pile of gluten-free foods- some new versions of unsafe items and some "normal foods" that happen to be gluten-free. Finding where the gluten is hiding is a bit like a backwards treasure hunt—you have to read ingredient labels to see if you can find it under the many names it can disguise itself as.
Let the child know that as you are learning about what is safe and what is not, it may take a while to find a safe version of all their favorite things, but it will be possible in time.
Telling an adolescent or teenager
An adolescent is emotionally ready to process a celiac disease diagnosis. Don't forget to go over the increased chances of getting other diseases if the diet isn't followed.
Get your child to start reading labels and calling companies right away to learn about their favorite snack foods. Remember it's their disease, so they need to have some ownership of it. Talk about strategies for school and friends' homes.
Go online to celiac websites and food manufacturers together. Have your child pick some things that look good and research the disease together. Ask your teenager to download some information for you if they find anything interesting.
Talking to relatives and friends
By Tracy Keegan
Teaching yourself and your child about the diet may not be the hardest thing you have to do: Getting relatives and friends to understand the seriousness of the gluten-free diet may be harder than you think.
Types of reactions
You may be meet with a somber reaction from friends or relatives when you tell them your child can't eat the foods they are offering your child. Some may not believe you or accuse you of exaggerating the situation.
What you can do
Just as you had a learning curve in understanding the nuances of the gluten-free diet, so will others. Gently reinforce the types of foods that are not safe.
Do not have your child stay with anyone that belittles the importance of your child staying on a strict gluten-free diet. Showing them the statistics that reveal the increased risk people with celiac disease have for developing other diseases, such as diabetes and cancer, can help. Remind people that when children with celiac disease consume gluten they compromise their chances at full growth and healthy development physically and intellectually.
Emotional adjustment for siblings
A chronic childhood medical condition is a family medical condition. Celiac disease affects every aspect of a child's life, as well as the lives of the parents and any siblings. The adjustment of siblings to a celiac- friendly home and lifestyle can often be under recognized, especially when the child with celiac disease gets a fair amount of parental attention.
Meeting all the needs of your child with celiac disease can seem to use all your energy and focus. However, being the sibling of a child with celiac can have its own effects, and with attention, can ultimately be a growth-enhancing experience.
Research shows that working together as a family to manage the daily demands of incorporating a gluten free diet into a home can have a positive influences on self-esteem, resilience and family closeness.
Some common feelings among siblings of children with celiac disease:
Guilt: Some siblings may feel guilty that they can eat whatever they like and their sibling is forced to keep a strict diet.
Anger and/or jealousy: Because monitoring the food choice and health of a child with celiac disease can be time consuming, some siblings may become resentful of the attention paid to their brother or sister with celiac disease. Deliberately planning separate and protected times with siblings can help your other children feel equally as important as their sibling with celiac disease.
Resentment: siblings can feel resentful if they are asked to make compromises for the brother or sister with special dietary requirements. They may feel that it isn't fair that just because a sister has celiac, they have to live as though they do, as well.
Fear: Children who have a sibling with celiac may be frightened that they too could have the condition.
Younger siblings, in particular, usually need basic information about celiac such as, how did my brother get it? Did I have anything to do with causing it? Will this happen to me or someone else? Is it contagious? Direct and clear information is the most useful.
Children often adjust best when they feel a sense of mastery over the information given to them; including siblings in the daily management of the celiac demands is a great way to involve them and demystify the experience. It can also help prevent the sense that there is a conspiracy to keep this medical "secret" between just the parent(s) and their brother or sister.
Communication is key. There is no reason to present highly medical or technical information, sharing basic information that a sibling can use is the best route. Encourage siblings to ask questions of the child with celiac to help them better understand what it's like to live with the condtion.
Things you can do to help
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Demystify the celiac disease as much as possible. Invite sibling to come to doctor's appointment or lab visits, so they can see what the office is like and get a better familiarity and comfort level with their sibling's experience.
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Give siblings something to do to help with the demands. Involve them in cooking new recipes, going grocery shopping at specialty food stores. Research also shows that children who are exposed to appropriate levels of caretaking at early ages are likely to develop a healthy sense of empathy.
