Hi everyone,
Sorry in advance for the long post. I am trying to find out if I am diabetic or not, and am curious as to what people think who have been on this rollercoaster ride themselves. This indeterminacy has been going on for me now for a year and a half. I have three people with T1D in my family, and they were all diagnosed in their late thirties (my age now). Around last March, I suddenly had a feeling like I couldn't digest the sugar in my meal. I felt like I had eaten five chocolate bars when it was only oatmeal. It felt like I was hungry but food wasn't feeding me. I was amped up and super thirsty. This was the exact feeling my brother said he had when he became diabetic. He kept eating and wound up with a big dramatic problem; I switched my diet to low carb, and the problem retreated... At least, at first. So, I forgot about it and started eating high carb again. And, I was getting slow healing cuts and stuff. Then several months later I had another 'crash' feeling and felt like I couldn't eat anything sugary. It was like I was a prisoner in my own diet.
I feel like this is likely diabetes but I haven't been able to get medical confirmation of it because, seeing as I switched my diet to low carb, my blood sugar is in the normal range. I ate one high carb meal in the last year, and my BS spiked to 12.7 (227) two hours after, and 11.5 (205) four hours after. But that's it. It's frustrating because, I am fairly certain I could do the OGTT and have confirmation of the problem in two hours, but I don't want to hurt my pancreas further just to get a diagnosis. 'First do no harm' is a principle that seems to be completely disregarded when it comes to the OGTT, at least for people with type 1.
So, I have had a bunch of other tests. My GAD and islet cell auto-antibodies are both negative. Which is fantastic. But, my insulin level is borderline low and fasting C-peptide was also very low amd into the range where they recommend starting insulin. My endo insists I am not diabetic based on these results, but I am not convinced. She said to increase my carbs by eating higher carb vegetables, and I was like ok I will, how about oatmeal? 'No! Not oatmeal!' Oatmeal is too high sugar, apparently. So I am like, why are you telling me not to eat oatmeal if you don't think I'm diabetic? Should I not be able to handle oatmeal in that case?
I feel like I am playing a game of Clue trying to figure out what my problem is. My Dr. basically admitted indirectly that, even if I had positive antibodies there isn't anything they could do to stop the progression of the disease, (if it's T1 - it's not likely to be T2), so there's no point worrying about it at this stage. In the meantime though, I am in the epistemic-diagnostic hinterlands and it's frustrating not knowing what's going on, and being told I am fine when I don't feel fine at all and I can't eat: bread, pasta, rice, quinoa, oats or potatoes, or particularly, carrots peas and corn. I think my endo intuitively suspects something may be wrong but she doesn't want to say because I might start bugging her for more tests. I don't want more tests, I just want a more straighforward sense of how likely it is that I have this problem. At this point all I have is sort of anecdotal signs, so I was wondering, I guess, if any of this experience rings a bell with anyone else as regards, what it was like for you around when you first started having problems, and if so if you have any thoughts or suggestions.
--
2) I am eating mostly meat and low carb vegetables, plus fats like avocado and hummus. I feel low energy and lethargic. I am wondering, is this likely to be my diet? Some people on this forum seem to suggest that once they started on insulin and went back to eating carbs, their energy improved. I am wondering if that is likely to be the case because a part of me wouldn't mind trying to get some, maybe, fast acting insulin and eat some bread, for example.
My endo is unlikely to prescribe this though when she is saying I am not diabetic.
--
3) My endo said something super encouraging about T1D. She said that it's not known whether a low carb diet can prevent the development of it. It is not believed to be the case, unlike in type 2 diabetes where a LC diet is clearly shown to reverse the problem. But it might be possible and they just don't know, they just don't have evidence. So, it's possible that my low carb diet is not only 'hiding' my problem or diagnosis, but it is actually interacting with it, in the sense of preventing it.
Also: Dr. Valter Longo has done research on how prolonged fasting can reverse T1D in mice. On one of his youtube videos, he states that prolonged fasting actually consumes autoimmune cells. It regenerates the pancreas on the one hand, through the activation of stem cells; but it also somehow affects (decreases) autoimmune cells. I find this super interesting as I have done a few prolonged fasts in the last year (actually, fasting mimicking diets using his protocol), and I found that my ability to tolerate sugar after each one improved slightly. Also, I am currently antibody-negative. A minority of people with LADA don't have the antibodies, but I am wondering if it is possible that my fasting has eliminated them. If so, that would be super amazing.
I basically don't feel sick or healthy. I feel in-between. It feels like my pancreas - or something - is not fully functioning in the way that it used to, but the problem has not got any worse in about a year, since I changed a bunch of things in my lifestyle. It has remained the same. If so, I wonder if it could be a rare situation - perhaps not so rare, but, it seems, unknown to the doctors, from their perspective - of managing & keeping at bay an early T1D, or what would otherwise develop into it - through lifestyle changes.
Before I changed certain things, my situation felt like it was deteriorating. Since then, I have been able to manage on my own without undue panic and discomfort. What I did, just in case anyone is interested:
--general disclaimer: this involves fasting. I think fasting is pretty dangerous and not recommended for people on insulin, outside of a supervised setting. Ditto for other diabetes drugs. I am not recommending it. I am not on any drugs, so I have been fasting without incident.
1) low carb diet. I eat a lot of low carb vegetables, plus meat and dairy, nuts etc
2) time restricted eating, following Dr. Satchin Panda's general protocol / advice. I eat for ten hours in the early part of the day, and fast for 14. This is because women reach autophagy faster than men, so our time restricted feeding does not have to be as restrictive for us in order to get the benefits. (Autophagy, or recycling damaged parts of cells in the body, including the pancreas, is a benefit of fasting.)
3) Occasional prolonged 'fasts' (fasting mimicking diet) of 2 to 3 days. I have got a lot of mileage out of these. When you come out of it at first, your blood sugar is more volatile rather than less, so it can seem like it had a negative effect initially, but after a few days the benefits become obvious
These are the main things, but I also take a multivitamin, Vitamin D (due to the research on autoimmune issues and vitamin D) and turmeric. I take some other herbs as well, but I don't feel it's appropriate to list them because they can alter the balance in the body in different ways and are not necessarily a good idea. I have found they work for me, but it's a trial and error type of thing.
I also started going to bed earlier. Apparently the circadian rhythm has a lot to do with health and various processes in the body, including autoimmunity. I feel a lot better having made this change.
--
Anyway, I just thought I would share my experience so far, the highs and the lows, in case anyone has any thoughts or finds any of it helpful. My goal is to keep the health that I have and hopefullly improve on it. It would be nice to get a better idea of where I stand with this problem, but it seems that that may not be forthcoming, and, it's not the main thing. 'My pancreas is walking with a limp' does not seem to be an idea that is very current in the medical diabetic community, which prefers 1 or 0, on or off, 'You have this' or 'you don't.' But it seems to me to best describe my current reality.
Thanks for reading x and if you have any thoughts or suggestions, please comment.
Sorry in advance for the long post. I am trying to find out if I am diabetic or not, and am curious as to what people think who have been on this rollercoaster ride themselves. This indeterminacy has been going on for me now for a year and a half. I have three people with T1D in my family, and they were all diagnosed in their late thirties (my age now). Around last March, I suddenly had a feeling like I couldn't digest the sugar in my meal. I felt like I had eaten five chocolate bars when it was only oatmeal. It felt like I was hungry but food wasn't feeding me. I was amped up and super thirsty. This was the exact feeling my brother said he had when he became diabetic. He kept eating and wound up with a big dramatic problem; I switched my diet to low carb, and the problem retreated... At least, at first. So, I forgot about it and started eating high carb again. And, I was getting slow healing cuts and stuff. Then several months later I had another 'crash' feeling and felt like I couldn't eat anything sugary. It was like I was a prisoner in my own diet.
I feel like this is likely diabetes but I haven't been able to get medical confirmation of it because, seeing as I switched my diet to low carb, my blood sugar is in the normal range. I ate one high carb meal in the last year, and my BS spiked to 12.7 (227) two hours after, and 11.5 (205) four hours after. But that's it. It's frustrating because, I am fairly certain I could do the OGTT and have confirmation of the problem in two hours, but I don't want to hurt my pancreas further just to get a diagnosis. 'First do no harm' is a principle that seems to be completely disregarded when it comes to the OGTT, at least for people with type 1.
So, I have had a bunch of other tests. My GAD and islet cell auto-antibodies are both negative. Which is fantastic. But, my insulin level is borderline low and fasting C-peptide was also very low amd into the range where they recommend starting insulin. My endo insists I am not diabetic based on these results, but I am not convinced. She said to increase my carbs by eating higher carb vegetables, and I was like ok I will, how about oatmeal? 'No! Not oatmeal!' Oatmeal is too high sugar, apparently. So I am like, why are you telling me not to eat oatmeal if you don't think I'm diabetic? Should I not be able to handle oatmeal in that case?
I feel like I am playing a game of Clue trying to figure out what my problem is. My Dr. basically admitted indirectly that, even if I had positive antibodies there isn't anything they could do to stop the progression of the disease, (if it's T1 - it's not likely to be T2), so there's no point worrying about it at this stage. In the meantime though, I am in the epistemic-diagnostic hinterlands and it's frustrating not knowing what's going on, and being told I am fine when I don't feel fine at all and I can't eat: bread, pasta, rice, quinoa, oats or potatoes, or particularly, carrots peas and corn. I think my endo intuitively suspects something may be wrong but she doesn't want to say because I might start bugging her for more tests. I don't want more tests, I just want a more straighforward sense of how likely it is that I have this problem. At this point all I have is sort of anecdotal signs, so I was wondering, I guess, if any of this experience rings a bell with anyone else as regards, what it was like for you around when you first started having problems, and if so if you have any thoughts or suggestions.
--
2) I am eating mostly meat and low carb vegetables, plus fats like avocado and hummus. I feel low energy and lethargic. I am wondering, is this likely to be my diet? Some people on this forum seem to suggest that once they started on insulin and went back to eating carbs, their energy improved. I am wondering if that is likely to be the case because a part of me wouldn't mind trying to get some, maybe, fast acting insulin and eat some bread, for example.
My endo is unlikely to prescribe this though when she is saying I am not diabetic.
--
3) My endo said something super encouraging about T1D. She said that it's not known whether a low carb diet can prevent the development of it. It is not believed to be the case, unlike in type 2 diabetes where a LC diet is clearly shown to reverse the problem. But it might be possible and they just don't know, they just don't have evidence. So, it's possible that my low carb diet is not only 'hiding' my problem or diagnosis, but it is actually interacting with it, in the sense of preventing it.
Also: Dr. Valter Longo has done research on how prolonged fasting can reverse T1D in mice. On one of his youtube videos, he states that prolonged fasting actually consumes autoimmune cells. It regenerates the pancreas on the one hand, through the activation of stem cells; but it also somehow affects (decreases) autoimmune cells. I find this super interesting as I have done a few prolonged fasts in the last year (actually, fasting mimicking diets using his protocol), and I found that my ability to tolerate sugar after each one improved slightly. Also, I am currently antibody-negative. A minority of people with LADA don't have the antibodies, but I am wondering if it is possible that my fasting has eliminated them. If so, that would be super amazing.
I basically don't feel sick or healthy. I feel in-between. It feels like my pancreas - or something - is not fully functioning in the way that it used to, but the problem has not got any worse in about a year, since I changed a bunch of things in my lifestyle. It has remained the same. If so, I wonder if it could be a rare situation - perhaps not so rare, but, it seems, unknown to the doctors, from their perspective - of managing & keeping at bay an early T1D, or what would otherwise develop into it - through lifestyle changes.
Before I changed certain things, my situation felt like it was deteriorating. Since then, I have been able to manage on my own without undue panic and discomfort. What I did, just in case anyone is interested:
--general disclaimer: this involves fasting. I think fasting is pretty dangerous and not recommended for people on insulin, outside of a supervised setting. Ditto for other diabetes drugs. I am not recommending it. I am not on any drugs, so I have been fasting without incident.
1) low carb diet. I eat a lot of low carb vegetables, plus meat and dairy, nuts etc
2) time restricted eating, following Dr. Satchin Panda's general protocol / advice. I eat for ten hours in the early part of the day, and fast for 14. This is because women reach autophagy faster than men, so our time restricted feeding does not have to be as restrictive for us in order to get the benefits. (Autophagy, or recycling damaged parts of cells in the body, including the pancreas, is a benefit of fasting.)
3) Occasional prolonged 'fasts' (fasting mimicking diet) of 2 to 3 days. I have got a lot of mileage out of these. When you come out of it at first, your blood sugar is more volatile rather than less, so it can seem like it had a negative effect initially, but after a few days the benefits become obvious
These are the main things, but I also take a multivitamin, Vitamin D (due to the research on autoimmune issues and vitamin D) and turmeric. I take some other herbs as well, but I don't feel it's appropriate to list them because they can alter the balance in the body in different ways and are not necessarily a good idea. I have found they work for me, but it's a trial and error type of thing.
I also started going to bed earlier. Apparently the circadian rhythm has a lot to do with health and various processes in the body, including autoimmunity. I feel a lot better having made this change.
--
Anyway, I just thought I would share my experience so far, the highs and the lows, in case anyone has any thoughts or finds any of it helpful. My goal is to keep the health that I have and hopefullly improve on it. It would be nice to get a better idea of where I stand with this problem, but it seems that that may not be forthcoming, and, it's not the main thing. 'My pancreas is walking with a limp' does not seem to be an idea that is very current in the medical diabetic community, which prefers 1 or 0, on or off, 'You have this' or 'you don't.' But it seems to me to best describe my current reality.
Thanks for reading x and if you have any thoughts or suggestions, please comment.
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