Documentary on Type 1 diabetes

Dr. Bernstein’s treatment with the very low carb diet has been saving my life and preventing complications for years.

What level of per-day carbs do you use?

Just to make sure people know, not everyone desires or needs to low carb. I don’t and I have excellent control with no complications. My last A1c was 4.9% and a TIR of 96% between 65-160.

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What do you do (for carbs?)

I followed Dr. Bernstein for 11 yrs and ate no more that 30 carbs a day during that time.

I was very ill before I was smart enough to leave that way of eating far behind. While it works beautifully for Dr Bernstein, it doesn’t work well if you have high LDL or arteriosclerosis. I ended up with two heart stents. I also was suffering with bad migraines and was also passing out with sudden bouts of low blood pressure. When I fell I would hit my head and that required an ambulance more than once.

Once I started a mostly vegan low fat diet, I got better. I eat lots of vegetables including potatoes, fruits, legumes and grains. No more headaches and I stopped passing out. My LDL is much much lower now. I have been eating this way for 6 yrs now.

Except for the stents, I am doing very well after 63 yrs of type 1.

I would never go back to eating so much fat.

Oh yes, my last A1c was 4.6 while eating 260 healthy carbs daily, I am usually in range over 93 percent of the time, and I rarely rollercoaster.

I take 10 units of Tresiba and 7 to 10 units of Novolog. I don’t make any of my own insulin. Lately I have been taking less Novolog and replacing it with Afreeza.

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@John_Bowler What do you mean what do I do for carbs? I eat whatever I want whether it’s 10 carbs or 120 carbs at a meal. As long as it’s vegan. I just dose properly for it. Timing for me is a key to good control.

PS Besides a CGM, a pump and being retired all helping!

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I did not do well with that diet, I had even more lows than now and I was literally starving. Too low carbs for me put me almost in dka and in the hospital also but after I stopped that diet. that’s another story.

I still eat lower carb maybe 120 - 150 a day. But I still feel like I am starving a lot, it is the insulin. Lots of foods I can no longer eat. Grains, starchy veggies etc. bg will be 250 stat no matter what I do.

I was vegetarian and then vegan before dka at diagnosis and I believe it brought on type 1 now, among other factors. I would never do it again, it was very unhealthy for me.

@meee Being a vegan or vegetarian has nothing to do with getting type 1. Ways of eating doesn’t play a part in it. The strongest belief is you inherited a gene or combo of genes that gives you the ability to get it. Then a virus(es) starts activating the process. Sars and covid seem to be causing it, but there is also research that the enteroviruses might have a link, and the vaccine for the rotavirus for infants cut down on how many ended up developing type 1.

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Can you link more info on this?

@MM1

I mean how much do you eat on average per day; you say you don’t do low carb, but that begs the question of what low carb is. This is why I asked both you and @AlexK; saying, “low carb” doesn’t mean anything. Last week I examined an ostensibly keto diet publication on the checkout at WinCo and I know I wouldn’t be in ketosis (well, I might have a running chance at DKA) if I ate what was on the front cover; I know I only start to show ketosis below 100g/day.

So for me “low carb” is below 50g/day and “high carb” starts at 120g/day, but other people quote “low carb” as below 20g/day (that would give me a really nasty headache and BG ketones of well over 2mM!)

So my question stands; what’s you level of average per day carb intake, or, for that matter, your lower limit?

Thanks! Will pass info on to my niece, with young infant.

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@John_Bowler I actually don’t follow a limit per se, lower or higher, but I do have a tendency to be around 120 carbs a day as an average. I don’t really eat a lot. I have a bad back so I am not super active, although I do make sure to ride my exercise bike 10 miles every day (except when my back is completely haywire) and I swim off and on. I don’t really care if it’s 0 or 200, for a day. A pattern for me is too many days over 120 and I will gain weight because I am eating too much for days in a row.

So far I’ve eaten 110 carbs…and I will be eating something from 4 carbs plus this early evening with some vitamins, it just depends whether I grab 2 crackers, pineapple or a piece of FFL raisin bread or?

With respect you don’t know if it had anything to do with me getting type one. I believe it did play a role for “me” and I would never do it again. Many people have become very ill after being vegan especially and have almost died, so it is not hard to fathom it could also play a role. For me, I felt sick being vegetarian and especially vegan, and type one dka happened not long after all of that. I also had a reactivation of ebv while on that diet. So being vegetarian and vegan was very bad for me personally. There are many videos posted by former vegans on yt who became ill and some who nearly died on that diet, it is not healthy for everyone. People need to respect that just as Bernstein’s diet is not healthy for everyone either. I was also taking the appropriate recommended vitamins and so were these people so it was nothing to do with that.

Truth be told no one really knows for sure why each person who ends up getting type one gets it. I am well aware of the viral theories and I have researched them. Viral triggers are one factor but there are others including stress, injuries etc. as well as hereditary factors that play a role. Stress and viruses in the intestines can be caused or aggravated by a diet which is not healthy for an individual as well. The key words in one of the studies linked and I imagine in the others as well are “ seems to ““may be…” etc. So in other words infants, children and also adults should get those vaccines imo but that sadly that does not guarantee they won’t get type one.

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That’s very close to what I was doing until recently and, like you, my carb intake is quite variable, definitely not Bernstein :slight_smile:

However I have always described this as a low carb diet because it really is low compared to the other people around me; I have a much, much lower carb intake, maybe by at least a factor of 2 than other people with similar exercise levels.

I do eat a similar or larger volume of food compared to most people but most of my carbs come from leaf vegetables and fruit (I’m definitely not Bernstein in that respect either.) These days I eat hardly any starchy stuff; the odd bit of flour as a result of my wife’s inclination to fry chicken and pork with a light flour coating.

I also count protein in that 120g, following Bernstein in this respect. Since I have a high protein diet this accounts for a lot of the carbs I eat, maybe 1/3 to 1/2.

So there’s context here; I seem to need about 100g of net carbs from carb+protein+fat to avoid ketosis and to maintain body weight. Above that I don’t put on weight but control gets substantially more difficult. So I can describe 100g as “medium”, but only on this list; for everyone who is not a T1D or keto it is low.

I also know from experience that my food requirement goes up massively with continuous exercise and that this applies to everyone. People working in lumber yards, logging, on fire crews when there is a fire and so on have to eat comparatively massive amounts of food.

So using absolute measurements of carb content has problems; it only applies to those of us who are either sedentary, which I have never been (I walked to school, I cycled to work etc) or have small but consistent amounts of exercise (like me; currently 1/2mile+300ft of ascent/day, maybe 200m swimming, and walking/moving around the rest of the time). Other people need to eat what their body demands to cover the exercise.

John, do you consider my 260 carbs low?

That strikes me as on the low side of average, but it’s actually close to the average American woman’s consumption; men consume significantly more (300), but men also have higher average body weight… Nevertheless the figures I can find all hover around that level.

These figures are fundamentally affected by body size (not necessarily weight) and exercise level; the average includes figures for 6’ high female weightlifters, as well as women who shift boxes in Walmart, which probably takes more energy.

That number would certainly be high for me; I’m active but not continuously active, I am 190cm/6’3" high and about 80kg/180#.

The number, and my use of “low” and “high” here is also with respect to the majority of the population who are not fully developed T1Ds. The carb intake is 50% of their energy intake; for me it’s probably closer to 20-30% of my energy intake. I have consumed that level of carbs and probably did much more in my youth but my control was really terrible.

The use of absolute values is one of the problems with Bernstein; he writes down these 6+12+12g numbers but they are for a 140# fully developed T1D with unspecified exercise levels and it is not clear whether he counts protein in those numbers, I suspect not.

I am 5’ 107 lbs.

Ah yes, but do you shift boxes in WalMart, or go on marathon bike rides, or do what my wife does which is spend a few hours every day working in the garden pulling out weeds, hoeing, digging out old plants digging in new ones?

The average American women (by one report) is 5’4" and 170# (healtline.com). Those numbers are from the CDC for 2015-2016, but I don’t think weight is very important for this discussion; rather it is race(sub-species)+sex+height+excercise because that determines what our weight will end up as if we are well nourished.

So height is traditionally done with BMI which is known to have problems for both shorter people and taller people. The modified BMI is said to be better. Using that to find a middle weight for us:

Feet Inches m BMI kg #
6 3 1.91 21.75 84 185
5 0 1.52 21.75 48 106

The point of that is not to prove we are on target (though to my surprise the modified BMI is doing much better for me; the old one always had me overweight). Rather the point is to work out what our carb requirement “should” be based on an expected weight for our height.

So then I took that weight, my age (62) and height and entered it into this calculator:

Selecting “maintenance” and “moderately active”. It came up with 252g/day for me but if I swapped by sex/height/target weight to your figures it responded with 168g/day. The page is broken; it has to be refreshed each time before entering new numbers.

Alternatively this page:

Gives me a carb range of 281-374g but with your height/weight gives 173-231g, this is with “moderate” excercise.

So the numbers are all sort of around the same values with a maybe +/-50% variation, but, of course, these are numbers for non-T1s and almost certainly assume a much higher % carb intake than I have.

Both those pages allow experiments with changing the exercise level. The first page takes me to 300g/day with “Extra active (Hard exercise/sports 6-7 days a week, plus physical job)”, changes on the second are significantly smaller. The exercise level changes probably translate a lot better to me because the exercise burns the same calories for all of us and tends to make me much more insulin sensitive; not just during the exercise but for one or two days afterward too.

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So I am eating quite a few carbs for my small size. I ride the exercise bike for 1/2 hr after breakfast, and I try to do some walking and other exercises throughout the day.
I am 71 and have been a type 1 since I was 8.