Caring for a Child with Celiac Disease

Advice for families and caregivers

Celiac disease is an inherited autoimmune disease in which eating gluten causes an immune system reaction in the small intestine. This reaction damages the surface of the small intestine, creating an inability to absorb nutrients that the body needs. One in every 133 people has celiac disease, but many are unaware that they have it. The main treatment is to avoid all traces of gluten.

Q&A for Special Needs and Celiac Disease

How do I find other parents of children with celiac disease?

There are support groups. You can meet other parents and families through Raising Our Celiac Kids, a support group for people in your situation

What are safe foods for people with celiac disease?

Safe foods include

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).

What foods contain gluten and aren't safe for people with celiac disease?

People with celiac disease must avoid foods containing gluten, but it's not always easy to detect. Many foods that don't appear to contain gluten actually do. Other gluten-free foods can become contaminated if prepared on the same surfaces as foods containing gluten. Unfortunately, even trace amounts of gluten can trigger the immune system reaction and damage the intestine.

Here are some foods to avoid:

All wheat products, such as

Farina
Graham flour
Semolina
Durum
Bulgur
Kamut
Kasha
Matzo meal
Spelt
Triticale

Barley

Rye

Oats -- because they usually have been processed with foods containing gluten, and therefore become contaminated.

What foods contain ingredients people with celiac disease need to avoid?

You must avoid standard versions of:

Breads
Cereals
Cakes
Pies
Cookies
Pasta
Crackers
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

What are special celiac considerations to be aware of when eating out?

It is best to call the restaurant in advance and speak to the chef to make sure there are options for your family. Sometimes, if chefs know in advance that a person on a gluten-free diet will be coming, they will prepare something special. Since so many people are avoiding gluten these days, many restaurants have gluten-free menus available. See if any restaurants in your area have them. If a gluten-free menu is not available, keep these pointers in mind when ordering:

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.

What should we bring when we're going out and will need to eat?

It's always helpful to bring along supplies of peanut butter and jelly on gluten-free bread or crackers. Other options are gluten-free cold cuts instead of the peanut butter. That way, if you don't find any appropriate restaurants, you'll be okay.

What celiac-safe, gluten-free snacks won't stand out? My child wants to blend in.

Always check the ingredients of any particular items, but you may find safe versions of:

Rice crackers or cakes
Fruit
Vegetables
Tuna
Eggs
Chips (potato, corn or soy)
Popcorn
Corn nachos
Taquitos
Corn Tamales
Nuts
Cheese
Cottage cheese
Fruit rolls
Seeds (pumpkin, sesame, sunflower)
Hummus
Dried fruit
Marshmallows
Chocolate
Jello
Corn quesadillas
Puddings
Custard
Yogurt
Juices that are 100 percent fruit
Milk
Hot chocolate made from pure cocoa butter
Tea
Coffee
Most carbonated drinks

Do manufacturers notify customers when they add gluten to previously gluten-free products?

Unfortunately, manufacturers do not have to warn customers and may change ingredients at any time. Therefore, every time you purchase an item you need to read the ingredient list. As soon as your children learn how to read, teach them to check labels. This is an important habit, as looking for gluten in the ingredients will be a life-long necessity.

Celiac disease and summer camps -- are they safe?

Kids with celiac disease can attend gluten-free summer camps in which meals served do not contain gluten.

My daughter's favorite foods contain gluten. She is angry about the gluten-free diet. How should I handle this?

Anger is a frequent reaction to having to give up favorite foods. Eventually your daughter will come to terms with this loss, but it may be a difficult transition. Many children and adults go through a grief reaction. Empathize with the sadness, experiment with her favorite foods using substitutes for gluten, and calmly explain to your child about the harm gluten does to her body. Most kids gradually begin to enjoy the food substitutions. You and your daughter might both benefit from joining a support group. The National Foundation for Celiac Awareness (NFCA) runs Raising Our Celiac Kids (R.O.C.K.), free support groups for parents, families and friends of kids with celiac. Check to see if there is a celiac support group in your area.

What are the positive side-effects to the gluten-free diet?

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.

How can I convince my child to stick to the gluten-free diet if his celiac disease has been controlled for years?

This is a difficult situation, especially since your child probably really wants to be just like the other kids. Remind him that before he was on the diet he had certain symptoms and was very uncomfortable. Explain that even though he is symptom free now, the disease is still there and at the first appearance of gluten, the symptoms will return. Perhaps connecting him with other children in the same situation will help. Check to see if there is a celiac support group in your area that he can participate in.

What do I do to help my child with celiac disease when there are school birthday parties?

It is true that not being able to have birthday snacks like the other children will be difficult for your child. Here are some things you can do that may help.

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.

Should I create a gluten-free household?

When one person in the family has celiac disease it affects everyone. Doctors usually recommend that the home become gluten-free. This will involve explaining the situation to the whole family and setting up clear rules about what can be brought into the house.

How do siblings of kids with celiac disease handle a gluten-free home?

Of course, most siblings will resent being forced to follow the food restrictions while at home. You may want to help mitigate this by:

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.

How do siblings and other children feel about a gluten-free home and celiac disease?

Kids may have a range of reactions. It's helpful to give them permission to have varied reactions. Do not express disapproval of their responses and do let your children know that you understand and accept their feelings. Here are some of the reactions siblings have:

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.

What should I do when my child with celiac disease goes to play at a friend's house?

You can't always expect neighbors, relatives, and friends to have gluten-free products on hand. One solution is to send gluten-free snacks along with your child (enough for any other children who may be playing at the home). If the other kids are willing to eat those snacks, your child won't feel deprived. If they aren't willing, at least your child will have something that is safe to eat.

How can I find others with celiac disease and on gluten-free diets?

Many people with celiac disease find support groups very helpful. These groups:

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.

How should my child with celiac handle trips, vacations, and school functions?

Here is what one teen with celiac disease counsels:

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.

How can I make gluten-free recipes for children with celiac disease?

Here are some suggestions for adapting recipes offered by the Mayo Clinic:

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's friend said her gluten-free food was gross and now my daughter won't eat it. What should I do?

That's tough. Unfortunately, it happens frequently to kids with celiac disease. You can empathize with her that it isn't fair, that life isn't fair and that we have to make the best of things. You can also suggest that she join a support group, as it sounds as if she would benefit from being in touch with other kids in her situation. You, too, could probably benefit from a support group for other parents dealing with these issues, such as R.O.C.K. (Raising Our Celiac Kids).

What are the pros and cons of telling others about celiac disease.

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.

I need support for the unique stresses I face as the parent of a child with celiac. Are there groups for me?

Yes, and joining a group should be very helpful. Raising Our Celiac Kids is a support group for people just like you.

How can I find someone to care for my child with special needs?

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com.

Other resources for Special Needs and Celiac Disease

National Foundation for Celiac Awareness

Raising Our Celiac Kids (ROCK)

Mayo Clinic on Celiac Disease

Find the right special needs caregiver for your family.