The Stages of Type 1 Diabetes (It Starts Earlier Than We Thought)

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3 Stages of Type 1 Diabetes

My daughter Bisi was diagnosed with type 1 diabetes three years ago at the age of six. The first night after she was diagnosed, once she finally fell asleep in her hospital bed, tossing and turning despite the IV in her arm, I remember standing outside in the hall with my husband and a couple of medical residents, talking with them about her diagnosis. “Could this have been coming on for a while?” we asked them. I described how for a couple of years, Bisi had been almost unbearably cranky when she was hungry—to the point where I’d asked her pediatrician more than once if something might be wrong. No, the residents told us. Type 1 diabetes comes on very suddenly, in a matter of weeks, as the body’s beta cells suddenly die out under attack from the immune system. Every doctor or nurse we spoke with during the three days in the hospital (except for one, who said that our instincts were probably right), echoed what the two residents, fresh from medical school, told us.

But it turns out they were wrong.

JDRF and the American Diabetes Association, supported by other organizations in the field, recently put forth a new staging system for type 1 diabetes, where full-blown disease, like what landed Bisi in the hospital, is characterized as stage 3, part of an extended auto-immune process that often starts in infancy. This fall, Dr. Richard Insel, JDRF’s Chief Scientific Officer, explained the classification system to a group of reporters, talking through the importance of early diagnosis, and the hope that diagnosing the disease at an earlier stage could lead to breakthroughs in stopping the beta-cell destruction process—essentially, stopping the disease before it starts.

Insel explained that stage 1 is when people test positive for multiple pancreatic islet auto-antibodies—meaning that the immune system has begun to attack the pancreas. (My husband and I tested negative for these auto-antibodies, through TrialNet; our son, who does not have diabetes, is tested every year, since his status is more likely to change than ours. So far, knock on wood, he’s tested negative too.) In stage 2, people start processing glucose differently. While people in stage 2 are not yet experiencing the classic signs of type 1 diabetes (weight loss, tiredness, excessive thirst and polyuria), if given a glucose-tolerance test, their blood sugar would rise more than normal. Their A1C (a measure of average blood glucose level over a three-month period) might also start rising above normal. (The paper explaining all this in scientific terms is:

“Staging Presymptomatic Type 1 Diabetes: A Scientific Statement of JDRF, the Endocrine Society, and the American Diabetes Association.”  Being able to diagnose diabetes early—before precipitous loss of beta cells catapults someone into full-blown disease—is important for a few reasons. Right now, many children (46%, according to one study, of children in Colorado) are not diagnosed until they’re in DKA (diabetic ketoacidosis), a condition that is fatal if not caught in time. (Bisi was not in DKA when she was diagnosed; but they put the IV line in her arm to be prepared in case her status changed and they needed to give her insulin and fluid through her veins.) The later in the disease process someone is diagnosed, the more beta cells have already been destroyed. One of the things researchers are looking into is whether having more beta cells at diagnosis leads to better outcomes in terms of glucose control and long-term complications from the disease. The hope is that researchers will figure out a way to stop the progression to full-scale disease while patients are still in stage 1 or 2; right now, this idea is being tested through clinical trials, including a couple run by TrialNet.

Stages of Diabetes - Staging Slide

Researchers have gained an understanding of these presymptomatic stages of type 1 diabetes through the TrialNet data, and through studies including TEDDY (The Environmental Determinants of Diabetes in the Young), which for the past decade has been collecting data from 400,000 children genetically at risk of developing T1D. Insel described how these studies have helped change our idea of when the disease begins—and when you’d have to intervene to keep it from developing. “One of the things we know from TEDDY, which I don’t think we appreciated ten years ago, is that with childhood onset of type 1 diabetes, the autoimmune process begins very early in life,” Insel said. People who develop T1D as children have already developed their autoantibodies during the first 2-3 years of life, with peak incidence at nine months of age. This is why any efforts to head off the disease need to happen early, perhaps as a vaccine in infancy.

While someone who tests positive for one autoantibody may never develop the disease, someone with multiple autoantibodies has a lifetime risk of 100%. As Insel explained it: “The more autoantibodies you have, the more aggressive the autoimmune destruction is… the faster your rate of progression.” Another factor in speed of progression is the age you are at the onset of autoantibodies, or stage 1. In other words, while a very young child might progress from stage 1 to stage 3 in a matter of months, an adult might progress over a period of years or decades.

What would we have done differently if we had known beforehand that Bisi was going to get diabetes? If she had been tested months or years before her diagnosis, and we had seen that she was positive for multiple autoantibodies? Or if the dysglycemia (difficulty regulating blood sugar levels) we had anecdotally observed had been confirmed by a blood glucose or A1C test? We would have seen if she was eligible for any clinical trials, where oral insulin is given to try to spur an immunoregulatory response. I like to think we would have cut down on her sugar and overall carbohydrate intake, to preserve as many of her beta cells as possible (every time Bisi ate something with carbs before her diagnosis, she was tiring out her failing insulin-producing beta cells), and I know that we would have started her on insulin earlier, before so many of her beta cells had been destroyed.

So the news that JDRF was putting forth this staging system was bittersweet. The fact that diabetes starts way before the most obvious symptoms present themselves matches what my instinct told me was true, even if Bisi’s pediatrician and doctors at the hospital where she was diagnosed didn’t know it yet. Here’s hoping that someday kids will be diagnosed by their pediatricians at stage 1, and that they won’t progress to type 1 diabetes as we know it today.

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Comments (35)

  1. Concerned Parent at

    Thank you for this article. My son and I have been in TrialNet for over a year and both of us just tested positive for our second autoantibody. I am 45 and he is 10. We are headed back for confirmitory tests. We are quite troubled by the “lifetime risk of 100%” for someone now in our situation. I was curious by the notion that we could now modify our diet to help stave off the further erosion of healthy beta cells, or that insulin could be preemptively administered prior to a formal T1D diagnosis. I was told by our doctors that there really is nothing that could be done at this point — other than to consider one of the TrialNet clinical trials. Is there any information you or anyone in the diabetes community could refer me to that supports the theory that we can on our own (through diet, exercise, insulin shots, etc.) hold off the further destruction of beta cells in the pancreas? Of note, we don’t qualify for the oral insulin study since that is not one of the autoantibodies we tested positive for.

  2. Jesse Allande at

    My daughter was born with hypoglycemia and had to receive glucose at birth. Then, at age 10 she was diagnosed as type 1. I’m certain there is a correlation.

  3. Thank you so much for this important article. I went through the same thing with my son who was diagnosed t1 when he was 10, but had really dramatic ‘unexplained’ behavioural issues, terrible anger outbursts etc, for a year or two before. Bittersweet as you say, but I am so pleased that it looks like they are recognising this now, and hopefully will do more about it in future.

  4. Shonagh Cameron at

    Very interesting as I’ve always said our daughter had it from birth diagnosed at 12 months in sever DKA despite showing all classic symptons was not checked earlier.

  5. what did you mean by:
    “our son, who does not have diabetes, is tested every year, since his status is more likely to change than ours”

    is that because children may change due to all the different shots they receive growing up?

  6. jay dennis at

    Very interesting read. As a father with t1d of 3 children it is always in my thoughts that it will be passed onto them.

    Molly are you seriously trying to blame diabetic progression on immunisation? Come on!!

  7. Donna at

    My aunt was diagnosed with type 1 diabetes at age 12. Her daughter has 5 children and once a year she has them prescreened for diabetes because of genetics. I also have type 1 for now 30 years. We also had an aunt who died in the early 1920’s who past away at 18 years old due to her symptoms, it’s suspected she past away due to her type 1.

  8. jodie ward at

    Hi I have 5 children and 3 of them have t1. My youngest son had problems regulating blood sugar since the age of 6 months and even when born and was diagnosed at age 3. His behaviour at the age of 2 was horrific.
    We now have a 21 month old little girl who has also shown to struggle with blood sugar control especially when ill.
    Is there anything I can do to get her seen or tested?

  9. Laura Martin at

    By stating “cutting down sugar and carbohydrate intake” you are suggesting that sugar and carbohydrates helped bring on Type 1. They don’t. While you did try to clarify, you leave the reader with the suggestion that diet brought on her Type 1. My daughter, upon her diagnosis of Type 1, was in tears telling me she would stop eating cookies and having sweets, if it meant the disease would go away. Thanks to the media coverage of a diet high in sugar leading to Diabetes – never distinguishing between Type 1 and Type 2.
    While a diet, for ANYONE, lower in sugar and carbohydrates, is healthier, from my reading and research, Diet has not been a contributing factor the the autoimmune system attacking the pancreas and Beta cells.
    I do how ever, appreciate your overall thoughts and also have felt that my daughter’s Type 1 developed slower, than what Doctors have previously said – that it just came on. Like you though, I have only anecdotal observations, but think I know when things started to change, but have been dismissed by my pediatrician and endocrinologist.
    Interesting to note that Type 1 Diabetes is on the rise in developed countries, but not in lesser developed. Are there studies/tests ongoing in that population as well through TrialNet? To see if there are different triggers? Do people develop Type 1 later in life in lesser developed countries? Earlier in Developed? Specifically US?
    I know we can’t take back what has happened to our child, but knowing how to prevent/delay the onset for future families hopefully leads to a cure.

  10. No, it’s that he has a sibling with type 1, so he has a higher genetic risk than we do. Also, we’ve made it to adulthood without getting type 1, so while it could still happen, the chances are slim for us (knock on wood).

  11. Eric Schippers at

    What is the basis for the notion that someone with at least two auto-antibodies can alter diet or preemptively take insulin to protect healthy beta cells? My son and I recently tested positive for a second auto-antibody and we’re considering joining a clinical trial but this is the first I heard that some preemptive, protective measures can be taken to prolong the onset of T1D. Thank you.

  12. Jonna B at

    I have 2 T1d children. My daughter was diagnosed at 4 while I was pregnant with my son. I definitely noticed a change in my daughter about a year before her diagnosis. Her behavior changed dramatically, as did her eating and drinking habits, although drinking changes were much closer to diagnosis. We were told my son had a 5% greater chance of getting T1d b/c of his sister having it. When he was 2, I noticed changes in him and he was diagnosed while his sugars were in the low 300s and he was not in dka. If I wasn’t so alert to diabetes symptoms, I wonder how much longer he would have gone undiagnosed. We had chosen to not have him participate in TrialNet, although I was tested and was negative.

  13. Cindy mette at

    My daughter was diagnosed in the we at age of 23. Doctors felt she has had the disease for over 7 months. So disappointing how little Drs seem to know about this disease

  14. Ronda at

    My husband, his father, and two of my sons have type 1 diabetes. My 18 year old daughter has always had autoantibodies. She was a part of PANDA for many years, although they haven’t kept in touch lately. She currently has very high insulin levels and a slightly elevated A1C. We have been told for 14 years that she would soon develop T1D. Knowing this information has done absolutely no good. After all these years, we still have no idea how to help her. She was a part of an oral insulin trial in which she received a placebo- very disappointing to find out after such a long period of participation. The whole thing is very discouraging. So don’t feel badly that you didn’t know sooner that your child was headed toward diabetes. Knowing does no good. It just causes you to be worried for longer.

  15. Michelle Goldthwaite at

    The doctors told me the same thing when my son was diagnosed. They said it probably just happened over the course of a few days. I always wondered about this. My son would get unreasonable when he missed a snack. One of his teachers even commented about this. She said she had never seen a kid get so upset when he didn’t get his snack. She had been teaching for over 20 years. Thank you for this article. It definitely reaffirms what I suspected all along.

  16. Ali at

    Our boy was diagnosed a month after his 4th birthday, things hadn’t been ‘quite right’ from 6-9 months of age although it was v. subtle at that point. Roll on to 2 years and the medical profession eventually agreed something was wrong but they couldn’t figure out what. We were put under the pediatrician who sent us to a clinical psychologist. At age of 3 he had gradually become uncontrollably violent at certain times of day (-nothing like a toddler tantrum) 11.30 and 4.30, I could set my watch by his outbursts! Once I realised this it was obvious the issues were linked to blood sugar but persuading the medical profession of this was challenging. Eventually someone listened and testing overnight at hospital was arranged ‘to rule it out’ I was told. ‘It’ being blood sugar issues. No surprises it didn’t rule it out and he was diagnosed with type 1. He was the earliest progressed case that our hospital had ever diagnosed. Once he was put on insulin about a month(?) later he became a different, calmer, happier child. The outbursts stopped and life took on a new normal. A bittersweet normal – we were relieved that we knew the reason for his outbursts but were obviously devastated that he had type 1. We suggested like you that it had been going on for most of his little life but got shot down by the drs who said it only progressed over a few weeks, we have maintained up until this day that they were wrong. I’m so pleased to have come across your article, it’s backed up exactly what we thought!

  17. Barb at

    I will go further than this article. My son, who was diagnosed at 9 months of age, I suspect, was symptomatic before birth.

    I delivered a full 3 weeks past his due date. He was a planned pregnancy and I know when he was conceived. Even with being 3 weeks overdue, he was only 6lbs, 10ozs.

  18. ILLA Duke at

    370 county rd 229 this is wonderful ! Ihave two grandsons that are type 1,Diagnosed at age 12 and 4. Surly would have been wonderful to know !!!

  19. Kate at

    What were her symptoms before being diagnosed? Wondering if there is more then just irritability.

  20. Janet Hunzinger at

    This article was very interesting and underscores the fact that as parents you need to trust your gut and demand testing of our children. My son was diagnosed as a type 1 diabetic at 18 by me first and then by his doctor who dismissed it and me initially but ordered the test upon my insistence. We got the results at 10:45 pm and had to head to the ER for IV fluids and insulin, what an experience

  21. Vicki Milne at

    A really interesting article.
    This is what we’d suspected of my 11 year old son who was diagnosed 8 months ago.
    In the year before his diagnosis, his school teacher noticed that his concentration levels waned before the other children’s, before morning break. She suggested that he have a mid-morning snack earlier than the other children. This helped.
    This was a year before he displayed any of the usual Type 1 diabetes symptoms. There definitely needs to be more research into this.

  22. When I heard about this study from my local JDRF chapter, I asked why no studies are ever done on what kinds of outward signs parents should be on the lookout for. No one could answer me. It seems to me that would be helpful for parents. Similar to Vicki Milne’s experience above, my daughter was symptomatic without me realizing for several months before ending up in DKA and nearly dying, which is when she received her diagnosis at age 11.

    On top of the behavioral changes, she did have other potential signs for many years. A retired dermatologist asked me, just out of curiosity, if when she was a toddler did she have problems with her skin such as eczema or being prone to yeast infections on her skin. She was — all her life. He told me he’d often seen that with kids who later became type 1 he and never undertood why kids with re-curring skin issues were not routinely blood tested for type 1.

    Ever since, I’ve asked many parents about their children’s skin. Many had similar issues as mine did and others mentioned their kids took a long while to heal form minor scrapes and cuts. I can’t help but wonder why no one is doing a study that could actually help us NOW.

  23. At 9 mo of age, my grandson was diagnosed 6 weeks ago with T1D..he went in to DKA with all it’s seriousness following a febrile viral illness appx 2 weeks prior.. We are interested in all and any research with Beta cells.. thank you for this article. As a grandparent I would do whatever to take this terrible disease away..

  24. In response to Laura (and Jodie’s question): you’re of course right that eating sweets does not cause type 1–it’s the auto-immune attack. But studies are starting to show ( that in children where the auto-immune attack has started (stage 1), eating lots of sugar can speed the progression to full-scale type 1 diabetes. This makes sense to me; a person with a working pancreas has about a billion beta cells, but they think that only about 300,000 are necessary to maintain normal glucose control. For people whose beta cells are slowly (or quickly) being killed off, I think it makes sense that asking those beta cells to produce a lot of insulin by eating lots of carbs would speed along that process. So Jodie, if I were in your shoes, I would limit your daughter’s sugar intake (maybe especially when she’s ill?). I’m not sure that any of the Trialnet studies I mentioned are for children this young, but it would be worth looking into. There may also be other prevention studies going on. Maybe also meet your other childrens’ endocrinologist? The thing is, that I don’t think the 3 stages of diabetes thinking has really taken hold in the medical establishment yet.

  25. Also, Laura, yes, there’s a big study going on, through Diabimmune, I think (I know JDRF is one of the funders), comparing populations in Finland and Karelia, in Russia. Even though the two populations are genetically very similar, the rate of T1D is much higher—one of the highest in the world. So they’re studying what environmental differences there might be. Karelia is much less developed, and I know they’ve found big differences between the microbiomes of people in Karelia vs Finland.

  26. Eric, I think they’re still testing out the “taking insulin” theory—I don’t think they know. But I think the idea, behind both dietary changes to eat fewer carbs and taking insulin is that by doing so you would slow the destruction of the remaining beta cells by asking less of them.

  27. Kate, in terms of Bisi’s symptoms before she was diagnosed, the main thing was extreme irritability when she was hungry. But she also didn’t have much energy; she would often come home from kindergarten and fall asleep. Also, there were a couple of times when she drank something sweet, like a fruit smoothie, and then threw up; in retrospect, I think this is because her system couldn’t handle the sugar, since in both cases she hadn’t complained of a tummy ache at all. The last thing was that her desire for sugar skyrocketed in the months before she was diagnosed. I think this was because her body wasn’t producing enough insulin, so the sugar craving was a way to try to get her beta cells to produce more insulin.

    Laura, sorry, I meant to say earlier that Finland has the highest rate of T1D in the world (and Karelia’s rate is much lower).

  28. Eric Schippers at

    Thanks for the reply Katie. We’re also proactively taking Omega-3s and Vitamin D3 based on studies I’ve seen from Norway and Colorado. Thanks for sparking our exploration of preemptive efforts to try to hold off advance of T1D!

  29. Liane at

    I am a parent of a child in TEDDY study. I also have a sister, an uncle, and a cousin with T1D. My great-grandmother also had it. I was nearly ecstatic to be asked to have my daughter screened when she was born and we continue to participate in the search for a cure/prevention as she is part of the 5% having the highest risk genetic factors for this horrible disease.

    I want to clarify, though, that TEDDY tested 400,000 children but currently just under 8,000 children participate in the study globally. This includes 3 sites in the USA, one in Finland, and a couple other European nations. All are working to identify environmental triggers and differences between the sites are watched as well. For instance, Finland is much more genetically similar. So, it makes sense that they have a higher incidence. However, they also see a higher development rate among their participants, who all have the gene, than do the participants in the USA, who also all have the gene. This points to something more than genetics, which is what TEDDY is designed to hopefully identify.

    I also want to back you up on one thing. Based on data from this research, there is NO LINK between vaccines and T1D.

    However, the gene for T1D often travels with the gene for Celiac disease. It was because of TEDDY that our daughter was diagnosed with Celiac almost immediately when it developed. I had never even heard of it. She is one of over 300 participants in TEDDY that have it. So, please, if your family is affected by this terrible disease, please educate yourself on Celiac as well.

    Katie, thank your for sharing your story and your insight. And I hope we find not only a prevention but better treatments and a cure for your child.

  30. Jamie at

    Jodie, you can have your 21 month old (and any other siblings) tested through TrialNet. It’s free and they can screen the kids annually until they turn 18. They have participating centers in the US, Canada, Australia, Germany, Italy, Finland, Sweden, the United Kingdom, and New Zealand. They will also send kits that you can take to a local laboratory and have sent back to one of the centers.

  31. Jac at

    I came across this site and glad I did, how great. To add to the conversation, my husband was diagnosed with Crohn’s disease in his mid twenties, and then by 28 he developed type one diabetes as well. Over that year prior there were definitely changes noticed, but feel dumb now because I did not see them until later when he was having dizzy lightheaded spells and got tested – bam! Sugar was 32 or so! (Canadian system, mmol/L I think). The year prior, as soon as he had an alcoholic drink or two, it would have a far greater effect than normal, which was odd. His mood in general was more.. Short. And stressed.. Not his usual self but I chalked it up to life changes and job stuff. But it was noticeable and I don’t think it was necessarily from just life stress. He had a type of yeast infection, which the Drs never thought to test his sugars at all. Which would have let him be diagnosed approximately 6 months earlier! By the time we were in the hospital seeing the endo, they couldn’t tell us if it was type 1 or type 2. He had lost a lot of weight over the year also. They tested for antibodies…. None! But then bloodwork and tests upon tests revealed he did in fact have type one, but no antibodies were found. Which was odd. I think this was a slow progression and that is perhaps why none were found. His insulin levels were either low or none.. And essentially all of his cells were destroyed at this point. I believe the c peptide test also showed it was supporting a type one diagnosis. After some research, it seems crohns and type 2 diabetes go together usually, not often type one.. But to me the autoimmune attack his body was already going through from crohns may have something to do with his development of the type 1 diabetes. I find it very surprising also, that his body was not in massive ketoacidosis with his high sugar. The doctors were all amazed at how he was still walking around, working and functioning normally, with sugars sustained that high. They thought his body handled it quite well considering.. Maybe this is due to a slower progression? Who knows for sure. I do remember a year before his diagnosis he went to the dr complaining of a lot of leg cramping etc.. Turns out he was drinking more water than normal and running to urinate much more frequently too.. Didn’t think to tell me that part unfortunately until later. But I’m pretty sure those leg cramps were also brought on by dehydration… Which if his sugars were high make you pee more… Trying to catch up with the h2o. Man I kick myself for not picking up on this in the earlier stages…. Anyway it is what it is and he’s doing well on the Omnipod pump, has since had a surgery for fistulating crohns, and is also on humira for this. It’s a lot to juggle and to try and eat a crohns appropriate diet and a diet for diabetics.. A lot of leafy greens and fibre and whole grains can kill his guts… We are trying to make it all work and keep him healthy. A struggle sometimes… I worry about the future… Hopefully they can find a cure for type one. Or like this page says, something that can prevent it from going full fledged attack mode on that pancreas. Sending strength and good vibes to all of you who have diabetes in your lives. I keep thinking we are so lucky to be on this earth in this era, where we can manage these diseases and survive. Think of 100 yrs ago.. We would not be so lucky. I think also on the other hand, all the toxins in our modern everyday lives and the types of food we eat contribute to all of the autoimmune diseases we see nowadays… Such as rheumatoid arthritis as well. Why are we getting sicker as a population in these developed countries? Or is it just that those in less developed countries are not diagnosed or survive. Food for thought.

  32. Angela at

    I found out I was type 1 at the age of 34, I then realised why I had so many behaviour problems for about 3 years before I was diagnosed, so yes it can take years to realise,I had been tested about 4 times for diabetes growing up but my blood sugars were always normal.

  33. What a fantastic article thank you. My husband is type 1 and has been for about 37 years, he was diagnosed when he was 6, my daughter was diagnosed 5 years ago when she was 8, one son was diagnosed a year ago when he was 10 and finally my other son was diagnosed a couple of weeks ago, he is 7. All my children were thankfully diagnosed early. We always knew there was a chance of the children getting diabetes but we never suspected all three would.

  34. Annie at

    BUY Dr. Berensteins diabetes book. Explains how diet can give you normal sugars. It will save your life!

  35. Robyn at

    I was diagnosed at 57. With antibodies over 4000 & 2000 my endo said ‘full blown T1D.’ Two weeks previously my GP was saying T2D but ‘a most unusual T2D’ as I wasn’t overweight, exercised and ate a fairly healthy diet. She said this despite the fact that I’d lost 5 kg without trying over a few weeks, was waking with headaches, a brain fog that took hours to clear, leg cramps at night and extreme tiredness. I had disregarded what I now realise was increased thirst as I have always had a dry mouth and drunk a lot of water. Once the T1D diagnosis was made she immediately sent me to an endo with the comment “We only treat T2D.” GPs need to be more knowledgable about Type 1. Two years previously I was classified as prediabetic due to an abnormally high sugar level on a random blood test. Dr then had asked if I’d had anything to eat but no I had fasted. Nothing else was said or done apart from saying I was prediabetic. My sugar results over that period were all higher than normal. I went for a GTT after GP casually said “We’d better a checkup on your sugar. Nurse wouldn’t do the test as the sugar in my urine was off the scale – after fasting. GP panicked. Asked several times if I was feeling sick – expecting ketoacidosis. My endo did say it could’ve been coming on for years. With no T1D in the family but two grandparents with T2D I knew nothing. So it is interesting to read this article and have some form of confirmation that what I have suspected is likely true ie. It was a longer process than usually thought.

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