Almost all people who have celiac disease carry a gene for the disease that can be passed on to their children. If you, your partner or your child’s sibling has celiac disease, genetic testing can help figure out if your child can possibly develop celiac disease in the future. This handout can help you learn more about genetic testing for celiac disease and whether your child should have testing for the disease.

Can Celiac Disease Be Passed On to My Children?

One hundred outlines of people. 97 are grayed out, and three are highlighted in blue.
Only 3 out of every 100 people who carry a gene for celiac disease will go on to develop the disease.

Yes, celiac disease can be passed on to your children if you or your partner carry a gene for the disease. But carrying a gene does not mean your child will definitely have celiac disease. It means your child is at risk of developing celiac disease.

What Are the Genes for Celiac Disease?

There are two genes for celiac disease. These genes are called human leukocyte antigen (HLA) DQ2 and DQ8. Many people who have celiac disease have at least one of these genes. In very rare cases, a person will not have these genes but might develop celiac disease anyway.

How Do Doctors Do Genetic Testing?

Doctors will test your child for the genes through a blood test.

How Can Genetic Testing for Celiac Disease Help My Child?

Genetic testing can help your child by figuring out if they:

  • Are at risk of developing celiac disease at any point in their lifetime
  • Carry the genes for celiac disease, which could be passed to their children in the future

What Do the Test Results Mean?

  • If the test results are positive for HLA DQ2 or DQ8, your child is at risk of developing celiac disease. It doesn’t mean they will definitely have celiac disease and the chance of developing celiac disease is still low. But your child should have regular blood tests to see if they have blood markers (signs in the blood) for celiac disease.
  • If the test results are negative for HLA DQ2 or DQ8, your child does not carry the genes for celiac disease. They cannot develop celiac disease or pass it on to their children. Sometimes, the test results can be hard for doctors to read. You should talk with a doctor who understands the genetics of celiac disease, and knows a lot about celiac disease. The doctor can go over the results if you choose to have your child genetically tested for celiac disease.

Is Genetic Testing Covered by My Insurance?

In many cases, no, genetic testing for celiac disease is not covered by insurance. The testing can be expensive. If you want your child to have genetic testing for celiac disease, you should call your insurance company to ask about the cost and coverage of the test.

The insurance company might ask for the Current Procedural Terminology (CPT) codes or International Code for Diseases (ICD). The current CPT codes are 81376 and 81382. The ICD is K90.0.

 

Rev: 03/2021
This webpage is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used as treatment of any medical conditions.