Medical / Dietary Needs

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.

Dietary

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. 

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.

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  • Fruits
  • Vegetables
  • Legumes
  • 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:

  • Butter
  • Buttermilk
  • Buttermilk Solids
  • Cheese (EXCEPTIONS: Jarlsberg, Gruyere, Emmentaler, Swiss, Tilster, grated 100% Parmesan, Parmesan aged >10 months, and sharp Cheddar cheese)
  • Cream
  • Dough Conditioners*
  • Dry Milk
  • Dry Milk Protein
  • Dry Milk Solids
  • Ghee
  • Hydrolyzed Whey**
  • Ice Cream
  • Lactalbumin
  • Lactose
  • Lactoglobulin
  • Lactostearin
  • Margarine***
  • Milk
  • 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)
  • Sherbet
  • Sour Cream
  • Fermented Soy products and Soy Sauce*****
  • Whey and Whey Solids
  • Yogurt
  • 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.

Medical

An individual with galactosemia may or may not experience any of the following potential complications.

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  • A cataract is a clouding of the lens of the eye. 
  • In this population, cataracts are often mild, transient, and resolve with dietary treatment. They may form in one or both eyes and growth rate varies.
  • In general, it is believed that if a galactose restrictive diet is followed, cataracts should not develop.

  • Speech/language difficulties (60%)
    • Problems range from mild to moderate or severe.
    • Individuals may have delayed vocabulary.
    • A common type of speech difficulty found in individuals with galactosemia is apraxia of speech
      • This is often referred to as dyspraxia.
      • This is a motor speech disorder
  • Difficulties with math or reading in school.

  • Fine and/or motor difficulties may be present.

  • Ataxia balance, gait, and fine motor tremors 

  • Most females will exhibit POI
  • May have delayed menstruation

  • Growth may be severely delayed during childhood and early adolescence when puberty is delayed.
  • Growth continues through late teens.

What you can do

  • Good communication with parents is very important.
    • Let parent know if child has eaten any food not allowed
    • If a special event (party, birthday) is coming up so a galactose-free food can be provided. Or have families send in a treat that can be stored in the classroom for these occasions.
  • Little tastes can add up and shouldn’t happen.  Supervision of younger children with galactosemia may be needed to prevent sharing or “tastes.”
  • If you are unsure, do not give the food.
  • School staff should treat a child with galactosemia as a normal healthy member of the class.
  • Work with cafeteria staff to support the special diet and make it easy for the child to be included.
  • Lactate, Lactic acid, Lactylate do not contain lactose and are acceptable ingredients.

Explaining dietary differences to classmates can be helpful. It is a good idea to involve the family and child in the explanation.

A few ideas to think about:

  • Children understand the idea of a food allergy.
  • Discuss general differences within the class. Emphasize that all people are different.
  • People eat different foods for various reasons (food customs, religious reasons, and regional differences, vegetarian, etc.).
  • People have different diets (diabetes, etc.) to help their bodies.
  • Involve the school nurse.