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The informative pediatric home
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Texas Department of Health
Contact the Texas Department of Health, Newborn Screening Program at 1-800-422-2956 or Email for more information. In this handbook, "OK foods" have a and the "not OK foods" have a
What is Galactosemia?
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such as whey, casein, and curds must also be eliminated. Also some foods
known as "organ meats" such as brain, liver, thymus and pancreas (sometimes
called sweetbreads) should not be eaten because they contain stored galactose.
Yes, it does sound simple; just avoid all milk and anything made with milk or milk products. Well, it's not that easy to follow. In fact it will take a big effort to make sure what your baby eats does not have galactose or lactose in it. It will take discipline on your part. It will mean that you have to change some of your habits when shopping at the grocery store. You will also have to change the way you cook your child's food. Ingredients are always changing and the treatment for galactosemia is unclear. It is best that you follow the advice of your baby's doctor and nutritionist.
Do not feel guilty that you are denying things to your child. The special diet is for the health of your child. Other than giving your child with galactosemia a special diet, it is important that you treat him or her the same as you would any other child. Do not try to "make-up" for the special diet by giving special favors or putting up with behavior that is not acceptable. Setting limits and discipline are very important to teach your child with galactosemia. As your child grows older you will have less control over the diet than you had during infancy. At some point the child will grow into an adult and become completely responsible for his or her own diet. He will need the knowledge and discipline to maintain the diet on his own.
Never give "just a taste" of a "Not OK" food. If they never taste it they
will never miss it.
It is important that you help your child learn to eat safely, since he will live with Galactosemia all of his life. Teach OK and Not OK foods early while you teach colors, shapes, and other safety ideas like stop signs, looking both ways when you cross the street and holding a grown up's hand when walking in a parking lot. By the time your child starts kindergarten he should be able to tell people he has Galactosemia and milk and foods made with milk are not good for him.
Children love to help fix food for snacks, and can help plan meals when they get older. Ask your nutritionist to help you with activities for your child, so that by the 6th grade, your child can make safe independent decisions about what he eats each day.
Make dealing with galactosemia a natural part of life.
By reading labels. It is very important that you read the labels to see what ingredients are in foods. Make sure you read the label every time because ingredients are always changing. Many foods contain milk or some form of milk product either naturally or added during processing. If a food label has one of the following key words, it contains galactose or lactose and must be avoided:
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Some examples of foods that contain galactose or lactose are:
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The Following Food Ingredients are galactose free and are safe to use:
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Kosher foods are foods eaten by people who follow the Jewish dietary laws. The word "Parve" or "Pareve" will be on the label to indicate the food was manufactured free of animal and dairy products. Orthodox Jews may not have meat and milk products at the same meal. Parve products may be served at a Kosher dairy meal or a Kosher meat meal. However, no Parve product is allowed to have lactose or caseinates. You still must read the label to make sure it is free of caseinates and other galactose or lactose ingredients.
You also need to know that certain foods do not require a listing of ingredients, like candy for example. Also, food companies might use one term to describe ingredients such as "dough conditioner" and will not list the complete ingredients. Things like caramel coloring may or may not have galactose in them depending on how it was made. It is up to you to ensure that what you feed your child with galactosemia is free of galactose or lactose. If you have any question in your mind or are unsure of the actual ingredients, you should contact the manufacturer and ask if the food contains any galactose or lactose. Most food companies will answer your questions if you let them know why you are asking. The food company's address or website can usually be found somewhere on the label.
READ THE LABEL EVERY TIME, even if it is a product you have used before and know is galactose and lactose-free. Ingredients change even if the appearance of the label looks the same.
Another great place to get some advice on what is "OK" or "Not OK" for your
child with galactosemia is the Internet. There are several organizations out
there that can be helpful. Using an internet search engine such as
www.altavista.com,
www.hotbot.com or
www.exite.com, just type in the key word "galactosemia"
and you will be on your way. If information on the Internet contradicts
information you have received from your child's physician and/or nutritionist,
do not change treatment without discussing it with the physician.
To insure your baby will get the nutrients needed to grow, you will need to use some type of milk substitute. Soybean protein isolate formulas are suggested. They look the same as regular milk but smell and taste differently. Most babies will drink the formulas, especially if it is given to them at a very early age. New brands of formulas are always coming out; right now the formulas being used are:
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If for some reason your baby cannot drink the soy-based formulas, there are casein-hydrolysate formulas that have only a very tiny amount of galactose. They are:
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While on the casein-hydrolysate formulas, the child must be checked every now and then to make sure that the galactose is not building up in the blood.
Do not use the following baby formulas; they are not good for babies with galactosemia:
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Always check with the nutritionist at the metabolic center before making any changes in your baby's diet.
Soy formulas cost about the same as regular formulas. They are available in three forms:
Be sure to follow the directions on the label when
mixing the formula.
Serve the soybean protein isolate formulas in a training cup. Since the soybean protein isolate formulas are a good substitute for milk, it can be used to replace milk for the rest of your child's life. If the child is not drinking enough of the formula to meet their nutrition needs, then it might be necessary to give them Vitamin D and calcium tablets. Calcium and Vitamin D help your baby's bones and teeth grow strong and healthy. Ask the child's nutritionist or doctor what the right amount of formula is for your child.
An adult with galactosemia can continue to drink the soybean protein isolate formulas. There are also some beverages made for adults that have milk intolerance that are OK to drink. They may be found in the health food or dairy section. As always, read the label to make sure it is OK to use. These adult milk substitutes should not be used for children or infants because they don't have the full amount of vitamins and calcium. Regular milk that has added lactase to help people with milk intolerance digest it, should not be a part of the galactosemic diet even as an adult. Avoid milk substitutes that are made with whole soybeans, organic soybeans, soymilk, soy flour, and soy protein (unless soy protein isolate is specified). Brand names are always changing but here are some examples of what to avoid:
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Milk substitutes that are made with isolated soy protein and some that are made from rice are acceptable. Some of the brand names are:
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Again, read the label to be sure they are OK to use and check with your
nutritionist if you have any doubt.
Some bread foods have milk added in some form. Read the labels carefully to make sure they don't. If you are not sure, you can write the manufacturer or bakery that makes the food and ask for the ingredients. They are usually happy to tell you if you explain why you are asking.
Pastas and Rice are usually OK to use. Things like:
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Most cooked and dry cereals are lactose free but if they have lactose it is usually in the form of whey. Again, ingredients are always changing so reading labels every time is important.
Plain saltines and graham crackers usually don't have galactose, but check
the labels just in case.
Plain meats are great sources of protein. Meats like:
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Meats that must be avoided are:
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Fats that are OK:
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Fats that are not OK:
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Fruits and vegetables contain very complex components that contain some galactose. Some of these components will release a small amount of galactose during digestion. Experts do not agree on whether or not these small amounts are a problem for someone with galactosemia. Ask your nutritionist; she will help you decide on what is best for your child.
The following fruits and vegetables are still questionable:
| Fruits Apple Banana Dates Figs Grapes Kiwi Pears Watermelon |
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Vegetables Broccoli Brussel Sprouts Carrots Onions Squash Tomatoes Sweet potatoes |
| Legumes (bean foods) Peas Lima beans String beans Dried peas Pinto & kidney beans |
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Many of the commercially canned soups, sauces, and gravies contain margarine.
Read the label to ensure they are galactose or lactose free. If you prepare
sauces and gravies at home, use water instead of milk.
There is no need to cut out sweets from the galactosemic diet. Store bought sweets that are milk-free or homemade sweets using the OK ingredients are allowed.
Some good desserts or snacks are:
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Sweets made with milk products that should be avoided are:
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A lot of medicines have lactose added. Usually this is done to make the medicine taste better so kids will take it. They are called inactive ingredients. Sometimes these inactive ingredients are used as the "glue" that holds the pill in shape. Whatever the reason for using them, inactive ingredients are not always listed on labels. Check with your doctor or the pharmacist; they will look up all the ingredients in the medicine in a book called the "Physicians' Desk Reference." "PDR" for short. Most physicians and pharmacists have two PDR's, one copy for prescription medicine and another copy for non-prescription over-the-counter medicine.
Always ask the doctor if the medicine they are prescribing your child is free of galactose and lactose. If it isn't, then a similar medicine made by another manufacturer should be prescribed.
When buying over-the-counter medicines at the drug store, be sure to ask the pharmacist to check the PDR and see if the medicine has galactose or lactose. Be sure to tell the pharmacist why you are asking; they should be more than happy to help you. If the medicine does contain galactose or lactose, then ask the pharmacist to help you find another drug that can be used.
If for some reason your child must receive medicine by I.V. (intravenous), tell the medical personnel that your child has galactosemia and that medicines with galactose or lactose should not be used.
Eating out is not easy for anyone on a special diet. But, it can be done. It will take some effort and planning. Many restaurants will prepare special items. Ask for plain vegetables or rice instead of those cooked in butter or smothered in cream sauce. Ask if the burgers are made from pure ground beef. Take your own special galactose or lactose-free buns. Many fast food places have salads or salad bars so why not take your own special dressing? How about the potato bar (make sure to skip the sour cream, cheese and butter of course). A potato topped with real bacon bits and spices would be allowed. Take along the soy protein isolate formulas in ready-to-drink cans or a measured out amount of powder to be mixed with a glass of water at the restaurant.
Some foods to avoid:
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It will take some time to get used to always asking for special items or
questioning the ingredients, but in time it will become second nature to you.
You might want to think about becoming a "regular" at certain restaurants; you
will become familiar with the menu, and the staff will get to know you too and
can help you make sure the food for your child is galactose and lactose free.
Remember to always ask about ingredients or how the food was prepared even if
you do become a "regular."
Going to the grocery store is going to take more time than it did before, especially the first few times that you go. If you can make a few plans before going it might make it easier. Try these following tips:
At first it won't be too difficult to control your child's diet. The diet is pretty simple for infants: the special formula and some galactose-free and lactose-free baby foods. When your child is an infant is a good time to start planning the diet and reading labels. It is also a good time to start practicing the "OK" ways to cook food for your child once they start weaning off the bottle. It is also important to start telling friends and family members about the baby's special diet. If the baby is in daycare or with a babysitter, it is very important to talk with the caretaker and explain galactosemia and the special diet.
When your child reaches toddler age and is in preschool, hopefully he will know to drink his special milk. The sooner your child accepts the diet as being "normal" the better off he will be. Educate the staff at the preschool about the special diet of the child so they can help too. You may need to supply special snacks for your child or arrange special meals. It is important to include your child in planning the diet. The older your child becomes the less you should do and the more responsible he should become for his diet.
Each year you should speak with your child's teacher and lunch room
supervisor before the school year starts. If school lunches are not satisfactory
then lunch at home or packing a lunch is necessary.
Remember, you are not alone. There are other families out there that have children with galactosemia. Many of those families belong to groups and help each other by being pen pals, sharing recipes, and keeping up on the latest information about galactosemia. Contact the Texas Department of Health Newborn Screening Program at 1-800-422-2956 for more information.
Parents of Galactosemic Children, Inc. (Fall 1998 Newsletter vol.10, Issue 1. PGCI 1741-I 2148 Bryton Dr., Powell, OH 43065
Parents of Galactosemic Children, Inc. "Food" On-line: www.galactosemia.org
Roberts, R. & Meyer, B. (1993) Living with galactosemia a handbook for families (3rd ed.), Indianapolis: Department of Pediatrics Indiana University School of Medicine, 702 Barnhill Dr., Indianapolis, Indiana 46202-5225
Tyler for Life Foundation. "Galactosemia" On-line:
http://www.tylerforlife.com/galactosemia.htm 6340 Holborne Lane,
Douglasville, GA 30134-4023
Last Updated: December, 1999
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