What you need to know
Galactosemia does not present the same in all children. Many have varying degrees of symptoms, and some do not show difficulties. If a newborn is untreated, he/she may have vomiting, diarrhea, and fail to gain weight.
Be aware, or ask a parent, if the child has a medical alert bracelet.
Galactosemia affects the body’s ability to process some sugars from food. Galactose is a sugar that may be found alone in foods but is usually found as part of another sugar called lactose.
Lactose is sometimes called milk sugar and is made of equal parts of two simple sugars: galactose and glucose (source: A Teachers Guide to Galactosemia, Texas Dept. of Health).
People with galactosemia need to completely avoid foods with galactose and/or lactose (glucose and galactose). This includes all dairy products from animals and foods with dairy products. If galactosemia is left untreated, galactose will accumulate in the blood and body tissues and will cause damage.
Children with galactosemia may need a 504 plan to accommodate dietary needs. A child may need special arrangements for lunch during the school day.
- No milk from any mammal is allowed (human milk, cow, goat, camel, ewe, yak etc.)
- Besides dairy, also can not have anything with lactose or galactose, including dates, papayas, bell peppers, persimmons, tomatoes, and watermelon.
- Unfermented soy-based products
- Mature cheese (Jarlsberg, Gruyere, Emmentaler, Swiss, Tilster, grated 100% Parmesan, Parmesan aged >10 months, and sharp Cheddar cheese)
- Food additives sodium or calcium caseinate
Food labels are our main tool for determining if a food or beverage is acceptable (or not) for the diet for galactosemia. Reading labels is key to eliminating as much galactose as possible.
Food Ingredients which are unacceptable in the diet for Classical Galactosemia:
- Buttermilk Solids
- Cheese (EXCEPTIONS: Jarlsberg, Gruyere, Emmentaler, Swiss, Tilster, grated 100% Parmesan, Parmesan aged >10 months, and sharp Cheddar cheese)
- Dough Conditioners*
- Dry Milk
- Dry Milk Protein
- Dry Milk Solids
- Hydrolyzed Whey**
- Ice Cream
- Milk Chocolate
- Milk Solids
- Milk Derivatives
- MSG (Monosodium Glutamate)****
- Nonfat Milk
- Nonfat Dry Milk
- Nonfat Dry Milk Solids
- Organ Meats (liver, heart, kidney, brains, pancreas)
- Sour Cream
- Fermented Soy products and Soy Sauce*****
- Whey and Whey Solids
- Tragacanth Gum
NOTE: Lactate, Lactic acid and Lactylate do not contain lactose and are acceptable ingredients.
* Dough Conditioners may include caseinates which are UNACCEPTABLE. Most labels specify the name of the conditioner which is added to the product. If not, contact the company to make sure that all are acceptable.
** Hydrolyzed protein is UNACCEPTABLE and is commonly found in canned meats, like tuna. Hydrolyzed vegetable protein, however, is acceptable.
*** A few diet margarines do not contain milk. Check labels before using any brand. If "margarine" is listed as an ingredient in any processed food, consider the product UNACCEPTABLE.
**** MSG or Monosodium Glutamate itself is acceptable; however, some MSG's contain lactose extenders. It is best to avoid MSG whenever possible.
***** Soy sauce is UNACCEPTABLE if it is fermented. Brands must be checked before including this in the Galactosemic diet.
Taken from Galactosemia Foundation / Diet Resources.