Type 1 Diabetes Testing: When, Why, And How

type 1 diabetes test
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Type 1 diabetes is a chronic autoimmune condition in which the pancreas produces little to no insulin. “Both adult and childhood-onset type 1 diabetes are due to autoimmune destruction of cells in the pancreas, known as beta cells, that produce insulin,” says Rita R. Kalyani, MD, MHS, an associate professor of medicine at Johns Hopkins University School of Medicine. “As a result, the body can no longer produce insulin on its own.” And without insulin, glucose builds up in the bloodstream and can’t enter cells to produce energy, leading to high blood-glucose levels and a range of symptoms.

This process can unfold for months or years before symptoms appear. Some individuals—but not all who have the condition—may have a genetic predisposition to type 1 diabetes. Today, prescreening tests, which are more widely available than ever before, are a useful tool for those who might have this genetic risk.

But who should get prescreened, and how does the testing work? We spoke with two endocrinologists to learn about the pre-diagnosis process and explain what happens after a type 1 diabetes diagnosis.

What Tests Can Screen For Type 1 Diabetes?

There are two main prescreening approaches: genetic testing and auto-antibody testing. Joel Zonszein, MD, director of the Diabetes Center at the University Hospital of the Albert Einstein College of Medicine, explains that individuals with type 1 diabetes are born with certain genes that can be used as markers—even if they have no known family history of the condition. Type 1 diabetes tests look for these markers to determine if someone is predisposed to developing the condition.

Auto-antibody tests, meanwhile, have been shown to be highly effective in prescreening young children. Auto-antibodies are proteins that the body produces to attack its own tissues, either randomly or due to a foreign substance in the body; in type 1 diabetes, they attack cells in the pancreas that make insulin. There are four different types of antibodies that mark the autoimmune response in type 1 diabetes. Screening for any of these four can help catch the nascent beginnings of type 1.

But as Dr. Zonszein notes, these tests are tools rather than final answers: “They can identify people who are at high risk of developing the disease, but they are not predictive. Additionally, these prescreening tests can sometimes produce false-positive results. They are not perfect.”

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Who Should Get Prescreened For Type 1 Diabetes?

Type 1 diabetes is caused by an autoimmune reaction. Having a parent or sibling with the disease may increase your risk, and would be one reason to consider prescreening testing, says Dr. Zonszein: “The risk for people in the general population with no family history is about 1 in 300. For those who have a family member with type 1 diabetes, the risk is 1 in 20—15 times greater.”

Aside from that, he advises prescreening for children who have a family history of autoimmune diseases like celiac, Graves’, or Hashimoto’s, as well as children who have been diagnosed with certain viral infections, such as enteroviruses (which, researchers are learning, may trigger the autoimmune response). Either way, because type 1 primarily develops in childhood or young adulthood, prescreening tests are most valuable during this age range.

What Tests Will My Doctor Perform To Find Out If I Have Type 1 Diabetes?

Random plasma glucose (RPG) and A1C tests—which use a blood sample via a lancet finger prick and a blood draw, respectively—are used to diagnose diabetes, but neither can differentiate between type 1 and type 2. And since treatment options vary significantly between the two conditions, it’s important to have the right diagnosis. To diagnose type 1 diabetes, your doctor will draw blood to test for any of the four specific auto-antibodies that indicate the type 1 autoimmune reaction.

What Should I Do If I’m Diagnosed With Type 1 Diabetes?

While treatment options have advanced in the past few decades, there is no definitive cure for type 1 diabetes. Living with the condition—and preventing complications down the line—involve careful management of blood glucose levels via insulin therapy.

And according to Dr. Zonszein, education is just as important as medication. “Learn about type 1 diabetes,” he says. “Along with a healthy diet and treating blood sugars by pump or injection, the more they know about T1D, the better equipped the patient and family will be able to manage it.”

He emphasizes the importance of learning to cope with the emotional and social aspects of living with type 1 diabetes. “It is normal to feel overwhelmed, scared, and angry after being diagnosed. Often talking to someone, or joining a support group, can be very helpful.”

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