While people living with type 1 diabetes (T1D) are still waiting for a cure, research has actually come a very long way. Here’s what you need to know about detecting T1D long before symptoms develop. 

Type 1 diabetes can start years BEFORE the classic symptoms  

If you live with T1D, you might think it simply started when your symptoms started — but thanks to research, we know it actually started years before you needed insulin.  

Many of us can look back at the timeline and pinpoint exactly when those classic symptoms of DKA (diabetic ketoacidosis) arrived:  

  • frequent need to pee 
  • intense thirst 
  • sudden vision changes 
  • unexplained weight loss 
  • sour-smelling breath 
  • unexplained exhaustion  
  • urinary tract infections 
  • dry stools in infant diapers 
  • bed-wetting and accidents in potty-trained children 

How can you spot T1D before all of these symptoms? By taking a blood test that can detect the earliest stages of the disease. 

The stages of type 1 diabetes 

The stages of T1D are related to the number of autoantibodies present combined with blood glucose levels. Autoantibodies develop when your immune system starts attacking your own body.  

Thanks to research from TrialNet and others, we can test for those T1D-related autoantibodies through a simple blood test. 

  • Genetic risk: Even without any family history of T1D, certain genes increase a person’s risk of developing T1D. Approximately 85 to 90 percent of people diagnosed with T1D have no family history of the disease. 
  • Autoimmune activation: When the immune system begins attacking insulin-producing cells.  

Here are the stages of T1D 

  • Stage 1: When two or more autoantibodies are present but blood sugars are normal.  
  • Stage 2: When two or more autoantibodies are present, and blood sugars are abnormal, but there are no other symptoms.  
  • Stage 3: When symptoms develop, blood sugar levels are persistently high, and insulin therapy is immediately necessary. (Some people may still test positive for autoantibodies at diagnosis, but many do not.)

These stages can take months or years to develop.  

Why does catching it early even matter? 

Here’s one big reason why spotting the earliest stages of T1D is so important.  

  • Preventing DKA protects you/your child’s brain health. Every year, children still die from undiagnosed DKA. Even when an accurate diagnosis is made in time, you/your child still spend weeks or months in DKA, which research has shown permanently injures the brain. Detecting T1D early means preventing DKA. 

Screening for the earliest stages of T1D can be life-changing for you or your child. 

If the test results are positive…then what? 

If you/your child’s T1D screening comes back positive for autoantibodies, you can take action. 

  • Follow up with your healthcare provider for additional testing to confirm your results.
  • Talk with your healthcare provider about your options and make a plan for further monitoring.
  • Take advantage of resources from TrialNet and Ask the Experts.

How can you/your child get screened for T1D autoantibodies? 

It’s a simple blood test, and there are a few ways you can go about it: 

TrialNet: This is an ongoing study that offers free intravenous screenings.  

  • Cost: Free 
  • Eligibility: If you are between the ages of 2.5 and 45 years and have a parent, brother/sister/child with T1D OR between the ages of 2.5 and 20 years and have an aunt/uncle/cousin/grandparent/niece/nephew/half-sibling with T1D. 
  • Process: You’ll sign up to request a test kit. The test kit is mailed to your house. Next, you’ll make an appointment with a Quest or LabCorp blood draw facility in your area (they often work within local urgent care centers). Just attend your appointment; they manage the rest — including safely shipping your blood draw to the TrialNet labs!  
  • Results: TrialNet will email your results to you. If you test positive, you’ll receive further support on intervention opportunities! 

Doctor’s office: You can ask your primary care physician or your child’s pediatrician to send in orders at your local blood lab for T1D autoantibody panel. 

  • Cost: Based on your personal insurance coverage 
  • Eligibility: With your doctor/your child’s pediatrician’s support and cooperation, there are no obstacles to having this blood test requested and performed. 
  • Process: This intravenous blood draw would be performed in the lab where your doctor or your child’s pediatrician sends the orders. 
  • Results: If you receive positive results, your doctor or your child’s pediatrician should reach out immediately to TrialNet for further support on potential clinical trials. 

Autoimmunity Screening for Kids (ASK) 

  • Free screenings for type 1 diabetes and celiac disease through the Barbara Davis Center at the University of Colorado.  
  • Cost: Free 
  • Availability: Anyone in the U.S., regardless of family history of either disease. Although ASK is primarily for children under 18, its website offers an adult screening option. 
  • Process: You can order an at-home screening kit or schedule an in-person appointment at locations throughout Colorado. A small amount of blood will be collected and tested for autoantibodies for type 1 diabetes and celiac disease. 
  • Results: You will be contacted with the results of the screening. If the results are positive, ASK will confirm these results and provide free follow-up and monitoring. 

PLEDGE (Population Level Estimate of Type 1 Diabetes Risk Genes in Children) 

  • Sanford Health offers general population screening for type 1 diabetes and celiac autoantibodies through the PLEDGE study. 
  • Cost: Free 
  • Availability: Children who: 
    • Are ages 0-5 or ages 9-16
    • Receive routine care at Sanford Health 
    • Have a My Sanford Chart account 
  • Process: You can enroll in the PLEDGE study through My Sanford Chart. When you visit your Sanford clinic lab for routine clinic appointments (or at any other time convenient for you), a small blood sample will be collected for autoantibody screening.  
  • Results: See your results in your My Sanford Chart. If your child screens positive for T1D or Celiac antibodies, the PLEDGE study team will contact you and your child’s primary care provider to discuss options for monitoring or intervention. 

Screening can feel tedious and overwhelming — but it’s worth it.  

When should you/your child get screened? 

Pronto! Most people have T1D-related autoantibodies present before 5 years old — even if the full onset of the disease doesn’t occur until their teens or twenties. This means the sooner you get your child screened, the better. 

But screening is worth doing at any age. If you’re in your 20s, 30s, 40s, or more, it’s still worth getting tested. T1D can develop at any age. 

Who should get screened?

Anybody and everybody — no matter how old they are. Your adult siblings, your sister’s kids, your cousin’s kids. Your neighbors and their kids. Your child’s best friend and their siblings.

Anybody and everybody can and should get screened for T1D. The number of cases across the globe is increasing rapidly. It can develop at any age, and decades of research have given us the ability to intervene if you catch T1D in the earliest stages.

What causes T1D? 

There’s a big difference between the cause of T1D and the trigger of the full onset that requires immediate insulin therapy. 

Besides a genetic risk, researchers still don’t quite know what causes the first stage of T1D — when the immune system begins attacking your insulin-producing cells. 

But the trigger that drives that attack into overdrive — to the point of needing insulin therapy — is a bit more understood. Any stressful event, illness, etc., can push your T1D from stage 2 to stage 3. 

Again, none of these examples cause T1D. T1D started months or years before noticeable symptoms and the need for insulin. These examples are simply the triggers that push your immune system to the full onset of the disease. 

It’s time to get screened. 

Getting an intravenous blood draw isn’t fun or easy — especially for little ones. But it’s one of the most important things that modern science enables us to do, and it’s worth it. Thanks to early T1D detection, you can take action if you test positive. 

DISCLAIMER: The information on this webpage is not intended to replace medical guidance from your health care provider. T1D Exchange recommends using the above resources with expert guidance from your healthcare provider.  

Positive autoantibody tests should be followed up with additional testing to confirm the results under the guidance of your healthcare provider. 

EDITOR’S NOTE: This content was developed independently by T1D Exchange and was supported by a healthcare contribution from Sanofi.