Celiac Disease Program

Packing tips

Going away for the weekend? Is your child with celiac having a sleepover at a friend's house? Sometimes these plans happen last minute and the best way to prepare for an unexpected event is to always be ready. This can be done as part of your regular grocery shopping and day-to-day cooking.

Here are some tips to help make unexpected events a little easier.

Plan Ahead

If you have an extra freezer this can be especially helpful. When you are making a big meal or dessertsmake a little extra or put the leftovers in "to go" containers and freeze them.

Keep easily accessible snacks on hand so that you have something to curb your child's appetite if he gets really hungry and can't find a safe place to stop for a bite.

An easy way to pack any of these items is with a soft-sided cooler and ice packs. Coolers with more than one compartment are ideal so you can keep items that don't need refrigeration dry.

When you do have a place to store refrigerated items and/or a place to cook and heat food

• Pack a salad and bring some individual packages of dressing.
• Gluten-free popcorn is an easy snack item and easy to pack, too.
• Single serve applesauce.
• Gluten-free pasta with jar sauce (sauce can be frozen in small single serve sizes.)
• Put pre-measured uncooked rice with a chicken bullion cube in a zip lock sandwich baggie for no measuring.
• Yogurt
• Cheese (precut or small pre-wrapped cheese cubes)

When you do not have a place to store refrigerated items

• Grab a 'to go' container of frozen food from the freezer. If it is for lunch, take it out of the freezer the night before.
• Gluten-free trail mix is a great snack to keep on-hand.
• Gluten-free snack bars and cereal make easy snacks
• Any other freezer snack items such as brownies, cookies, muffins, etc. are also easy to bring along. If the brownies or cookies don't defrost by the time you are ready to eat them it's ok since many times they taste better frozen.

* In the winter, you can also keep your food in the trunk of your car for refrigeration. 

Traveling with a child with celiac disease

Traveling with a child who has celiac disease presents certain challenges. The longer the trip, the more challenging it can be to provide a varied diet.

The type of vacation you are planning will affect your approach to the diet. If you are renting a vacation condo or home in another place and plan to do some of your own cooking, you will either need to bring gluten-free staples and mixes from home or make sure they are available at store near your vacation spot.  

Resorts or cruises

If you are going to a resort or on a cruise with a number of restaurants, you should contact the executive chef before attending. Discuss your child's dietary restrictions and ask for suggestions that will meet your dining needs. Try to call at least three to four weeks before the trip. Often the more time a chef has before your arrival, the more elaborate the gluten-free meal can be. If your child has certain favorite foods that can only be made with particular gluten-free ingredients, like pasta, offer to supply these items to the chef. (Don't forget to go over the methods of safe preparation as well as what ingredients are safe).

When you call to make your hotel reservation, request a small refrigerator for your room. They may even give it to you without charge if you explain it is for a medical reason.

Disneyworld is a true paradise for the parents of a child with celiac disease. If you take the time to call the Food Division Offices for the different parks (a different person is the chef in the Magic Kingdom, Epcot and MGM), they will bend over backward to ensure that your child is served a gluten-free meal. It does not require a lot of time to pull this off, and they can deliver the meal to the restaurant of your choice. Now, there is a catch to dining at Disney World. Depending upon the time of year, you could be trying for a specific reservation with the rest of North America. Although it may force more preplanning than you desire, your dining will run more smoothly if you place a few calls from home before you go.

Disney World Food Division Offices:
Magic Kingdom - (407) 824-6993
Epcot - (407) 560-7713
MGM Studios - (407) 560-7830

Ski resorts

If you're planning to go on a vacation at a ski resort, a call to the head chef or manager of the mountain cafeterias is well worth the effort. Determine what foods and safe choices there are for your child. Is the hot chocolate distributed from the machines gluten-free? Several ski resorts also offer gluten-free hot dogs and chili. If your child can eat yogurt, it is often available in the lunch line. With a bag of chips, a piece of fruit and a candy bar available at the cafeteria you do not need to supplement the meal. Of course, you will need to check the brand of yogurts offered, making sure they are gluten-free.

Teens may want to pack crackers and cheese or a sandwich in the pocket of their ski parka to supplement the cafeteria's offerings. Depending on your child's age, you may even be able to tell the ski instructor that your child needs to be able to have a free choice about what they know is safe to eat. You will, of course, have prepped your child on to the safe choices available to them on the mountain. For your child, the freedom and trust you give them to make the right decision about what to eat is a great first step to the ownership and control of their diet.

How Much Gluten-Free Food to Bring?

The amount and variety of food you need to bring with you on a vacation depends on how much your child wants a varied diet. You can bring pre-made gluten-free pasta mixed with gluten free sauce or tossed with butter and cheese with you, or call ahead to the head chef of the restaurant you are planning to eat at and ask if you can bring your own pasta for them to prepare. Most chefs are quite accommodating of special dietary needs. Just remember to call them before the dinner rush or after lunch.

When you are planning to stay in a place without cooking facilities, pack a small cooler for the trip. Take gluten-free ketchup, mayonnaise, margarine, sandwich meat, peanut butter, jelly, salad dressing, pasta sauce or some pre-cooked noodles in a sealed container. Depending on the length of your trip you can bring uncooked gluten-free pasta and your own colander to supply to the hotel chef.

Before you go, bake or purchase fresh gluten-free muffins, bread and crackers for the trip. Also pack gluten-free breakfast cereals in single serving portions. Always pack small zip-lock baggies and small Tupperware containers to transport individual servings to the restaurant. Bring a small container of gluten-free salad dressing and gluten-free crackers. You may even want to bring a few sheets of aluminum foil to offer to the servers to have the bread toasted on or meat cooked on if it is necessary.

Is fast food OK?

When traveling there are times when fast food is the only available option. Fortunately many have gluten-free options. Always ask the manager about which options are safe for your child, noting ingredients and preparation.

Condos and vacation rentals

Does the condo kitchen have a toaster or toaster oven? If it doesn't have a toaster oven you can always toast bread on tin foil under the broiler. Does it have a microwave? Does it have utensils and pots to cook in? It will be much more relaxing (not to mention less expensive) to have at least a kitchenette on longer stays.

General Tips for parties and events

• Easy to make gluten-free mixes are available from many gluten-free vendors. 
• Try to make the birthday cake or cupcakes close to the time you will be serving. Gluten-free baked goods can be very good but they do not age gracefully, and without gluten they harden very quickly.
• Ice cream cakes are a good alternative if you can find a local store that makes a gluten-free version.
• For your child's birthday party, try serving only gluten-free treats, allowing the birthday boy or girl to eat the same cake or cupcakes as his or her guest.
• If the host is having a pinata see if you could gently recommend a few gluten- free candies for it. You can also work out the trade in method at home and/or encourage your child to trade for safe choices at the party. If your child is too young to know what is safe you should be there to monitor. Request that the host does not put any unsafe treats into the "goody" bags at all. 
• Pizza is a party standard, but rarely are commercial pizza's gluten-free. Send your child to the party with a gluten-free pizza slices and a microwavable plate for easy reheating.
• As your child gets older, there will be times where he or she will prefer to eat something at home before going out to a social event. This is a matter of choice and often more closely reflects the child's proximity to adolescence than anything else. As difficult as it is to think of your child going to a social event and not being able to eat while there, ownership of the diet is the most important thing. For support, tell your child that whatever works for them is fine with you, and try to treat it more as an issue of logistics than anything else.

Types of Events

Birthday Celebrations at School

• Send a letter to all the parents in the class to inform them of your child's dietary restrictions and ask them to please let you know if they are binging in treats for the class.
• It is probably a good idea to ask the teacher for a list of all the birthdays in the class so that you can double check with the families in case you have not heard from them.
• Keep a few pre-made frosted cupcakes in hand for any unexpected party. Check to see if you can leave a couple in the nurse's office or the teachers' lounge freezer for surprise celebrations.

Easter

• There are several brands of gluten-free Easter candies and jellybeans available. The secret is to start calling companies a month or so before so that you have time to research safe brands before they are sold out. If your child is attending an Easter egg hunt you can have him or her trade in for gluten-free Easter candy that you bring with you.

Thanksgiving

• A delicious turkey dinner can easily be made gluten free by several simple steps. The most important thing to remember is that you cannot stuff the turkey with gluten containing bread. 
• There are many versions of stuffing, from rice to cornbread, that are savory and delicious. Do not feel you have to give up the traditional bread stuffing. You can either make it using gluten-free bread for everyone or make up two versions.
• Gravy can be prepared with cornstarch and pan drippings rather than wheat flour.

Hanukkah

• The traditional dish of Hanukkah is potato latkes, or potato pancakes served with applesauce. There are many recipes for this Jewish classic but they often contain wheat flour; make sure to substitute gluten-free flour instead. Gluten-free potato latke kits are available in certain grocery stores. Call your local grocer in advance to make sure they carry the kits.

 Formal catered event

• When the family is invited to a formal catered event at a club, hotel, or someone's home contact whoever will be preparing the food several weeks before the event. Discuss what is being served, from appetizers to dessert, and go over what gluten-free options you have. Speaking directly with the chef is the best bet as they are the ones who control the actual preparation and know what they will need to have on hand.

Teenage parties, bar and bat Mitzvahs

• Teenage parties are often full of pizza, and other processed and gluten-heavy foods. One safe option is to have a separate gluten-free meal, supplied by you or the host, for your teenager. If that's not a possibility, or makes your teenager uncomfortable, see that he or she eats something before the party.

Overnight camp for your celiac child

 By Tracey Keegan, mother of a celiac daughter

My daughter's announcement that she wanted to try out a few weeks of overnight camp gave me mixed feelings. On the one hand I was happy that she had enough independence to not feel restricted by the invisible chain celiac disease had placed on her. On the other hand, I wondered if I would be able ensure both an emotionally and physically positive experience for her through the camp staff, the chef and the kitchen facility.

Choosing a camp

Before committing to the camp of our choice I spoke with the program director explaining in depth the dietary restrictions my daughter would bring with her to camp. I was curious to see what type of reaction this news would create. The director informed me that many of the campers had food allergies and the camp was used to working with special diets. I was both relieved and impressed by her attitude of positive cooperation.

Calling the chef

The camp director thought it would be best if I spoke directly with the chef and gave me his home phone number. I called the chef about three months before my daughter's scheduled attendance. Why so far in advance? Because once the camp was in session, the chef would be so busy feeding the other 749 children he wouldn't be as responsive or perhaps even adaptable to my daughter's needs. On top of that, most of chef's food orders would already have been placed much earlier in the season.

Going over the details

I requested an exact copy of the menu that will be served to my daughter during her attendance so that we could determine what was safe, and where I would have to fill in. I also requested that I be allowed to come and read the ingredient list and take the manufacturer's name and address from all the foods he would be cooking so that I could call the manufacturers of all of his basic ingredients to see what might or might not be communicated through phone or e-mail. Give yourself several weeks before camp begins to make these calls, as companies can be very slow with the detailed information you need to determine if a product is safe.

I told the chef about the celiac diet and my fantasy that my child would be able to eat at least part of each meal and maybe even one entire meal a day provided by the camp. I asked about the types of breakfast foods typically offered to the campers, and found out that usually a version of eggs and potatoes were offered every day in addition to the traditional wheat containing breakfast items. Now I talked to the chef about the concerns I had regarding cross contamination. I asked if he used the same griddle to cook the eggs and potatoes as for preparing pancakes and other gluten containing breakfast items. He said it was the same. I suggested that he should prepare the breakfast foods in a particular order (the eggs and potato dished first) in order to make the cooking process easier for him.

I made a menu chart listing which items were safe each day and gave a copy to the chef and my daughter. I supplied pre-cooked or frozen ready-to-bake pasta dishes in individual servings to the chef. I also gave him gluten-free crackers, cookies and frozen cupcakes to put on my child's tray at meal times. Other celiac campers have supplied their camps with a toaster oven so that either the chef or the camper could use it to toast bread or waffles.

Special outings

Some camps pack bag lunches for the campers if they are going on day trips from camp. I went over the basic items and re-discovered that the camp usually included a granola bar, so I purchased some pre-made gluten-free granola bars and gave them to the chef to include in the bag lunch.

Field trips, which include snack bars or stores, are sometimes done spontaneously, so you might want to send a few gluten-free treats or snacks for your child to take with them on those trips. In my child's situation, a weekly trip to a local ice cream stand was part of the program. As the store was near the camp, a short visit to research a safe choice for her really paid off.

Any child loves to receive a box filled with treats from home and this provides a wonderful opportunity to send safe and sharable gluten-free snacks and treats if allowed by the camp.

Camp stores

The foods offered through the dining hall turned out to be only part of the picture. The camp my child attended also had a camp store, which sold candy and ice creams among other items. The campers had a special "outing" to the store at least once a week when they were given coupons towards a purchase. A quick visit to see what brands of candy and frozen treats were being offered paid off.

Snacks

I spoke with the head counselor of the program and asked if food was offered to the children at any time during their day other than mealtime. It turned out they were offered a snack of graham crackers and a can of fruit juice every afternoon. I sent my child with a box of crackers for her daily snack to give to her counselor upon arrival.

Not surprising, there were evening campfires at which marshmallows were toasted and s'mores made on occasion. I packed a box with some gluten-free graham crackers and gluten-free marshmallows.

When all was said, there were always eggs and potatoes at breakfast. Lunch offered cold cuts, chips, and sometimes even French fries (the chef agreed to dedicate a fryer for only fries to avoid cross contamination). Dinner was more difficult, but two out of the five meals were safe each week.

The camp experience turned out to be very liberating for both my daughter and me. She learned she can safely experience life 'on her own.' It was a small first step towards the ultimate independence all of our children mature to.

Tips for a successful overnight camp experience

Tip #1:Make sure the camp administrator and the chef have a cooperative attitude.

Tip #2:Make contact with the chef early. Get a list of all food products used in the preparation of the meals and contact manufacturers to determine if they are gluten-free.

Tip #3: Distribute food so that it is readily available to the camper in the area they will be consuming it. For example, if the dining hall is a half-mile from the snack area, your camper probably won't have time to fetch a snack before the period is over.

Tip #4: Keep the lines of communication open with the chef. Several times during my child's stay the chef contacted me at home to go over the changes in the menu.

Camps for Celiac children

There are a number of camps available to children with celiac disease.We encourage you to search for camps in your area to learn more.