Hi ,I am a early adult onset t1d. I was told my diagnosis was a complication of a major infection. I ended up in DKA at my diagnosis time. I also have no t1d relatives on either side. Life goes on and I don’t let my condition stop me from doing any activities I want to participate in. I have been on insulin for 24 yrs. Unfortunately low and high blood sugar is part of being on injected insulin. I work with many t2d who cannot wrap their heads around rapid changes in BG, so do not always follow another " experienced diabetic " down the wrong path. I encourage you to educate your entire family about the facts of your son’s treatment and struggles. One last thing to remember is that radical highs and especially lows in sugar can create behavior issues that can make living with someone difficult at times. I get very short tempered when my sugar gets low and now it’s my family’s first response to ask what my blood sugar is when I am grumpy. You all have to learn how to work with the issues and go on living your best life, don’t let it stop anyone from doing anything that is important to them.
As others have said Type 1 diabetes is now known as not being inherited, though there may be a genetic weakness that lets it happen more easily when certain viral infections arrive. The THEORY is that these viruses, most notably the 1 called Coxsackie “B” that when it appears to the immune system an antibody is created to fight it. Unfortunately, the antibody doesn’t recognize the slight difference in the pancreas’s Beta cells (that create all of our natural insulin supply) are killed off slowly.
At least that was the theory that started in the '60s, for all I know it may have been discarded and nobody told me? I have a lot of experience with it, mine was diagnosed on April 9, 1956, So yes, last Friday was my 65 Diaversary (Diabetic Anniversary as we call it around here.
I am somewhat exceptional here, my aunt developed Type 1 perhaps 10 years before me, but unfortunately, she had married and moved away from home, so Mom didn’t hear about the symptoms and nobody knew what I had. Finally taken to an ER screaming with stomach pain, had my appendix removed by an idiot surgeon, but DAD knew Mom had been asking if it could be diabetes but doctors didn’t know much about Type 1 at that time, they were only used to Type 2 and I wasn’t overweight and middle-aged, so they got it wrong. Dad called around and found a brand new Pediatrician who WAS taught about T1d in college shortly before, so he got in there and they started pumping in insulin. Took 6 weeks to get out of the hospital.
Anyway the point is that you should be glad this happened NOW, rather than back in the dark ages when I got it. You will definitely find it stressful learning about it, but don’t try to get perfection, just reasonably stable glucose reading with normal variations, and the occasional crazy seeming inexplicable reading. Remember there are 42 things that affect blood glucose levels, and not all of them can be counted or clearly perceived, so unexpected readings WILL happen. Just correct it and go on, NEVER criticize the diabetic for them.
Hopefully someday a cure will be found, but don’t hold your breath.
I can’t add much to the discussion of the original post here. Everyone else already said it. But I did want to respond to ckat.
As has been said, we don’t really know what causes T1D. So it’s hard to say why it would be on the rise. I won’t debate the science of GMOs (though I will say that in general there’s a lot of misplaced fear and bad information around them). I will note this:
I’m in my 40s. In my grandfather’s day, T1D was an automatic death sentence. It wasn’t until insulin therapy was developed that we had even a chance to live. When my parents were young, there was insulin but no BG meters. Diabetics had to measure the ketones in their urine and use that to make an educated guess about how much insulin they should be taking.
When I was diagnosed in 1990, we had BG meters, but no CGMs and the meters had a 20% error factor. They also needed a fairly large drop of blood. We’ve come a long way since then.
But my point here is this: Gen X was effectively the first generation of T1 diabetics that was reliably able to have kids. If there is a genetic component to it, my generation being able to survive and pass on our genes could well account for a rise in cases. It could also tell us more about the genetics of the condition, and might lead to future generations where it is more common for a family history of T1D to exist.
ETA: Side note on the subject of diabetic history and GMOs. For decades, insulin came from animals. Most diabetics used purified pork insulin. That is, insulin was extracted from pigs at the meat processing plant, purified, and given to us to inject. Some did better with cow insulin. They were close to human insulin, but not exact. Humalog and Novolog (introduced about 20 years ago) were a big step forward. Actual human insulin made in the lab. It works better, it works faster, and your body is less likely to reject it (insulin resistance). You know how it’s made? They take yeast and introduce a virus which forces the yeast cells to produce human insulin, which is then harvested and purified. (The yeast cells have no way to excrete the insulin, so they keep producing it until they explode. And then the next batch of yeast has to be given the virus so it’ll do the same.) Every single one of us taking human analog insulin instead of beef or pork is living off of GMOs.
Hi @WearsHats welcome to Type One Nation. Hey that’s a nice summary but it’s not yeast and there is no introduction of virus. I worked on a biosimilar glargine factory and the main cell was E.coli, a bacterial GMO, and widely used to produce insulin (glargine and otherwise) . Modified yeast cells are used for a variety of pharmaceuticals, but not insulin. This E. Coli has inherent DNA modification (GMO), so all the cells can replicate insulin when the cells divide, and it is preserved in a master cell library so when it is introduced to growing medium, it replicates, inadvertently making insulin. Then the E.coli are chemically dissolved and the bits that are not insulin are removed, basically by filtration and chromatography . There are stabilizers, pH buffers, and preservatives added to the water. I thought maybe you’d find it interesting. Cheers.
Paul @WearsHats , try not to mix Autoimmune Diabetes [T1D] with Monogenic Diabetes [MODY], their appearance is similar and MODY, cause by a defective gene passed from generation to generation, which is often misdiagnosed as TypeOne.
You gave a good description of the animal extract insulin, but I’ll suggest a description as “PARTIALLY purified”; I remember occasionally seeing some particles in my supposedly "clear Regular U-40 vial. I will also fill in the blank between the original Pork/Beef insulin [which saved me from the 10-year death sentence in the 1950s] and the Analog RAPID-Acting insulin [Humalog,1996 and Novolog, 2003. In the 1970s. FAST-Acting Recombinant DNA ( rDNA ) insulin Humulin and Novolin] arrived. Along with the rDNA insulin formulation came standardization of insulin strength at U-100; this meant we also had to switch to the newly available plastic “thrtow-away” syringes.
Thanks for the info. Been a while since I looked into it. I don’t know if the technology changed or if I was just misinformed back then. Important to have the facts straight. And cool to know a bit more.
Diabetes is complicated. We like to categorize everything as type 1, type 2, or gestational, but there are actually hundreds of types that we generally gloss over.
But the question at hand is type 1. Ckat said the CDC is reporting a 30% increase in type 1 diabetes in recent years, and suggested that this must be due to an environmental cause. As I said, we don’t know what triggers T1D (though we’ve probably learned a fair bit since I last looked into things). So we can only guess at why there might be a rise. We know type 1 is autoimmune, but we don’t know the root cause. What’s making the immune system target beta islet cells?
As has been mentioned above, it’s possible there’s a genetic component to it. Some combination of probably recessive genes that make certain people more likely to develop autoimmunity. We haven’t identified those genes, as far as I know, but there have been some candidates and I’m sure more are being investigated, particularly as the field of medical genetics has advanced significantly in recent years. It’s rare that there’s a single gene that causes something like this, but multiple genes can contribute and play off each other in complex ways.
My thought, then, is this: If there is indeed a recent spike in T1D, we don’t need to jump to the conclusion that GMOs are at fault. (We’ve been eating GMO food for decades, and… I’ll stop. That’s a whole other topic.) The fact is that it’s only recently that juvenile diabetics were able to survive into adulthood and safely have children. So if there are genetic factors that make people more likely to develop T1D, then the last generation or two would have seen an increased incidence of those genes in the overall gene pool purely because more people were able to pass them on. That could be an important factor in the reported rise in cases in the current generation.
Hello @mm92599, I was diagnosed in 1945 when I was 6. I do not have any relatives with type 1 diabetes. That is not unusual. My children and grandchildren do not have diabetes. I have lived with type 1 for 75 years, and I do not have any serious diabetes related complications. Now, in the 21’st century, your son has an excellent chance for a long healthy lifetime with diabetes.
I’m so sorry about your son’s diagnosis. My son was diagnosed 2 years ago at age 15. It has rocked our world. Basically, you are in my thoughts and prayers. It does get easier, and my son manages himself well with the latest technology. However, as parents it breaks our hearts. Blessings to you and your family.
Hi Mike, Welcome to the forum ! I was diagnosed at age 8 with T1D and there’s no family history whatsoever. The first 10+ years my sugars were out of control, I was too young to be diligent and angry that I was different from other kids. BUT that was in the 1970’s and I eventually gained excellent control. After 49 years with T1D, I have only minor health issues and no typical diabetic complications. This is a combination of good habits with good luck. Your child will have an easier time, as the treatments and devices have improved dramatically in the last 10 years. Not an easy time, but easier. I know it’s difficult, but try to be patient as you and your child learn how to manage the disease. Find a good endocrinologist and don’t hesitate to ask him/her questions. After all of these years, I’m still learning 
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Hi Mike,
My son DKA’d a week after his 17th birthday in August of 2020. We have no relatives with T1D. Initially, We thought it was Covid so we kept him home and tried to “ride it out.” Even our phone calls to his GP didn’t have any of us thinking T1D. We are almost a year into his diagnosis now and what a wild, emotional ride its been. We looked back and thought “why didn’t we catch the signs?” He would go through bouts of extreme fatigue and listlessness and then be fine. Lots of stuff. But how can you “read the signs” if you have no clue what kind of “signs” you’re reading? Let that go and focus on the here and now and helping him accept, understand and flourish.
Jacob took his diagnosis in stride and I thought, “wow, wonderful.” 9 months later, he got laid off (unrelated), one of his best friends died from a DKA, he & his gf broke up and he DKA’d from his second dose of Moderna. He refused to go to the hospital and (we’ve had some close calls the past several months, so I knew what to do to help him get his levels back on track. It’s been a very scary month or two but what I learned was that my son was holding in some very real PTSD and that kept him afraid of everything since he came home from his week in hospital Aug 2020. He checked out of so many things he loved and I just didn’t realize.
I tell you this because I have learned, during this brutal month (year really) that Jacob’s mental health is just as crucial as our carb counting. In May, I finally got him to talk with a therapist. He speaks with her weekly now. And every morning we have a chat with my coffee & his water. we talk about what kept him up last night, what he’s excited about for the coming day, week. Which friends he’s planning on connecting with this day.
Jacob is doing so much better. He’s back to lifting weights, hitting the treadmill, jogging with his dog. He’s reconnected with friends I didn’t know he’d alienated. He understands that he was so overwhelmed with his diagnosis that he allowed the fear to take over and I know that I didn’t step in because of the false bravado he projected. Together (I’m a single parent) we are going to keep him on this positive path and keep him healthy and positive.
I hope you, your son and your family are melding into your acceptance/understanding of T1D. We’ll keep you in our thoughts.
This is such a powerful story! Thank you for being there for your son, and for sharing your journey with us. In all seriousness, it’s this kind of sharing that makes this forum the wonderful resource it is. Not only are you supporting your son, you just lifted up every person who reads your post. Thank you for shining a little light into what can sometimes feel like an awful lot of darkness. We are here for each other. And that makes all the difference in the world. 
I was diagnosed with Type 1 Diabetes in May of 2021 and I have no family history of diabetes of either type! I was in a DKA and transferred to the ICU when I was diagnosed. My doctors seemed confused that there was no family history, but I did my research and it’s quite common
I had a similar experience as I was diagnosed only 10 months ago. I would love to talk to your son and give him some tips if that’s ok with you. I am 15 and this is my email if he wants to talk:
chloeswanner@gmail.com
Remember it only gets better!
Hi Kara, I see that you’re using a CGM already; that’s great! My son has been using G6 for the past month and it’s been a game changer. Initially, Jacob kept with what he’d been taught in hospital but he’s finally on board with the concept of CGM.
What a learning curve this has been for us. I hope you are doing well and moving forward with your diagnosis.
The environmental influence is a virus most likely. My diagnosis 50 years ago was due to the mumps, a virus. Covid infections has increased T1D by 30%. It may take several weeks to several years after a viral infection for diabetes to appear. Many viral infections may go undetected but still trigger the immune system to attack the beta cells. Environmental influence? Absolutely.
Hello, my name is Diedre and my daughter was just diagnosed on 5/14/21 with t1. At the time she was 8 she just celebrated her 9th birthday about 10 days ago. This all came as a surprise to us because she is active, until now the only health issue she has had was her appendix was removed at the age of 5. When I took her to the ED in May she was in DKA and her sugar level was over 300. Since then we have been trying to keep her numbers under control and we seem to get her in the normal for about a week or two then shes either on the low end or the high end. This is very frustrating as a parent but I will say she is taking it like a champ and has not let t1 diabetes slow her down one bit. Any helpful hints or tricks would help this mom keep her sanity. 
My great aunt on my mom’s side of the family had TI and my cousin on my dad’s side of the family has TI. My paternal grandfather and several uncles and cousins have Rheumatoid arthritis, along with my aunt who has lupus. There ‘s a lot of autoimmune disorders on both sides of my family, including hypothyroidism and psoriasis. There are a lot of treatments available now. There are so many more tools available than when my aunt was diagnosed in the 1950’s.
Thank you for the words of encouragement!
Thank you so much for sharing this.