Type 1 Why have I insufficient privileges?

Billy Barroo · Nov 26, 2022

I screen shot posts every time I get silenced on these sites and groups for future reference.....and just to make clear to all. I did not say that I had reversed my diabetes type 1. I said I'm in remission NOT reversed, I'm still type one, this has been confirmed several times by my diabetic consultant and diabetic team since December 2019. Assuming/guessing I'm not a type 1 by someone who doesn't know me or my past medical history, not like my diabetic team does is ridiculous. This information is and has been censored for decades and it needs nipping in the bud' There's loads of type ones in remission all around the world. Folk need to start doing more of their own homework before they misinform folk by stating type 1 diabetics can not go into remission. THEY CAN AND THEY DO. Me and many others are living proof of that.

Billy Barroo · Nov 26, 2022

Fast forward to the 1 hour 16 minute mark and listen to what Dr. Zsófia Clemens, a neurobiologist and clinical researcher specialising in nutrition, nutritional therapy and brain research has to say about putting type 1 diabetes into remission. They're still trying to cover it up.

https://www.youtube.com/watch?v=mh5jvXuzxqY

zand · Nov 26, 2022

Classic T1 is an auto immune disease. The body stops the pancreas from working. To my mind the only way to be in remission is to stop the body from killing off its own insulin producing cells. Even if someone had zero carbs, their BGs would still be sky high due to liver dump and they would need to use insulin to bring them down.

I have heard of one person in the news in the last couple of years whose body appeared to heal itself in this way, but I haven't heard how or why this worked. But if this happens then surely low carb wouldn't be necessary at all?

We have had people here who were LADA and managed their diabetes for years without insulin, but that's not the same as T1 remission.

I read some of the work from this lady, but it appears to be mostly about slowing down the progress of T1 in children, which is great and it's well known that a keto/ carnivore diet can help. Surely they are still T1 though?

The info I read was talking about the possibility of beta cell transplants if they could stop the body killing off its own cells. I couldn't find where it said this had actually been done though.

It's interesting and is definitely progress but i think the real danger in this message is potentially of false hope.

Billy Barroo · Nov 26, 2022

zand said:
Classic T1 is an auto immune disease. The body stops the pancreas from working. To my mind the only way to be in remission is to stop the body from killing off its own insulin producing cells. Even if someone had zero carbs, their BGs would still be sky high due to liver dump and they would need to use insulin to bring them down.

I have heard of one person in the news in the last couple of years whose body appeared to heal itself in this way, but I haven't heard how or why this worked. But if this happens then surely low carb wouldn't be necessary at all?

We have had people here who were LADA and managed their diabetes for years without insulin, but that's not the same as T1 remission.

I read some of the work from this lady, but it appears to be mostly about slowing down the progress of T1 in children, which is great and it's well known that a keto/ carnivore diet can help. Surely they are still T1 though?

The info I read was talking about the possibility of beta cell transplants if they could stop the body killing off its own cells. I couldn't find where it said this had actually been done though.

It's interesting and is definitely progress but i think the real danger in this message is potentially of false hope.

I'm still type 1, but I've been in REMISSION since the 26th July 2021, I haven't reversed it, I'm in remission, which I seem to keep on having to repeat. I'm type 1 in remission NOT type 2 Honeymoon period or not., My HbA1c from 21.9% down to 5.3%

zand · Nov 26, 2022

Billy Barroo said:
I'm still type 1, but I've been in REMISSION since the 26th July 2021, I haven't reversed it, I'm in remission, which I seem to keep on having to repeat. I'm type 1 in remission NOT type 2 Honeymoon period or not., My HbA1c from 21.9% down to 5.3%

As I understand it, that's not unusual in older folk as the progress of the disease can be slower in older people. I remember reading about one guy here doing that about 10 years ago. He eventually needed insulin though.

Well done on your remission so far.

Margot Elizabeth · Nov 26, 2022

zand said:
As I understand it, that's not unusual in older folk as the progress of the disease can be slower in older people. I remember reading about one guy here doing that about 10 years ago. He eventually needed insulin though.

Well done on your remission so far.

Zand, that is surely in type 2? Typically as type 1s age, the disease becomes more difficult to control. Women have the advantage of menopause, helpful, but other issues around nerve damage, developing other autoimmune disorders (MS, thyroid disorders, RA, etc.), complications, and aging tend to result in less stable blood sugars.

There is a drug that's just been approved in the US that supports newly diagnosed type 1s in protecting their remaining beta cells by affecting the T cell system, although apparently the mechanism through which it does this isn't understood entirely. Anyway, it's called Teplizumab, sold under the name Tzield. There's no evidence so far that the effects last beyond a few years, nor that it will be effective for people who have been type 1 for many years. We tend not to have islet cells left.

Rokaab · Nov 26, 2022

Margot Elizabeth said:
Zand, that is surely in type 2? Typically as type 1s age, the disease becomes more difficult to control. Women have the advantage of menopause, helpful, but other issues around nerve damage, developing other autoimmune disorders (MS, thyroid disorders, RA, etc.), complications, and aging tend to result in less stable blood sugars.

I believe its more the fact that if you get T1 much later in life then it can take somewhat longer for all your beta cells to be destroyed therefore you can have a much much longer honeymoon period in comparison to a much younger person

Margot Elizabeth · Nov 26, 2022

Rokaab said:
I believe its more the fact that if you get T1 much later in life then it can take somewhat longer for all your beta cells to be destroyed therefore you can have a much much longer honeymoon period in comparison to a much younger person

I see your point. When I was diagnosed fifty years ago adult onset type 1 was almost unheard of! : )

Friends with type 1 are dying in their 40s and 50s of complications, seizures, overnight lows etc., so I'm a tad sensitive about the suggestion that somehow it's easier as one ages. Of course, fifty years ago there was no way to measure blood glucose outside of a useless trip to the hospital, so I'm hopeful that people who have been diagnosed since the advent of all the amazing technology we have now will have an easier time.

zand · Nov 26, 2022

Margot Elizabeth said:
Zand, that is surely in type 2? Typically as type 1s age, the disease becomes more difficult to control. Women have the advantage of menopause, helpful, but other issues around nerve damage, developing other autoimmune disorders (MS, thyroid disorders, RA, etc.), complications, and aging tend to result in less stable blood sugars.

There is a drug that's just been approved in the US that supports newly diagnosed type 1s in protecting their remaining beta cells by affecting the T cell system, although apparently the mechanism through which it does this isn't understood entirely. Anyway, it's called Teplizumab, sold under the name Tzield. There's no evidence so far that the effects last beyond a few years, nor that it will be effective for people who have been type 1 for many years. We tend not to have islet

I believe the OP was diagnosed last year, aged 72. Whatever his diagnosis, he must still be producing insulin, otherwise simply eating carnivore would not be enough to control his BGs.

Robbity · Nov 26, 2022

From information gleaned while learning a little about diabetes from my Google wanderings:
In the pre-insulin era, carbohydrate and calorie restriction in the form of “starvation diets” were the most advanced treatment for T1D.
So it seems that it is possible to survive (if only for a limited time) without insulin.

There's also the more recent and widely reported case of Daniel Darkes who managed to come off insulin 6 or so years back. Our main Diabetes.co.uk site reported on this, and the man himself was a member of our forum for a short time, I believe it was suggested by by a USA medic? that he had some rare gene.

Billy Barroo · Nov 26, 2022

zand said:
I believe the OP was diagnosed last year, aged 72. Whatever his diagnosis, he must still be producing insulin, otherwise simply eating carnivore would not be enough to control his BGs.

I was diagnosed tYPE 1 on the 29th DEC 2019 at the age of 70. I am still producing insulin and my last blood glucose reading 30 minutes ago was 5.1, mmol/L, more than enough to to control my BGs.

Insulin 'still produced' in most people with type 1 diabetes

New technology has enabled scientists to prove that most people with type 1 diabetes have active beta cells, the specialized insulin-making cells found in the pancreas. Type 1 diabetes occurs when the body's immune system destroys the cells making insulin, the substance that enables glucose in...

www.sciencedaily.com

Billy Barroo · Nov 26, 2022

Has Dr Csaba Toth and Zsofia Clemens lost their privileges for spreading this information Diabetes.co.uk?

Ostracised by the medical community, Dr Csaba Tóth insists the paleo keto diet is a groundbreaking diabetes treatment - Diabetes

“We can’t deny the paleolithic ketogenic diet and we can’t deny scientific fact.” – Dr Csaba Tóth. Hungarian physician Dr Csaba Tóth has been ostracised by the medical community. His research into the paleolithic ketogenic diet as a diabetes treatment is controversial in some circles. But his...

www.diabetes.co.uk

zand · Nov 26, 2022

I don't understand what you mean by 'lost privileges' or 'insufficient privileges'.

HSSS · Nov 26, 2022

What, in your mind, is the difference between remission and reversal?

To me (and widely in diabetes literature) they mean the same thing - normal levels achieved without medication. Exact levels required do vary a little, as does time span required. Neither mean cured. Both are forms of management but by non medical means and cessation of the management will mean a return of symptom.

You‘ve still not answered questions about HOW you were diagnosed ie by what tests etc.

Nor do you seem to accept in some case mistakes are made by drs in their diagnosis nor that the type 1 honeymoon can last years in adults-especially in those eating very few carbs (ie the remaining low insulin can cope so long as demand is kept low enough as in a Carnivore diet).

Whether either situation applies to you personally is speculation but not ridiculous or conspiracy etc and disagreement or sceptism is not censorship as we’ve seen both scenarios before in here and is just as, if not more, likely than confirmed type 1 being in remission long term without insulin. You may not agree with us.

Jaylee · Nov 26, 2022

Hi @Billy Barroo ,

In order to understand the community on this forum as well as your own diabetes. You should be mindful of respectful debate.
We got a shed load of forum ethos rules covering all bases. Here. https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/

You actually do yourself a disservice, as I for one attempt to genuinely understand your personal position regarding your posts.
We can only go on your personal posts documenting your diabetes.
As a T1 myself. I adopt a low carb approach some days pretty much carni.. But I still need insulin regarding the glucogenesis aspect with protein. Please don’t try to convince me I can drop exogenous insulin.. I’ve tried, with near disastrous results..

Your screenshot of the definition of “remission” actually is referring to “type twos.” From here.. https://www.diabetes.org.uk/guide-t...eating-your-diabetes/type2-diabetes-remission

Kind regards,

Jaylee,

Billy Barroo · Nov 26, 2022

Jaylee said:
Hi @Billy Barroo ,

In order to understand the community on this forum as well as your own diabetes. You should be mindful of respectful debate.
We got a shed load of forum ethos rules covering all bases. Here. https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/

You actually do yourself a disservice, as I for one attempt to genuinely understand your personal position regarding your posts.
We can only go on your personal posts documenting your diabetes.
As a T1 myself. I adopt a low carb approach some days pretty much carni.. But I still need insulin regarding the glucogenesis aspect with protein. Please don’t try to convince me I can drop exogenous insulin.. I’ve tried, with near disastrous results..

Your screenshot of the definition of “remission” actually is referring to “type twos.” From here.. https://www.diabetes.org.uk/guide-t...eating-your-diabetes/type2-diabetes-remission

Kind regards,

Jaylee,

I'm not trying to convince you or anyone else. I'm just telling my own personal success story and passing on the information and sources that helped me come off injecting insulin. If I increased my protein intake, then I too would have to start injecting insulin again, Like I've said all along, I'm still a type 1 diabetic. I couldn't have done it without the help of the strict Paleolithic Ketogenic Diet. (The carnivore version) I personally couldn't stop my insulin injections on a low carb, Keto diet. I've already tried that.......and I can't have any cheat days on the diet I'm on now either. The point of the type two remission post was simply to point out that I'm type 1, not type 2 and that my HbA1c puts me in the complete remission zone. 5.3%

Billy Barroo · Nov 26, 2022

zand said:
I don't understand what you mean by 'lost privileges' or 'insufficient privileges'.

I've been accused of giving out misinformation.....Which I haven't. They don't want this information getting out,

Billy Barroo · Nov 27, 2022

HSSS said:
What, in your mind, is the difference between remission and reversal?

To me (and widely in diabetes literature) they mean the same thing - normal levels achieved without medication. Exact levels required do vary a little, as does time span required. Neither mean cured. Both are forms of management but by non medical means and cessation of the management will mean a return of symptom.

You‘ve still not answered questions about HOW you were diagnosed ie by what tests etc.

Nor do you seem to accept in some case mistakes are made by drs in their diagnosis nor that the type 1 honeymoon can last years in adults-especially in those eating very few carbs (ie the remaining low insulin can cope so long as demand is kept low enough as in a Carnivore diet).

Whether either situation applies to you personally is speculation but not ridiculous or conspiracy etc and disagreement or sceptism is not censorship as we’ve seen both scenarios before in here and is just as, if not more, likely than confirmed type 1 being in remission long term without insulin. You may not agree with us.

It's censorship when I can not reply to posts

Billy Barroo · Nov 27, 2022

HSSS said:
What, in your mind, is the difference between remission and reversal?

To me (and widely in diabetes literature) they mean the same thing - normal levels achieved without medication. Exact levels required do vary a little, as does time span required. Neither mean cured. Both are forms of management but by non medical means and cessation of the management will mean a return of symptom.

You‘ve still not answered questions about HOW you were diagnosed ie by what tests etc.

Nor do you seem to accept in some case mistakes are made by drs in their diagnosis nor that the type 1 honeymoon can last years in adults-especially in those eating very few carbs (ie the remaining low insulin can cope so long as demand is kept low enough as in a Carnivore diet).

Whether either situation applies to you personally is speculation but not ridiculous or conspiracy etc and disagreement or sceptism is not censorship as we’ve seen both scenarios before in here and is just as, if not more, likely than confirmed type 1 being in remission long term without insulin. You may not agree with us.

Read my last thread "Are there any type 1 diabetics here in remission?" I answered how I was diagnosed on there. C-peptide results, every 3 monthly HbA1c results. blood tests etc. Whether it's the honeymoon period or not I'm still in remission. I think my diabetic team, to this day say I'm still type 1 know more about my case than some random sceptics. I've never mentioned a cure or that I've reversed it ever. I said I'm in remission. There is a big difference. Reversal and cure, in my mind means I can eat anything I want. Remission to me means that I need to keep on the strict diet that I'm already on, controlling it through diet alone and to keep my HbA1c below the 6.5% range. If I go back to low carbs, even small amounts, I'll be back to square one injecting insulin.

Riva_Roxaban · Nov 27, 2022

Billy Barroo said:
It's censorship when I can not reply to posts

Whole threads have been have been closed to forum members with the Insufficient Privileges reason because the forum rules, ethos etc have been breached. It's happened to me on several occasions.

It seems to me that you do not think this applies to you, and you should be exempt from the forum t&c's. Not gunna happen mate...

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