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Type 1 Why have I insufficient privileges?

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Billy Barroo said:
I've been accused of giving out misinformation.....Which I haven't. They don't want this information getting out,
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Your screenshot originates from a topic regarding the inconsistencies of a Dexcom sensor asked by a father with a T1 child..

Newly diagnosed 3 year old with diabetes type 1

Hi, My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings. Its been 3 hours and the readings are...
www.diabetes.co.uk www.diabetes.co.uk

So I’m not quite following the the logic on this thread regarding your personal grievance..
 
Billy Barroo said:
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.
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I'm interested in this as I know of someone, who claims to have recently been diagnosed with type 1 diabetes, I guess they are in their fifties. Not the sort of person to make false claims. They say they are not on any meds or insulin. I always thought from reading medical info that people with type 1 produce no insulin, so would die if they weren't given this. Has this changed for some reason? The person in question eats extremely low carbs I believe.
 
onnecar said:
I'm interested in this as I know of someone, who claims to have recently been diagnosed with type 1 diabetes, I guess they are in their fifties. Not the sort of person to make false claims. They say they are not on any meds or insulin. I always thought from reading medical info that people with type 1 produce no insulin, so would die if they weren't given this. Has this changed for some reason? The person in question eats extremely low carbs I believe.
Click to expand...
Again, this is a person who was diagnosed later in life, so the disease progression is likely to be slower than in a child for example. The fact that they eat extremely low carbs is relevant and is no doubt helping the pancreas by needing it to produce less insulin.

For me, as a diet controlled T2, the level of carbs I have varies from 50-100g generally. I would not want to go lower than that for any great length of time as I don't enjoy very low carb eating. My bowel doesn't like it either. We need to remember we are complex beings, not just diabetics. Other health conditions come into play too.

For me, when the time comes that 50g carbs is too high for my body to cope without insulin, I will choose insulin over making my life miserable by trying to exist on a strict diet that neither me or my body likes.

I think the idea that T1s always need insulin right away came from a time where T1s were nearly always diagnosed as children or young adults and where diagnosis was made at an urgent, life threatening stage.

Many on here have talked about the T1 honeymoon phase which can give some grace period allowing a person to have lower exogenous insulin needs, but it isn't always helpful as the pancreas isn't always consistent in its output of insulin. So in these cases low carb can help level out some of the inconsistencies.
 
Jaylee said:
Your screenshot originates from a topic regarding the inconsistencies of a Dexcom sensor asked by a father with a T1 child..

Newly diagnosed 3 year old with diabetes type 1

Hi, My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings. Its been 3 hours and the readings are...
www.diabetes.co.uk www.diabetes.co.uk

So I’m not quite following the the logic on this thread regarding your personal grievance..
Click to expand...
Can you please tell me how did you came to the conclusion that I was giving out misinformation? Those links are genuine and my own personal type 1 diabetes story is genuine.
 
Billy Barroo said:
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.
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Billy Barroo said:
Can you please tell me how did you came to the conclusion that I was giving out misinformation
Click to expand...

Hba1c tests do not diagnose type, just levels over the last few months. A single normalish c peptide test doesn’t confirm type either. And it’s what other blood tests you’ve had we keep asking for, specifically any antibody tests. Type 1 honeymoon is not the same as remission. Remission is not a term used about type 1, only type 2.

We may not be drs but as a group we are well informed about the tests and language and practices extensively used by drs.

We are saying you are making medically confusing explanations for your situation and as a result you are giving false hope to at least two members that I have seen comment and who knows how many that have just read it not posted. Yes you have found an extreme way to manage your situation for right now (regardless of accuracy of diagnosis or terminology used to describe the situation) which is great for you and can be shared but please take care to use reliable explanations.
 
onnecar said:
I'm interested in this as I know of someone, who claims to have recently been diagnosed with type 1 diabetes, I guess they are in their fifties. Not the sort of person to make false claims. They say they are not on any meds or insulin. I always thought from reading medical info that people with type 1 produce no insulin, so would die if they weren't given this. Has this changed for some reason? The person in question eats extremely low carbs I believe.
Click to expand...
No it hasn't changed, it's just that a lot of people have been misinformed over the years. I'm 73 and I'm also not the sort of person to make false claims. I can post some links from decades ago prooving that it hasn't changed but is it worth I ask, seeing how much negativiy there is on this subject.
 
zand said:
Again, this is a person who was diagnosed later in life, so the disease progression is likely to be slower than in a child for example. The fact that they eat extremely low carbs is relevant and is no doubt helping the pancreas by needing it to produce less insulin.

For me, as a diet controlled T2, the level of carbs I have varies from 50-100g generally. I would not want to go lower than that for any great length of time as I don't enjoy very low carb eating. My bowel doesn't like it either. We need to remember we are complex beings, not just diabetics. Other health conditions come into play too.

For me, when the time comes that 50g carbs is too high for my body to cope without insulin, I will choose insulin over making my life miserable by trying to exist on a strict diet that neither me or my body likes.

I think the idea that T1s always need insulin right away came from a time where T1s were nearly always diagnosed as children or young adults and where diagnosis was made at an urgent, life threatening stage.

Many on here have talked about the T1 honeymoon phase which can give some grace period allowing a person to have lower exogenous insulin needs, but it isn't always helpful as the pancreas isn't always consistent in its output of insulin. So in these cases low carb can help level out some of the inconsistencies.
Click to expand...
zand said:
Again, this is a person who was diagnosed later in life, so the disease progression is likely to be slower than in a child for example. The fact that they eat extremely low carbs is relevant and is no doubt helping the pancreas by needing it to produce less insulin.

For me, as a diet controlled T2, the level of carbs I have varies from 50-100g generally. I would not want to go lower than that for any great length of time as I don't enjoy very low carb eating. My bowel doesn't like it either. We need to remember we are complex beings, not just diabetics. Other health conditions come into play too.

For me, when the time comes that 50g carbs is too high for my body to cope without insulin, I will choose insulin over making my life miserable by trying to exist on a strict diet that neither me or my body likes.

I think the idea that T1s always need insulin right away came from a time where T1s were nearly always diagnosed as children or young adults and where diagnosis was made at an urgent, life threatening stage.

Many on here have talked about the T1 honeymoon phase which can give some grace period allowing a person to have lower exogenous insulin needs, but it isn't always helpful as the pancreas isn't always consistent in its output of insulin. So in these cases low carb can help level out some of the inconsistencies.
Click to expand...
Thanks Zand. That explains a lot. I agree with absolutely everything you say. I'm 70 now and recently had to start taking insulin as whatever I did would not lower bg enough. Also don't tolerate some meds. Also want a life. I've always eaten low carbs and not overweight. It is unfortunately a progressive disease and I also have other health issues to consider. The info about type 1, should be made clearer I believe. Also expectations of type 2 progression, and the myth that overeating necessarily gives you diabetes. I still feel media information only centres on a few facts. There are also a lot of assumptions made, such as, if you've not succeeded in lowering bg then it must be because you are not eating low carbs. It's about treating the whole body.
 
Billy Barroo said:
No it hasn't changed, it's just that a lot of people have been misinformed over the years. I'm 73 and I'm also not the sort of person to make false claims. I can post some links from decades ago prooving that it hasn't changed but is it worth I ask, seeing how much negativiy there is on this subject.
Click to expand...
The negativity is about the way you are choosing to explain possibly diminishing but not yet entirely absent insulin production (ie a honeymoon, not remission) and it’s management - not that you are doing it successfully for you which is fine. That, and failing to address the possibility of misdiagnosis, as yours is apparently based on DKA alone, by ignoring discussions on that topic.

@onnecar For clarity, type 1 will die without insulin once their need for it outstrips their diminishing ability to produce it themselves. This is and always was true. It is possible to reduce need as this poster has done with diet, and it is possible for production to exist on low levels for even several years (called a honeymoon). These can delay the absolute need for insulin. It is the recognition that total cessation of insulin production can be slow and take years that has been recognised more recently. In the past it was widely assumed it was only children that got type 1 and adults got type 2, sometimes quickly sometimes slowly. There’s even a name sometimes used for slow onset adult type 1 - LADA.
 
Billy Barroo said:
No it hasn't changed, it's just that a lot of people have been misinformed over the years. I'm 73 and I'm also not the sort of person to make false claims. I can post some links from decades ago prooving that it hasn't changed but is it worth I ask, seeing how much negativiy there is on this subject.
Click to expand...
Believe me, the negativity from some of us comes from a good place! We want to give realistic hope, not false hope, and certainly not dangerous hope.

In the case of a parent with a newly diagnosed child, for example, obviously they would want their child to be able to get remission from T1 if it was possible, but what if it's not?

To explain where I'm coming from on this...

My first born was born prematurely. He developed asthma at 7 months old. He needed a nebuliser a few times. The doctors mentioned steroid tablets and inhalers. I did not want my child to have steroids unnecessarily so read around the subject and found that giving up dairy and perhaps wheat too could help him. There were also natural supplements and even homeopathy treatments that were said to help alleviate his symptoms. I persevered with the diet etc, but looking back, in eliminating dairy I was putting all sorts of additives and 'fake food' into his little body. Soya was meant to be a good alternative, but he couldn't tolerate much of it. Eventually, when he was coughing all night long most nights, I gave up and accepted the drugs. I still feel guilty that I didn't allow him to have the drugs right away. He may have missed a growth spurt because of my stupidity.

Now put this into context of a young T1 child being fed only fatty carnivore foods. Sounds like a horrendous thing to put a child through! How would you negotiate the school, day? Surely much better to get used to the insulin regimen while the child is still young and to give them as normal a life as possible.

Edit: I believe the people who are pushing this diet for youngsters are just using them as guinea pigs without really considering the impact it will have on the child's life. Insulin is not the enemy and is necessary if the body can't produce it.
 
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Billy Barroo said:
Can you please tell me how did you came to the conclusion that I was giving out misinformation? Those links are genuine and my own personal type 1 diabetes story is genuine.
Click to expand...
The short answer. It was inappropriate on a topic souly regarding technical issues with a Dexy..

Rest assured, you still have “privilege” to post on these boards, a PM would have been more appropriate..
 
"I can post some links from decades ago proving that it hasn't changed but is it worth it"

Yes if you have the links post them I for one would like to see them.
 
HSSS said:
Hba1c tests do not diagnose type, just levels over the last few months. A single normalish c peptide test doesn’t confirm type either. And it’s what other blood tests you’ve had we keep asking for, specifically any antibody tests. Type 1 honeymoon is not the same as remission. Remission is not a term used about type 1, only type 2.

We may not be drs but as a group we are well informed about the tests and language and practices extensively used by drs.

We are saying you are making medically confusing explanations for your situation and as a result you are giving false hope to at least two members that I have seen comment and who knows how many that have just read it not posted. Yes you have found an extreme way to manage your situation for right now (regardless of accuracy of diagnosis or terminology used to describe the situation) which is great for you and can be shared but please take care to use reliable explanations.
Click to expand...
"We are saying"?...... WHO IS THIS WE? Have you read the forum rules recently? especially where it says: Important: Members are generally not Health Care Professionals "Members are unable to diagnose any condition, or instruct in the alteration of medication irrespective of personal or professional standing or experience, or make negative generalisations about diabetes types. Entering a discussion to belittle or discredit someone. I see that a lot on here. The confusion stems from the uninformed that have not had the personal experience of going into remission. I'm speaking about my own personal experience and I'm not trying to advise anybody, they can take from it what they want and if they choose to try it, then that's their choice, they can make their own minds up.
 
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