Caring for a Child with Celiac Disease
Advice for families and caregivers
What are safe foods for people with celiac disease?
What foods contain gluten and aren't safe for people with celiac disease?
What foods contain ingredients people with celiac disease need to avoid?
What are special celiac considerations to be aware of when eating out?
What should we bring when we're going out and will need to eat?
What celiac-safe, gluten-free snacks won't stand out? My child wants to blend in.
Do manufacturers notify customers when they add gluten to previously gluten-free products?
Celiac disease and summer camps -- are they safe?
My daughter's favorite foods contain gluten. She is angry about the gluten-free diet. How should I handle this?
What are the positive side-effects to the gluten-free diet?
How can I convince my child to stick to the gluten-free diet if his celiac disease has been controlled for years?
What do I do to help my child with celiac disease when there are school birthday parties?
Should I create a gluten-free household?
How do siblings of kids with celiac disease handle a gluten-free home?
How do siblings and other children feel about a gluten-free home and celiac disease?
What should I do when my child with celiac disease goes to play at a friend's house?
How can I find others with celiac disease and on gluten-free diets?
How should my child with celiac handle trips, vacations, and school functions?
How can I make gluten-free recipes for children with celiac disease?
My daughter's friend said her gluten-free food was gross and now my daughter won't eat it. What should I do?
What are the pros and cons of telling others about celiac disease.
I need support for the unique stresses I face as the parent of a child with celiac. Are there groups for me?
How can I find someone to care for my child with special needs?
- Fresh meat, fish, fruit and vegetables
- Eggs and cheese
- Rice, corn, soy and potato products
- Flours made from rice, corn, soy and potato--not from wheat, rye or barley
- But, even with "safe" food, when dining out you must always make sure that food ordered hasn't been marinated or coated with any other ingredients, that it hasn't been dusted in flour, and that no sauce has been used in preparing it, as sauces usually contain some flour (which contains gluten).
Here are some foods to avoid:
All wheat products, such as
- Graham flour
- Matzo meal
Oats -- because they usually have been processed with foods containing gluten, and therefore become contaminated.
- Gravies and sauces (unless they are homemade by a person aware of the gluten problem)
- HVP (Hydrolyzed Vegetable Protein) and HPP (Hydrolyzed Plant Protein)
- Malt and Malt flavoring
- Modified wheat starch or other unidentified food starch
- Bouillon (which often contains gluten)
- Cocktail sauce
- Soup stocks
- Sliced or processed meats
- Worcestershire sauce
- Baking powder
- Salad dressings
- Check all ingredients of any items on the menu
- Check the way the food was prepared
- Check that the preparation surface and any pots or pans used were completely cleaned before preparing this item. If not, it may have been contaminated with gluten.
- Never assume that anything in a restaurant is safe. Always ask. Even corn chips may have been fried in a pot that had been used for flour tortillas, and a turkey may have been injected with something containing gluten before being cooked. Eggs, for example, are normally a safe choice, but you must be sure they weren't prepared on the same grill as the pancakes. And if you see them on a breakfast buffet, find out what other ingredients were used to prepare them.
- Rice crackers or cakes
- Chips (potato, corn or soy)
- Corn nachos
- Corn Tamales
- Cottage cheese
- Fruit rolls
- Seeds (pumpkin, sesame, sunflower)
- Dried fruit
- Corn quesadillas
- Juices that are 100 percent fruit
- Hot chocolate made from pure cocoa butter
- Most carbonated drinks
We thought my child had an irritable personality and difficulty concentrating, but now that he has been on the gluten-free diet for six months, those characteristics have all disappeared. Is it possible that they were symptoms of celiac disease? Yes, it is possible, and many other parents report the same pattern of symptoms and changes.
- Try to have a conversation with your child's principal, teachers, and school nurse before school begins. Explain your child's health condition, the foods that must be avoided, and ask if you can be alerted you in advance when a child will be bring birthday snacks to school. That way, you can send an alternative snack with your child that will mitigate the deprivation of not being able to eat what others kids are having.
- If the teacher feels that the need to alert you will be too onerous, offer to give the teacher bags of safe chips to keep for your child to eat when a birthday celebration occurs.
- With your child's permission, offer to educate the students about celiac disease so that the other kids may be more sensitive to the issues your child faces. Explaining that just a tiny bit of gluten actually damages your child's intestine may help them understand why having a birthday cupcake "just this once" is not possible.
- Joining a support group with other kids in the same situation may help your child.
- Scheduling time to take the other children out for special treats that are not allowed in the house.
- Encouraging your other children to ask their sibling what having celiac disease is like, how he is feeling, what it is like to see so many doctors.
- Inviting your other children to become part of the solution. This will help give them a sense of mastery over the situation and feel included rather than left out.
Ask your other children to:
- Help shop for gluten-free products
- Help cook new recipes
- Taste the new recipes to offer their opinions
On the positive side, children involved in appropriate levels of caretaking responsibilities at home often develop more empathy than other children.
- Some feel vulnerable and worry that they or their parents will develop an illness. They may become phobic, sure that the slightest pain is the symptom of something serious.
- Some worry about their sibling who has the disease.
- Some are angry that their sibling receives so much attention.
- Some feel guilty, fearing that they caused the disease.
- Some wish they had the disease, so they could get all the attention.
- Offer the perspective of others in the same situation
- Are places where people can share tips on how to deal with a difficult situation
- May give advice on how to adapt recipes to make them taste better.
- Planning in advance can help decrease stress on the trip.
- Try not to let food concerns prevent you from enjoying the trip.
- Contact the teacher in charge to find out where the group will be eating. Many others with food concerns will probably be contacting the teacher, as well.
- Contact the restaurants where the group will eat, and find out if they will be serving anything safe. If you will be staying at a facility like a camp, get the phone number of the camp chef. Most chefs are used to dealing with people who have celiac disease.
- Bring along gluten-free cereal in Ziploc bags that you can have for breakfast. If you eat this cereal in your room beforehand, you'll most likely be able to grab some fresh fruit at the group breakfast, or even possibly order eggs.
Substitute any of the following for one cup of wheat flour:
- 1 cup plain cornmeal, fine
- 3/4 cup plain cornmeal, coarse
- 3/4 cup rice flour
- 5/8 cup potato flour
It may be helpful to bake longer and at a lower temperature when using these substitutions. You will have to experiment with combining different ingredients at different temperatures to find what works best for your family in your oven.
Substitute any of the following for 1 tablespoon of wheat flour:
- 1 1/2 teaspoons cornstarch
- 1 1/2 teaspoons arrowroot starch
- 2 teaspoons quick-cooking tapioca
- 1 1/2 teaspoons potato starch
- 1 1/2 teaspoons rice flour
My daughter isn't sure whether to tell everyone in her class about her condition, or just her best friends. She doesn't want to be labeled as "that strange kid with a food allergy." Is there a right answer here?
Some pediatricians recommend that children do not tell everyone in their class in order to avoid being ostracized, while others recommend not hiding it. Your child will have to do what feels right to her. She might try one solution one year and then adapt it the next year, based on the reactions she received in the past and on her own maturation. Perhaps keeping it a secret would work best at one age, and then being upfront about it might work when she feels more confident. Let her be your guide.