I Tested My Children AGAIN for Type 1 Diabetes Autoantibodies — Here’s Why

Here’s why: I do not want to miss the opportunity to spot type 1 diabetes (T1D) in the earliest stages before they might need daily insulin therapy. 

Because: 

• There is one FDA-approved drug (Tzield) that aims to delay the immune system’s attack on the cells that produce insulin.
• Many ongoing clinical trials aim to delay the immune system’s attack on the cells that produce insulin.
• In most cases, these therapies are intended for people in stage 2 or newly diagnosed stage 3 type 1 diabetes — when the pancreas is still producing a lot or some insulin! 
• Lucy, my oldest, was just diagnosed with celiac disease this summer. I figured, “If she got my celiac autoimmune disease, then it seems likely she’s doomed to get my T1D, too!”

I get it: no parent wants to deal with this

I know that taking your child to get their blood drawn isn’t fun. But we should all be doing this: screening our children for the autoantibodies of type 1 diabetes.

This is not the same as testing their blood sugar or spotting symptoms of T1D. Autoantibodies can develop years before your child’s blood sugar levels start to rise and years before they need daily insulin therapy.

(Hey, by the way, you can get screened as an adult, too! Science Direct reports that more than half of new T1D cases are diagnosed in adulthood!)

That’s why it’s so important: because there are now things you can do to protect and preserve your child’s production of insulin.

And I hear the excuses all the time. The most common objection is simply, “Well, is there really anything we can do about it? What’s the point of knowing and just getting stressed out?”

Let this objection go! There are things you can do to hopefully protect and preserve your child’s natural insulin production! But timing is everything because there are three stages of type 1.

Let’s talk about the Stages of Type 1 Diabetes

There are three stages of type 1 diabetes based on the presence of autoantibodies:

• Stage 1: Two or more autoantibodies but normal blood sugar.
• Stage 2: Two or more autoantibodies, abnormal blood sugar, but no symptoms yet.
• Stage 3: Symptoms show up, blood sugar is high, and insulin is a must! 

The opportunity to identify type 1 in stage 1 or 2 — or very early in stage 3 — is so critical that leading diabetes organizations are working to make autoantibody screening a routine part of pediatric care! Yes, someday, every child will hopefully be screened for type 1 diabetes by the age of five.

Why five years old? The research from TrialNet and BreakthroughT1D continues to demonstrate that most people test positive for autoantibodies prior to five years old, regardless of when they actually start needing daily insulin therapy. 

This means, for example, that I probably would’ve tested positive for stage 1 or stage 2 of type 1 diabetes before five years old, even though my symptoms didn’t start until I was 13 years old. For more information, watch “Passing Type 1 Diabetes to My Children: The Truth Every Parent Needs to Know.”

Hey kids, we’re gonna do that T1D blood test again!

My kids are troopers. I don’t sugarcoat anything with them. When Lucy was diagnosed with celiac this summer, I explained to her that this meant I wanted to test her for type 1 again, too.

Her attitude about her celiac diagnosis was truly remarkable: she has not expressed one second of self-pity. She simply embraced the new guidelines around food and appreciates that her stomach feels better.

She was just as mature when we discussed her risk of type 1:

Lucy: “Do you really think I have diabetes?”

Mama: “It’s possible, but we don’t know unless we do the test again. If it says you do have type 1, you’d be in the earlier stage of it, and you wouldn’t need insulin right away.”

Lucy: “Okay, but I might need to take insulin later?”

Mama: “Well, we don’t know yet. But if you did test positive, we could get other types of medicine that might delay if or when you need to take insulin every day, like me. And I would do everything I possibly could to help your body protect its own insulin.”

Lucy: Okay, mama.”

I had her little sister, Violet, tested again because I might as well if I’m going through all the steps for Lucy. 

(Again, I hate the idea of potentially missing the opportunity to spot the earlier stages and intervene!)

Getting the Test & Results

There are a few ways you can go about getting your children or yourself screened for T1D autoantibodies. 

• We used TrialNet to do our screening. This requires filling out a form on their website, signing a few documents, and waiting for the test kits to arrive.
• We chose a day on the calendar when they wouldn’t be in summer camp, and when I didn’t have any work meetings. I just wanted to focus on the test. I kept the day as light as possible so I could just support the kids with the test.
• Next, we looked in our area for a LabCorps clinic. Easy to find!
• That morning, I put prescription numbing cream on the inside of their elbows to ease the pain of the intravenous blood draw. This was so helpful!!! When they’ve had blood drawn in the past, it involved many more tears and pain. I highly recommend asking your pediatrician for this numbing cream prior to the blood draw.
• We had to wait a bit in the LabCorps clinic because they were short-staffed, but we got in and out of there eventually.
• I emailed the TrialNet team to let them know our tests were done.
• They emailed me two weeks later with the results! (It can take over a month to get the printed letter results. I encourage you to connect with them via email.)

Lucy’s results: negative

Violet’s results: negative

YAY! Oh, I was so happy. I had truly mentally prepared myself for Lucy’s results to come back positive. I had already planned exactly who I was going to tell in the diabetes research world and which clinical trials I would reach out to first. 

I had a hard time believing the results simply because I was so sure that Lucy’s celiac diagnosis meant that type 1 was inevitable. Unfortunately, TrialNet only tests now for two types of autoantibodies: GAD and IAA.

But there are three other types of autoantibodies! They only test for the others if you test positive for GAD and IAA, because a significant majority of people with type 1 test positive for those two types of antibodies.

Fortunately, the two experts I reached out to both said the same thing: “If she doesn’t test positive for GAD or IAA, the chances of her developing type 1 are extremely low.”

Okay, deep breath. Just believe it. With tremendous gratitude!