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What is galactosemia?

Galactosemia is a rare genetic disorder affecting about 1/60,000 people. People with galactosemia are missing the enzyme that allows the body to break down a food sugar called galactose (found in milk and other dairy products). Those with an early diagnosis who also strictly avoid milk products can live a relatively normal life. However, mild intellectual impairment may develop, even in people who avoid galactose. Galactosemia can cause liver/kidney/ brain damage, cataracts/blindness, infertility, mental retardation, severe learning disabilities, speech issues, tremors, tics, and other problems. Galactosemia will never be “outgrown” and there is NO TREATMENT for Galactosemia. Restricting the diet helps with some problems, but does not seem to positively affect several central nervous system issues. Research is needed and extremely underfunded! Galactosemia is considered an orphaned disease, meaning there is no funding, government or otherwise. It is up to parents to raise funds to conduct research and educate others. Visit this short you tube video for more info: http://www.youtube.com/watch?v=9xrn3wvqk1g

Whom does this affect?

Galactosemia affects all races, creeds, cultures and every socioeconomic status. It is passed from 2 parents who carry the “Galactosemic” gene and pass it to their child. Not every child in the family will have Galactosemia. Some may be carriers, some may not have the “Galactosemic” gene at all and some will have Galactosemia. Those who have Galactosemia or who are carriers can pass it to their own children.

What food ingredients are unacceptable for the diet for galactosemia?

 

  • Butter
  • Nonfat Milk
  • Milk
  • Nonfat Dry Milk
  • Buttermilk
  • Cream
  • Milk Chocolate
  • Cheese
  • Buttermilk Solids
  • Nonfat Dry Milk Solids
  • Milk Derivatives
  • Dried Cheese
  • Milk Solids
  • Lactose
  • Casein
  • Sour Cream
  • Dry Milk
  • Whey and Whey Solids
  • Dry Milk Protein
  • Yogurt
  • Organ Meats (liver, heart, kidney brains, sweetbreads, pancreas)
  • Sodium Caseinate
  • Calcium Caseinate
  • Tragacanth Gum
  • Lactostearin
  • Lactalbumin
  • Dough Conditioners*
  • Hydrolyzed Protein**
  • Margarine***
  • MSG (Monosodium Glutamate)****
  • Soy Sauce*****


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 margarine's 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.

 

For more information about galactosemia and the Galactosemia Foundation, please visit: www.galactosemia.org