Are we closer to a universal screening for T1D?

This would be a huge improvement for many people if this new test was validated and then widely adopted. Preventive treatments for T1D would a) all of a sudden likely have many more potential volunteers for clinical trials b) potentially reach many more people. And my guess is that DKA would become much, much rarer


Great news. I know there are many people mis-diagnosed that go on to have bad repercussions later.

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I would love to see it! But this is very far out: ZnT8 is only one of the several markers that need to be tested to get complete coverage, I think the newest – and possibly the most expensive? It leaves large gaps in coverage: to get to high % detection, you must cover several others. In the article above, for instance, this new test would give 76% positive detection (better than any other ZnT8 test) and 97% negative detection (really good).

Given the 76% positive detection rate, you do need more markers. The last time I checked (1 year ago?), you needed at least 3 different markers to do a good job at it.

I am curious about the false positive/negative rates from the test. I did not notice any mention of it in the article. Maybe because it is too low to matter? That would be nice!

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Btw, here is a wiki we put out in Spring about antibody tests:

Does it need updating?

I think the point is that you could screen with this ZnT8 in conjunction with all the other antibody markers and conceivably get to 99% sensitivity – or at least that was what I gleaned from the article. It would be pretty expensive still, but my guess is that if the sensitivity and specificity are good enough for the combined markers, it would still be cost effective to screen kids at least once in childhood.


Pardon my ignorance, but is this different from what they do with the Trialnet clinical study? I have all three of my sons in it, and we get a blood draw once a year. I was beside myself when I found out this kind of testing was available because it seemed, if it were, they could include it in routine testing for children in families with type 1. Is Trialnet not screening to the same extent?

@Nickyghaleb - What I gather from the article is a revised approach (full-length) to the ZnT8 test.

Current testing that uses IAA, GAD, IA2 and (existing test) ZnT8 is about 96% accurate in confirming Type 1 Diabetes diagnosis as per:

The revised approach (full-length) to the ZnT8 testing would increase this to 99% accuracy per the originally mentioned article.
If I read the article properly.

However, what I would see as the larger issue is the cost of testing everybody. I am sure the diagnostic lab testing companies would be completely behind this approach.

With regards to the point raised on Trialnet.

I am not clear on what testing is done by Trialnet. One place I read is they run three cheaper tests and only add the more expensive (existing) ZnT8 test if anything is picked up by the first three tests. Trialnet says it takes 4~6 weeks to get the results back which seems excessively long for no good reason. It is hard to believe the testing is not actually completed within a couple days. The answer that Trialnet gives for why it takes so long is also completely non-believable:

Why do results take so long?
TrialNet forwards all samples from screenings and studies to specialized laboratories across the U.S. This way, all samples are processed in a consistent way, meeting strict requirements for scientific research. The process takes a little longer, but it’s an important step in ensuring you receive the most accurate results.

I am well aware of how long it takes to ship blood draws across the country to specialized labs, to have testing done and have the results available. This is actually measured in days. Not 4~6 weeks. So aside from not answering the question, as I see it, they are flat out lying about the reason for the 4~6 weeks.

I also do not agree with how they describe what the test means:

If you test positive for two or more autoantibodies, you are in the early stages of type 1 diabetes.

Really? Any chance they have reputable studies to back that claim up?

Safe to say that I may (possibly) not be the biggest fan of Trialnet.

Our Ped Endo wrote orders for the other kids to have T1 & Celiac antibody testing from one of the national commercial diagnostic lab testing companies so it was simply picked up by our insurance.

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I proudly have managed to stay away from using any kind of social media for almost 7 years. I’ve never subscribed to anything on YouTube, dropped Facebook 7 years ago, never touched twitter, etc. I thought it was all junk.

This exchange is proof it’s not. I have 3 sons who are enrolled in Trialnet, and I have put a lot of faith in it based on the fact there was NO testing down at the ped’s office. I have one son who has Celiac Disease, has been hospitalized for acute acidosis (which we were explained was a diabetic event without the diabetes), and has had unusual results on blood work having to do with the pancreas. We were told not to worry about any of it. He’s also had a1cs as high as a 6.3, morning BGs as high as 120 and random BGs midday at as high as 230. Again, we have been told not to worry. I was using his yearly Trialnet clearances as confirmation that we… didn’t need to worry. And now I’m worried.

So your pediatrician can order a genetic test? Something more substantial than “most likely won’t develop type 1 diabetes within the next 8 years”, which is what we’re told with Trialnet. Thank you for the thoughtful post, by the way. I’ve been plugging on along figuring we would catch anything serious as long as we took them down for the yearly test… and waited our 4-6 weeks for them to get back with the good news. :wink:

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Sorry to hear that. We have experience there. We work pretty hard to avoid accidental contamination.

For a non-diabetic child that would certainly raise questions for me as a parent which I would want my Doc to discuss with me.

Sorry - not my intent.

Probably but none of those tests were genetic. We did not opt for the genetic Celiac tests. I more or less do not believe in the purpose of the genetic Celiac test. If you get a negative then it means you almost certainly can not get Celiac (small percentage or slightly different variety of Celiac that slips through the cracks on that or something along those lines). But if you test positive it only means you MIGHT get Celiac. Not that you WILL or that you PROBABLY will. And with one child having Celiac, I figure the likelihood is all the kids have a darn good chance of having those genetics so what is the point. No - we just did the antibody testing on both Celiac and Type 1.

We did not keep up with the testing although the GI Doc in particular really wanted all the siblings tested for the Celiac antibodies each year. No real reason for NOT doing the annual testing. Get busy with stuff. Just dealing with life. The Celiac is tougher as some people could have Celiac and their symptoms might be invisible from the outside. But for the Type 1 - at this point, I have a hard time believing any of my other kids could have Type 1 and I would not spot that from 100 yards away. I missed it on my first but I know a whole lot more than I did then. I just can’t see somebody else having those symptoms and me not picking up on it. So I don’t worry about the Type 1 testing on the other siblings.

Hey, thanks. You’ve given me great information, and I appreciate it. Yes, celiacs is tough, and we also have to work hard, but type 1 would really be tough…er. :grin: we’ve got a great doctor who will help us get test if he needs them. It’s just trying to determine when he does!


And good night!


HI @Thomas, there are a few big studies showing that you have over a 99 percent chance of developing Type 1 diabetes if you test positive for two antibodies.These studies followed people over the course of several decades… so some people might take 50 years to develop Type 1 (which I believe was the case for a set of idnetical twins, one of whom was diagnosed decades later). I am going to try and dig it up tomorrow when I’m not up correcting high blood sugar in the middle of the night.

there aren’t any genetic tests that can show if your child will definitively get type 1 or celiac – there are genes that up the risk, but even those probably need an environmental trigger. So maybe it ups the odds a factor of 30 – but you still have, say, a 10 percent chance rather than a 0.3 percent chance.

It’s great that you are confident. I think the sad thing is that this is NOT universally true. Many kids who are the second diagnosed in their family are only IDd in DKA, shockingly. Very, very few people who are told via TrialNet that they have two antibodies get to that stage.

Almost nothing is universal particularly when it comes to people’s knowledge, behavior and actions.

By no means was I attempting to speak for anyone other than myself.

The link which I previously quoted stated a 86% detection rate for Type 1 when using the IAA, GAD and IA2 antibody tests. Not bad. Adding the ZnT8 (currently existing test) increases this to 96% percent.

Not to discount the other study which you may refer to, but I would have as much interest in a test which says somebody is going to get Type 1 sometime within the next 50 years as I would with the Genetic Celiac test that states somebody has a 30% change of getting Celiac at some point. I consider those sorts of tests (again - this is me personally and not speaking for anybody else) to be worse then useless and only to add to an overall anxiety level for zero purpose.

I am extremely interested in tests that have a high level of accuracy that state what is or is not going on RIGHT NOW.

@Michel - I found a post written earlier (on a different forum) which I think pertains to your question. Note that these numbers are not from a study. These are statistics of real world results from a major lab company.

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Our sons who lending wanted him tested for Celiac recently due to digestion issues but after the biopsy came back negative we were very relieved… We didn’t want Celiac piled on top of diabetes. This has to be tough because of having other children who can eat certain foods while your son with Celiac can’t. Thoughts are with you as you manage this!

We just stick to grass. It meets everyone’s dietary needs. :grin: my oldest has celiac disease, and my youngest has a very severe milk allergy. (My middle one is living the dream). We travel with luggage full of epis and insulin and soap hand wipes even when we go to the bus stop. But I’m a positive thinker (except for when I’m complaining about everything), and there’s a beauty in it. I have kids who don’t remember the taste of McDonald’s, and we haven’t ordered a pizza in 2 years. It’s freedom. (Except for the kettle corn popcorn which is, unfortunately, gluten and dairy free).

We’ve all got our battles… if life weren’t so challenging, it would be dull! (I keep telling myself that anyway). :grin:

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So then I’ll just continue on with whatever routine testing we have in place and with the general anxiety I already have over everything related to their health. It’s worked well so far. (Moreso for them than for me) :grin: