I was recently diagnosed with Type 1 diabetes based on a BG of ~8-900 upon ketoacidosis. My C-peptide is/was .17. However, I was tested for 5 different antibodies and was found to be negative for all of them.
Does this mean, theoretically, that my existing beta cells/stem cells could be harvested and grown then replaced for a cure?
There are plenty of people who test negative for known antibodies but the thing is that there are other antibodies that we just don’t have tests for. Stem cell research is still so new that unfortunately it often doesn’t work in practice, our bodies see the stem cells as invaders and kill them off just like your body killed off most of your beta cells. In addition as far as I know stem cell therapy requires immune-suppressant drugs which have severe side effects that I personally would be unwilling to endure.
Interesting thought, but I don’t know if it’s likely at this point…
Hi everyone, just an update.
I’m off insulin entirely with a fasting blood glucose of ~80. Fairly strict low-carb (<80 grams per day) and high values of about 110-120.
At this point, I think this is fairly useless information as it could be an unusually strong honeymoon period.
In any case, I will update again whenever I remember.
I saw a study that said any fasting blood glucose >110 was glucotoxic (rather than the >140 purported by the ADA) and another study that said people <30 years old were found to have some beta cell regeneration, so that was also motivation to keep strict control. It’s a dumb hope but I’ll hold onto it anyway.
Keep checking, daily, your fasting and before you go to bed and, well, before and after a moderate/high carb meal. You don’t want to lose all of the beta cells you currently have, so I’d go so far as to say, to do some basal testing, then carb testing too. Just keep a good handle of the blood glucose numbers too. I wish you all the best!
So it’s been a little over a year and a half now, I don’t know why I’m back but I am, so I want to give a little update in case there’s anyone out there scared or curious or for whatever reason identifies with what I went through.
I had a second C-peptide test done again maybe a year ago? Results came back with normal levels (up from essentially zero as I was told and saw). A1c is ~5-5.5 with no exogenous insulin. Which is absolutely mindboggling. I’m probably no longer a type 1 diabetic? I have to say it’s incredibly humbling.
To give you an idea about the type of personality I have; I love to read about things and gain as deep of an understanding about stuff as I can. When I was first diagnosed, all of the literature painted a rosy picture about a cure… but any implementation resulted in completely insignificant clinical effects. “5 years away” was the mantra (I actually broke down when I first read that due to my experience with, surprisingly, hairloss cures always being “5 years away” lol). Really there was only one tiny study that showed beta cells can regenerate if you are 1. young (under 30, which I am), and 2. keep blood glucose levels low (like really low always, <120). Keep in mind that I don’t/didn’t have markers for autoantibodies that would signal that my immune system was attacking my beta cells.
I tried. I couldn’t, at least not with my current (former) diet and lifestyle. The motivation to change actually came from my nurse, a thoroughly repulsive individual in every way, who acted condescending to me about my lifestyle despite weighing 350 pounds. I really did not like that, so I did the things I outlined in the original post. I also stopped all artificial sweeteners because I read that it messes with your gut biome, which could have metabolistic effects (though I don’t know if the amount we eat is significant enough to do so, indeed I kind of am skeptical but there was little downside to actually cutting them out so I did anyway).
There was a lot on my mind when I decided to write this, and I definitely forgot to write out some of my thoughts, but here it is. Ask questions and I will eventually get back to you on it.
Ah yes, I still test once per day, just in case.
When I was diagnosed 35 years ago, I was told a cure was probably 5 years away. I have waited seven times that length of time. Done waiting, just trying to play the hand I have been dealt.
Oh absolutely. I think if a person has never had experience with a chronic disease before (in my case of hairloss, you can find forum posts from 25 years ago saying cures are 5 years away lol), you can definitely get lured into a false sense of hope.
I just got incredibly lucky, and didn’t do anything to exacerbate my disease.
No antibodies, 350lbs, and you were able to come off insulin going on a low carb diet after you cleared your glucotoxicity? This sounds like classic type 2, which is most often Reversible
Probably misdiagnosed as type 1. No way type 1 is going away with weight loss, diet or any other mumbo jumbo.
Yup exactly
Sounds like T2, which is not so much reversible as sometimes controllable with lifestyle changes. My guess is if all those factors reverted, the diabetes would come back, indicating that it hasn’t been cured, but is rather under control. Probably can stop testing daily at some point and shift to longer time periods and regular A1c checks.
Reversible doesn’t mean cured. A type 2 off meds will always have to maintain diet and exercise protocol
I was not 350 pounds. I’m actually a former athlete, still lean ~12% bodyfat. The nurse was 350 pounds. I didn’t lose any weight except for the initial 4 month period before ketoacidosis. Also, my c-peptide level was .14
And I do keep a diet and exercise protocol. No way I’m ever risking flaring that up again.
I think I was type 1b diabetes or idiopathic diabetes, in case anyone needs a keyword search for that.
If it is type 1, over time it will get worse, The honeymoon period in a type 1/LADA can take 8 years plus to fully develop. I wasn’t even on insulin for 5 years. Going low carb just means you can get by with less insulin maybe for longer? They also know that people that have had diabetes a long time, some people, will still produce some insulin.
But since you didn’t have the antibodies, you have to wonder if something else was going on that wasn’t type 1, which could possibly be ideopathic diabetes or even something else. I guess time will tell on that one.
Good Luck to you. Keep doing what you are doing. Live day to day.