Screening for Type 1 Diabetes

Key points

  • Type 1 diabetes develops in stages and may start a long time before a person needs insulin.
  • People at high risk for type 1 diabetes can benefit from screening before symptoms appear.
  • Knowing they’re in the early stages of type 1 diabetes can help people notice symptoms and avoid serious complications.
Smiling young boy getting an injection

Who should be offered screening?

People with a family member who has type 1 diabetes are 15 times more likely to develop type 1 than the general population and should be offered screening. It’s important to note, though, that most people who develop type 1 don’t have a family member with the condition.

Screening can begin at 2 years old.

Why get screened?

Type 1 diabetes is often an emergency diagnosis. A person likely doesn't know they have type 1 diabetes until a serious complication happens, such as  diabetic ketoacidosis  (DKA). DKA is a medical emergency and can be life-threatening if untreated. In the United States, 30% to 40% of children have DKA when they are first diagnosed with type 1 diabetes. And DKA can happen at any age; many adults, not just children, are diagnosed with type 1 diabetes.

Though symptoms can appear suddenly, type 1 diabetes develops in stages over months or years and starts long before a person needs to take insulin. Early stages of type 1 diabetes can be identified by screening and treated years before symptoms and serious complications like DKA appear.

Children who develop type 1 diabetes before age 10 are at increased risk for heart disease and kidney disease as young adults. That's why screening of people at risk, early treatment, and continuous monitoring are so important—these steps can delay lifelong complications.

Did you know?

Age plays a major role in progression of type 1 diabetes. The younger the person, the faster type 1 will progress.

How screening works

Type 1 diabetes develops when your immune system mistakenly attacks cells in the pancreas that make insulin. When this happens, your body creates certain diabetes-related autoantibodies. Your doctor can check for these autoantibodies with a simple blood test.

Screening results

No autoantibodies (negative)

Right now, there is no guidance on when or how often screening should be repeated after a negative result. Talk to your doctor about whether you or your child should be monitored going forward.

One autoantibody (at risk)

If diabetes-related autoantibodies are detected, screening will be repeated to confirm the result. One confirmed autoantibody is a sign you’re at risk for developing type 1 diabetes. Your or your child’s doctor may develop a plan to monitor blood sugar and autoantibodies going forward.

Two or more autoantibodies (early-stage type 1 diabetes)

If your or your child’s results show two or more diabetes-related autoantibodies, screening will be repeated to confirm the result. Two or more confirmed diabetes-related autoantibodies means you or your child has an early stage of type 1 diabetes. Your doctor will also check blood sugar levels and ask about any symptoms to find out your stage of type 1 diabetes.

Stages

Type 1 diabetes develops in three specific stages. Stage 1 is now considered the start of type 1 diabetes. People can stay at stage 1 for years before progressing to stages 2 and 3.

Stages of Type 1 Diabetes
Stage Autoantibodies Blood sugar Symptoms
1 2 or more Normal No symptoms
2 2 or more Abnormal No symptoms
3 2 or more High Symptoms are present

If you or your child has type 1 diabetes at any stage, your doctor will refer you to an endocrinologist (a doctor who treats diabetes and other hormone problems). They will work with you to create a treatment plan and discuss medicines, monitoring, and lifestyle changes needed to manage type 1 diabetes. People with stage 2 type 1 diabetes may be eligible for a medicine that can delay the progression of type 1.

Cost of screening

There are free type 1 diabetes screening programs available. For example, TrialNet provides free screening to people who have a relative with type 1 diabetes. For those who test positive, TrialNet offers monitoring and a chance to take part in research.

Similarly, the ASK (Autoimmunity Screening for Kids) program offers free screening for type 1 diabetes and celiac disease for kids in the United States, including those without a family history of either condition. Screening can be done in person, or a screening kit can be mailed to you.

You can also ask your or your child’s doctor to order testing at a local lab. If you have health insurance, call your insurance provider to see if the cost of screening is covered. Not all insurance providers will pay for it. If screening isn’t covered, the out-of-pocket cost is typically around $100.

Looking ahead

Research in type 1 diabetes prevention and treatment is ongoing. New technologies and medicines are being developed, and researchers are making important breakthroughs. Right now, people of all ages with type 1 diabetes are leading full, healthy lives.