When I was 9 years old, I had a double ear infection and strep throat, followed by some strange symptoms, including wetting the bed, feeling thirsty all the time, and losing weight to the point where I told my mom I needed a new belt. Once my mom put two and two together, she realized that this didn’t seem right and took me in to see my pediatrician, who also happened to be a pediatric endocrinologist.
It was soon discovered that I had type 1 diabetes. At the time, all I knew about type 1 diabetes was that Stacy from the babysitters club had it, and she had to give herself shots and avoid sugar. I remember feeling sad, frightened, alone, and incredibly unsure of what the future would look like with this new diagnosis.
I was lucky enough to have a ton of support from my parents, grandparents, friends, and the amazing school nurse at my elementary school. Within a couple of weeks, I learned how to give myself injections, check my blood sugar, treat low blood sugars, and count carbs. I even went to diabetes sleepaway camp where having diabetes felt “normal” and I made a ton of friends that also had type 1 diabetes.
Had all of this occurred today, it would have been possible to have gotten screened for antibodies to have a heads up that this diagnosis might be coming which could have helped lessen the overwhelm, given my family ample time to learn about the disease, and possibly even delay the onset with the treatments newly available on the market.
This article will dive into type 1 diabetes antibody tests, explain what these tests are looking at, and discuss the pros and cons so you can decide if screening is right for your family.
What are Type 1 Diabetes Autoantibodies?
Type 1 diabetes is an autoimmune disease, meaning the body’s immune system mistakenly attacks its own cells. In this case, the immune system targets the beta cells in the pancreas, which are responsible for producing insulin. Insulin is a hormone that helps your body use sugar for energy. When the beta cells are destroyed, the body can no longer produce insulin, leading to high blood sugar levels.
Autoantibodies are proteins produced by the immune system that attack the body’s own tissues. These autoantibodies can be present in the blood for months or even years before symptoms of type 1 diabetes develop.
There are several different types of type 1 diabetes autoantibodies, including:
- Glutamic acid decarboxylase (GAD) autoantibodies: GAD is an enzyme found in the beta cells. GAD autoantibodies are the most common type of autoantibody found in people with type 1 diabetes.
- Insulinoma-associated-2 (IA-2) autoantibodies: IA-2 is a protein found in the beta cells. IA-2 autoantibodies are less common than GAD autoantibodies, but they are still a strong indicator of type 1 diabetes.
- Insulin autoantibodies: Insulin autoantibodies are directed against insulin itself. They are less common than GAD or IA-2 autoantibodies, but they can be present in people with type 1 diabetes who have not yet been diagnosed.
- Zinc transporter 8 (ZnT8) autoantibodies: ZnT8 is a protein involved in the storage and release of insulin from the beta cells. ZnT8 autoantibodies are a newer type of autoantibody that can be present in people with type 1 diabetes.
The presence of autoantibodies indicates an increased risk of developing type 1 diabetes, but it is not a guaranteed diagnosis. Some people with autoantibodies never develop type 1 diabetes. However, the more autoantibodies a person has, the higher their risk of developing type 1 diabetes.
Why Consider Type 1 Diabetes Antibody Testing for Your Family?
Type 1 diabetes can develop at any age, including in young children and even adults. While there’s no way to prevent it, knowing your child’s risk can be incredibly valuable. That’s where autoantibody testing comes in. Let’s explore the potential benefits:
Early Detection
One of the biggest advantages of autoantibody testing is the possibility of early detection. These tests can identify the presence of autoantibodies before any symptoms appear. This early warning can be a game-changer, offering several key benefits:
- Closer Monitoring and Management: If your child or relative tests positive for one or more autoantibodies, their doctor can closely monitor their blood sugar levels. This allows for proactive intervention and management, potentially slowing the progression of the disease and even preventing the risk of Diabetic Ketoacidosis (DKA).
- Potential for Delaying Symptom Onset: In some cases, early interventions and careful management may help delay the onset of full-blown type 1 diabetes symptoms. This can mean more time without the challenges of managing the disease. Tzield is a medication that was approved by the FDA on November 17, 2022. It is the first and only immunomodulator approved to delay the onset of Stage 3 type 1 diabetes for adults and pediatric patients 8 years and older.
- Opportunity to Participate in Clinical Studies: Early detection opens the door for participation in research studies aimed at preventing or delaying the progression of T1D. This not only benefits your family, but also contributes to advancing understanding and treatment of the disease.
Knowledge is Power
Whether the results are positive or negative, autoantibody testing can provide families with valuable information.
- Peace of Mind: A negative result can offer reassurance, especially if there’s a family history of type 1 diabetes. Keep in mind, test results can change overtime so re-screening is recommended. The cadence for re-screening is dependent on several factors including family history so it is best to talk to your doctor about your individual situation.
- Preparedness: A positive result, while concerning and possibly anxiety-provoking, allows families to prepare emotionally and practically. You can learn about diabetes management, connect with support groups, and make informed decisions about care. Knowing what you’re facing allows you to be proactive rather than reactive.
Family History = Increased Risk
If there’s a family history of type 1 diabetes, your child’s risk increases. This makes autoantibody testing particularly important. While a family history doesn’t guarantee your child will develop diabetes, it does make them slightly more susceptible. Testing can provide valuable insights and empower you to take appropriate steps.
It’s important to remember that a positive autoantibody test doesn’t necessarily mean your child or family member will develop type 1 diabetes. However, it does indicate an increased risk.
Why Not Consider Antibody Testing for Your Family?
While autoantibody testing for type 1 diabetes offers many potential benefits, it’s important to consider and understand the potential drawbacks as well.
Some people may choose not to screen their family members due to the anxiety and emotional burden involved. There is also a risk of a false positive or a false negative.
A positive autoantibody test indicates an increased risk, but it doesn’t mean your child will definitely develop the disease. Knowing your child is at risk can be emotionally challenging for the entire family, especially because there is no cure for type 1 diabetes at this time.
It’s important to weigh these potential drawbacks against the potential benefits of autoantibody testing. Discussing your concerns and family history with your child’s care team can help you make an informed decision that’s right for your family.
My Personal Experience with the Type 1 Diabetes Antibody Test
I debated for quite some time whether I wanted to test my own children for the very reasons mentioned above. What would I do if one of them or both of them tested positive? Would I have wished I had never tested them? I ultimately decided that the benefits of screening them outweighed any reasons not to screen, especially once Tzield had come on the market.
I opted to screen my children, who were 4 and 6 years old at the time, through TrialNet. TrialNet gave the option to do a finger stick at home that included a kit to mail back a small vial of blood, or offered an order for a blood test at a lab. We opted to do the finger stick at home. After struggling a bit with getting the blood in the test tube, we figured it out and after just a few tears, packed up our kits and had them overnighted via Fedex.
About 6 weeks later I got a letter in the mail that both of my children tested negative for all of the antibodies which was a huge relief. While not everyone is as lucky, I am certain that even if either of my kids tested positive, I would be thankful to have the knowledge so that I could figure out next steps.
At the time this article was written, I was notified by TrialNet that we are eligible to rescreen both kids. Just this week, I sent the blood samples in. I am now anxiously awaiting the results, and it will be heavy on my mind until they arrive.
Conclusion
If you read this article and have now decided that you would like to screen your children or other family members, congratulations! Whether they test positive or negative for antibodies, you are taking a big step towards helping them in the future.
The next step is to talk to your children’s doctor about antibody testing. Your doctor can order a test at a commercial lab or national and regional research studies such as TrialNet, ASK, CASCADE, or PLEDGE may be an option for you.
If you are looking for more information about type 1 diabetes antibody tests, check out the following links:
- https://www.screenfortype1.com/
- https://www.trialnet.org/our-research/risk-screening
- https://www.hopkinsguides.com/hopkins/view/Johns_Hopkins_Diabetes_Guide/547013/all/Autoantibodies_in_Type_1_Diabetes
- https://www.breakthrought1d.org/early-detection/
- https://diabetessisters.org/type-1-diabetes-screening/
If you’d like to discuss if screening is right for you, feel free to reach out. I’d be happy to talk it through with you. Before you go, don’t miss this chance to join my free newsletter to stay up to date on all of the latest updates, news, and articles from Mama-Betes!