How did Type 1 diabetes ever become defined as a childhood disease?


#23

Many thanks to all for your perspectives and responses. I especially appreciate the deep dives by @DrBB, @Terry4, and @Tim12. You guys are awesome. As many of you know, I was misdiagnosed despite being hospitalized in DKA, and I advocate to end the public health crisis of misdiagnosis and I have a blog on adult-onset Type 1 diabetes and misdiagnosis. I am just trying to understand where the myth originated that often leads to misdiagnosis. Again, thanks to all for helping me in this process!


#24

Thank you so much for your words! I have been type 2 for 3 years now and I am having such a hard time not blaming myself. It’s all the things I hear in my head…you did this to yourself, what did you do wrong, if you would have not eaten all that chocolate! I know my struggle is not as hard as type 1 so I don’t feel I can complain about my issues. But I really feel you get it, we are all together in this nasty thing called diabetes.


#25

@Sandy31 – Dealing with a glucose metabolism dysfunction is just plain hard work. I’m sorry you have to live with the rampant disinformation in the general public.

You didn’t cause your diabetes! Blame and shame serve no useful purpose.

That stuff that you hear in your head, I strongly suggest you write it out longhand in very descriptive terms. Then, burn it to make it go away!


#26

Don’t blame yourself. You can’t change your DNA. Do your best going forward.


#27

The way I deal with it is to look at all the people who eat lots of simple carbs, bread, pasta, rice, soda, etc. etc. and they don’t get diabetes. It then follows that there must be more than simply eating the wrong foods to getting this disease. Good luck!


#28

Well Melitta, not to diminish your research, because it is weird that most of the earlier patients were adults, but got named as having Juvenile Diabetes. But I do have to say that it’s a good thing that they were given the name “Juvenile,” because it creates a difference between Type 2 and Type 1. With Type 2, it has a stigma that people didn’t really take care of themselves in terms of food and somehow got the disease (which is also far from the case). However, with Type 1, I believe they were trying to create the image that this was something that happened through biology. Therefore, when you have people on TV make statements such as, “by eating these foods, you’ll be less likely to develop diabetes,” at least Type 1s are not lumped with that category, being that Type 1 is more of a problem with genetics, rather than lifestyle choices. I might be talking out of my behind, but that’s the best guess I can give you.


#29

Again, my thanks to all who commented and helped me out. My blog on how did Type 1 Diabetes ever become defined as a childhood disease is now live! I welcome feedback, thanks, and I will certainly revise it if I get more information.


#30

I left this same comment on your blog.

Well done, Melitta. This is a myth that leads to harm. I only wish that there existed an effective tool to influence the collective mindset of clinical physicians. Traditionally it has taken time for doctors to age out of the system and replaced by younger doctors who don’t yet suffer from “hardening of the attitude.” Your evidence-loaded survey of the history of this topic hopefully will influence a few practitioners.


#31

Thanks, @Terry4! In addition to my blog, I do a lot of correspondence with various medical and diabetes entities, trying to get them to acknowledge the prevalence of adult-onset Type 1 diabetes, and see that misdiagnosis is a public health crisis. In recent years, I definitely have gotten more positive feedback–there is progress. But organizations such as AAFP (the family physician’s association) remain stubbornly in the dark ages. If a person gets diagnosed by their family practice doctor, there is a good chance that misdiagnosis will happen.


What is "Advanced Type 1 Diabetes?"
#32

Type 1 diabetes is a (mostly?) genetic disorder. Its an autoimmune disease where the body attacks and kills the beta cells on the pancreas. The more insulin the beta cells produce, the more they get attacked. Eventually killing them all off, faster than they can be replaced.

This usually shows up in childhood. I have heard of adults being diagnosed with sudden onset type 1.

Type 2 normally being called adult onset is because it normally takes a long time for it to happen. Decades. Its a response by the body to to much insulin production, creating insulin resistance. Creating a high blood sugar condition and the disease of diabetes.

I was diagnosed in Aug 2017 with T2D. My HBa1c was 11.7%, and a blood glucose reading of 594.

Terry4, you are completely right and wrong at the same time. Like a quantum particle. It was very difficult to deal with it for my first six weeks. I tried to follow the ADA’s diet advice given to me through the V.A. Hospital. For six weeks I couldnt get BG under control, let alone stay under 200. I took things into my own hands and decided to study everything I could about the cause of T2D.

I came to a conclusion in one day of research. Its a BG problem. Where does BG come from? Mostly from eating carbohydrates. Complex carbs or simple carbs, irrelevant. Carbs as fiber the only exception. We cant break fiber down to glucose.

Armed with this info I decided to see what happened if I ate ZERO carbs. I did it several years prior as a “body hack” to force my body to produce ketones for energy. I had heard it could help you lose fat, and feel better, and take care of several other diseases caused by sugars as well.

First, yes, its called the Keto diet. Second yes, it works. Third, I no longer have diabetes. Fourth, I plan to stay this way. I effectively cured my diabetes in less than 4 months. It was probably quicker than that, but my first follow up appointment was four months after diagnosis.

My BG is normally in the 80’s all the time. Even after a meal. I try to remain zero carb, but do occasionally eat something with a few grams of carbs in it, thus raising my BG into the low 100’s for as long as 1/2 an hour, before returning to the mid 80’s again.

The ketogenic way of eating is not difficult at all. I never feel hungry, EVER. I dont eat at a calorie deficit. I eat as much as I want, literally. Thats also usually just one meal a day. I just never feel the need to eat any other time. My body is completely fat adapted. I get 99% of my energy needs from fat in the form of ketones. The last tiny bit is from glucose for the few organs that require it. And that glucose is derived from fat as well, created by the liver for use by those organs that require it.

My endocrinologist has already stated that she doesnt need to see me anymore. I lost 40 pounds in the two weeks of eating Keto (carb free keto. I took it to the extreme, I could probably eat upwards of 50 grams of carbs a day, but why? I dont need that poison, so why eat it?)

To date, I have lost 58 pounds, all of that in the first 4 months. Since then, I have maintained my weight, eating from 1800 to 3,000 calories a day.

Yes, Keto was a little hard to grasp in the beginning. Eating 75% fat and 25% protein just seemed counter intuitive. But it works. Its not some youtube click bait video story. There is a lot of science behind it. Even Type 1 diabetics see massive results in eating this way. Most notably having such good control over BG as to lower their bolus to a small fraction. I seem to remember hearing some using about 10% or less than what they normally used.

I strongly urge anyone with diabetes to look into Keto as a way of life. I found a forum that answers pretty much any question about diabetes or keto. Its www.ketogenicforums.com The guys that started that forum have a podcast called “2KetoDudes” (which now has a dudette, lol). That podcast is full of invaluable information on diet and diabetes as well as eating keto.

Bob Johnson
Keto Vitae!


#33

Bob - congrats on your successful health intervention. I think carb limits are an often overlooked and underused tactic for controlling blood glucose with diabetes, both T2D and T1D.

I’m a little confused by your “completely right and wrong at the same time” comment. I am very much aligned with the treatment values you cite in your comment.

You may be interested in Dr. Eric Westman’s videos on this topic. He is a North Carolina university professor and clinician who specializes in treatments for T2D and obesity. He has had a lot of success using a carb-limited way of eating. A YouTube search can quickly reveal his work.

I’ve watched the 2KetoDudes videos before and enjoyed their presentations. The whole keto movement, unfortunately, is swimming upstream against the cultural bias about dietary fat, especially saturated fat.

Thanks for posting your story.


#34

Mine was the same way… got very sick. Went into DKA with BG 1141.


#35

What I was referring to was your comment about how difficult keeping T2D in control was. Both difficult to do, yet very easy to get rid of (for most of us, I suppose its possible for someone to be genetically incapable of being in nutritional ketosis.

As for Dr Eric Westman, I have been in touch with him. He works not far from where I live. I’m hoping to meet him one day soon.

The upstream swim is indeed a problem. But the more the word gets out, the more people actually look into the science behind keto, and falsehoods behind fat. Ask for the science on fat being bad, especially saturated fats, and you end up at the same place. Dr Keyes. In the 1950’s he did a study to prove fat was bad. He tried to use science to prove his opinion. Way wrong way to go. You use science to find out if its bad, not prove its bad. His own data countered what he thought, so he decided to leave out the data he didnt want to show. He admitted this sometime in the late 1990’s, maybe early 2000’s. He passed away sometime in 2009 I think. His data, though officially found flawed, is the defacto goto for studies on dietary fat.

If anyone says this diet is bad for you or helps with this thing, ask for the data. Where’s the peer reviews that show this. Always look at the science. While looking at it, see who paid for the study. If big tobacco pays for a study about smoking and lung cancer, what do you think the outcome of that study would be? Same as looking at studies about diets, if big agriculture (wheat, corn, et al) pays for a keto study, you can bet your bippie it will be a negative study. Goes the same in reverse, a steak company should be looked at closely as well for doing a study being pro keto. Preferably such studies need to be done from a neutral point of view.


#36

Hi @Bob_slayer_of_T2D : The point of my post–I am the OP–is that Type 1 diabetes is not a childhood disease, it is only a myth that it is a childhood disease. The earliest descriptions of Type 1 diabetes, thousands of years ago, were of adults, and the CDC etc say that most new-onset Type 1 diabetes occurs in adults. The myth that it is a childhood disease means that many if not most people with adult onset Type 1 are misdiagnosed as Type 2, as I was. Here is a blog that I wrote about the fact that new onset Type 1 most commonly is seen in adults, complete with references.


#37

Putting this here in @Melitta’s thread because I thought it might be of interest. It graphs the usage of the phrase “juvenile diabetes” from 1900-2000. Pretty interesting curve, with a steep drop-off starting in the early 80s, right around the time I was dx’d with “juvenile type”:

https://books.google.com/ngrams/graph?content=juvenile+diabetes&year_start=1800&year_end=2000&corpus=15&smoothing=3&share=&direct_url=t1%3B%2Cjuvenile%20diabetes%3B%2Cc0#t1%3B%2Cjuvenile%20diabetes%3B%2Cc0


#38

Hi @DrBB: Very interesting! Thanks for doing that, love your research!


#39

Thank you DrBB! I have amplified on your Google N-Gram point with important historical changes in terminology.

I myself was also diagnosed in the early 80’s where “Juvenile Diabetes” was the oldish phrase and “Insulin-Dependent Diabetes” was introduced to me as a new term. It wasn’t until the mid-80’s that my docs would call it “Type 1” (although they would also use the older terms too.)

The modern concept that Type 1 has to be differentiated through antibody testing or C-peptide testing, is completely foreign to me. In the 1980’s nobody was having antibody testing done and C-peptide testing was not a common diagnostic tool, it was completely an academic medical research thing.


#40

Just pulled up one of the links and found the article saying that type 1 in children was like an infection, quick and deadly. And I thank God everyday that I was diagnosed after the discovery of insulin not before!
And I have brought this thought up before about those diagnosed as a child and those as an adult and how it develops. Back in 1970, I did the “classic” description of type 1, insulin dependent, juvenile. One day I was perfectly healthy and in the matter of days went down hill quickly and did end up DKA and very close to death. It still to this day amazes me how quickly things happened.
And than as I meet more and more people with diabetes, I learned of many deign diagnosed as adults with much slower onset. I am not a medical professional but these two “types” of type 1 seem to be very different. And while diabetes of any type is basically the same treatment goals, keep blood sugars normal. I just think giving each and every one a different name is just making it so complicated.
While my type 1 is just like one with late onset in treatment standards, the getting to the diagnosis was oh so different.
And I also agree with many statements that children back in ancient or medieval times, just didn’t live very long, so diabetes didn’t come up much in kids. But diabetes did come up in adults back in that time frame. So question than is what type of diabetes in medieval times in adults?
One last thought. In 1970, the only people I knew who had diabetes were kids at camp and kids I meet through ADA events. I knew no one, no one who had diabetes in any of my schools, or neighborhood growing up. And now, I meet people all the time with diabetes. I just feel like there are more of us than back in the 70’s. Might be social media but these are people I just meet out and about town. Why so many now? Where was everyone in the 70’s? And if they were not around back than why so many now?
My very uneducated thoughts and a very difficult and challenging disease.


#41

That does seem to be common, but when adult-dx’ed people have weighed in on it here in the past it seems about 60/40, slow vs fast. So it’s far from absolute. I got it at age 28 and I went from fine to sick, heavily symptomatic and verging on DKA in about 3-4 weeks. For others it develops so slowly that they can go mis-diagnosed for a year, sometimes more.


#42

All very true. And the reality to me not knowing of people being diagnosed as type 1 as an adult when I was younger, was probably not happening. I mean we didn’t have all the tests we have now for a better diagnosis and outcome. I’m sure many of those type 2’s were probably type 1. Probably another reason the outcomes back than were so bad because people were not getting the right treatment plan.
But I think we will all agree, there are a heck of a lot more of us now! A very sad statement :slightly_frowning_face: