What do 150 people think of nutritional ketosis in Type 1 diabetes?
Between 2021 and 2022, over 150 people clicked on the survey on www.type1keto.com. It was done to take a snapshot of how people heard about nutritional ketosis, how they were supported in transitioning and how they got on. Thanks to those who participated.
Like all things in the nutritional ketosis space in T1, there were scant resources, and I am grateful to Gerd Birgit Hay who organised the survey in their own time. So this was an independent survey, and the results are published with the raw data unedited. You can make your own mind up.
Also published in full is the free-text section of the survey, which makes reading interesting. It has given a chance for people to feedback on their experiences and will be interesting for those looking at nutritional ketosis but are unsure if it is for them.
So sit back, grab your favourite refreshment and enjoy the survey!
The participants were selected if they answered nearly all of the questions. The sample size was around 150 people. People from around the world completed it, and the breakdown of the 93 participants who identified their country countries is as follows:
The United Kingdom 46, USA 23, Australia 6, Ireland 3, Canada 3, Sweden 2, Austria 2, Mexico 1, Spain 1, Denmark 1, Germany 1, Singapore 1, Israel 1, and Uruguay 1.
(The results in the bar charts below have been rounded and the eagle-eyed will notice that some percentages do not all round to 100%. Also please note that in some of the questions, multiple answers were allowed and this has been made clear in the relevant question).
The age of the participants was:
There are a small number of children but mostly people in midlife and later life.
There were two genders only asked in this survey, 52.7% of responders identified as female and 47.3% as male.
There was no attempt to delve further into demographic details such as salary, ethnicity or financial means, as this survey was focused on ketogenic diets and their impact on type 1 diabetes. However, such detail will be looked for in a follow-up survey, along with more detail about some of the questions asked in this survey.
The number of years people had lived with type1 diabetes was :
The time since diagnosis covers a broad range. There appears to be more take-up of a ketogenic diet in the first few years after diagnosis, but people are adopting it at various times since diagnosis.
There was a wide distribution of age at diagnosis, which reinforces that this is not exclusively a condition that begins in childhood. But seven out of ten were diagnosed before adulthood, which is more typical of the age distribution. Over 1/3 were Latent Autoimmune Diabetes of Adulthood (LADA).
Preparing for nutritional ketosis.
This section of the survey looked at the participants before they transitioned to a keto lifestyle.
This chart shows that many people had already reduced their carbohydrate intake to low carb levels, and a small percentage were already in the ketogenic range. This would not be entirely unexpected as the survey participants were clearly searching for information on improving their control. One in five were still taking a recommended carbohydrate quantity. Still, many seem to have moved away from the low-fat, high-carb recommendation that is guideline advice in diabetes clinics.
One-third of people in this survey were already using insulin pumps, which is a higher number than the population as a whole, which is nearer one in five, but increasing. The number is likely to increase further as pumps become more freely available.
The overwhelming majority of people in this survey were using methods to continually monitor their glucose, which is the preferred method for transitioning to a keto diet. It aligns with the UK NHS recommendation to make continuous glucose monitoring (CGM ) available to all. In this survey, one-third were self-funding, but since the NHS policy change, all UK residents will be eligible for free CGM. This will not necessarily be the case internationally, and around half of the survey respondents were from countries outside the UK.
How long had people been on a keto diet in this survey?
Over a third of people (59) had been on a keto lifestyle for 4 years or more which, for the purposes of most studies would be considered long-term.
It is possibly not surprising that only 7.5% of people looking for advice on ketogenic diets received it from what would be considered authoritative sources, namely healthcare professionals. Dieticians were the least likely to recommend keto diets out of all the resources available. As will become clear from the other entries in the survey, this did not seem to put people off using mainly the internet to guide them. However, it did confuse some, as the responses to the next question show that almost half felt their clinician advised against it, and an even higher percentage felt they had to go it alone. Given the results posted in the rest of the survey, it is not an ideal state of affairs.
A follow-on question as to why their diabetes clinician might advise against a keto diet was sent to www.type1keto.com subscribers, and 19 responses were analysed. The results from this small sample are revealing.
The main concerns of clinicians in this sample were:
- Risk of hypoglycaemia 25%
- The belief that carbohydrates are an essential macronutrient 19%
- Stroke risk 12.5%
- The diet is unsustainable or bland 19%
- Diabetic ketoacidosis risk 12.5%
- Cholesterol concerns 6%
- Adhering to NHS advice, 6%
Apart from stroke risk and concerns about cholesterol, which comprise around 20% of concerns, 75% are not based on fact. The lack of long-term data makes it impossible at this point in time to evaluate stroke risk, but proxy markers such as weight, HbA1c, blood pressure and reduction in insulin volumes, all discussed below, would suggest that the outcome will be favourable for these risks.
There were equal numbers of clinicians who thought the diet was a fad. So, 50% of clinicians viewed keto negatively, and 50% were positive. The response to this professional opinion from responders to the survey is shown below.
Medication in addition to insulin
A small percentage of people were on additional medication to insulin, only around a third. As well as prescriptions for preventing heart disease, such as statins and antihypertensives, we see other medications for erectile dysfunction and depression, highlighting the pervasive effect of type 1 diabetes on many aspects of life.
Likewise, few people in this survey reported complications of type 1. And many had been living with the condition for over 30 years.
transitioning to a ketogenic diet- Carbohydrates, insulin, HbA1c and weight
Whereas 3% of survey respondents were eating fewer than 50g of carbohydrates before the transition to a keto diet, that changed to almost 90% after the transition.
This chart shows large reductions in HbA1c after the transition to a ketogenic diet, with over a third of people reducing HbA1c by more than 10 mmol/mol.
Every person in this survey reduced their insulin volume by changing to a ketogenic diet. It is known that insulin promotes chronic inflammation and type 2 diabetes within type 1, so insulin reduction of any amount is to be welcomed. That around 60% of respondents reduced insulin volumes by 50% or more is noteworthy and is against the trend of increased insulin requirements with time since diagnosis. It merits serious investigation.
Hypo reduction
78% of responders experience half or more reductions in hypoglycaemia with half experiencing three times fewer or more. For T1 this is a very significant finding. Hypos are a common occurrence and can disrupt activities of daily living.
Some people experienced increased hypo frequency with the transition to a keto diet. Even though this was small in percentage, it should give cause for concerns on safety and merits further investigation as to why. Improved information and support would likely help these people; a follow-up survey will help identify the factors leading to this. That 90% had to go it alone probably plays a part in this figure. Anyone taking responsibility for providing information needs to take note of this chart.
The survey did not look to quantify weight loss. For some people, it is a desirable outcome of a keto lifestyle but is not the reason for adopting a keto lifestyle in type 1. Weight loss would be expected with the reduction in insulin volumes experienced by people who transition to keto as insulin promotes fat storage as one of its many actions.
Ketosis and diabetic Ketoacidosis
This group of responders seem to take a relaxed attitude to ketone testing. Consistently a third of people do not test for ketones. In 75% of responders, the ketogenic blood ketone level is between 0.5 mmol/l and 1.5 mmol/l, a low-end safe level of ketosis. It is probably because of the relatively high insulin concentrations resulting from the subcutaneous delivery method, which will have a relative blocking effect on ketosis. It is reassuring that the ketone levels are at a very safe nutritional ketosis level. It is a metabolic fact that nutritional ketosis is not a risk factor for diabetic ketoacidosis, and a set of survey responses should reassure clinicians. A follow on survey will look at why people are not testing to ensure that it is not because they don’t have the equipment available. All people with T1 need blood ketone testing devices.
Other ‘soft’ side effects and the response to keto
This section looks at the little-mentioned but frequently experienced soft side effects, mainly of autonomic functioning. It covers hypotension, palpitations, joint pain, urinary frequency, skin changes, neuropathy, dentition, brain fog, and vision. Between 30 and 70% of people had some sort of soft side effect. Symptoms improved in many of the responders.
Postural hypotension can be troublesome and affect half of the people in this survey. Some people improved, and a small percentage experienced worsening symptoms. The most likely but not proven reason for this might be the lack of knowledge on the blood pressure-reducing effects of a keto diet. 12% of responders were taking antihypertensives. Something to follow up on and for a clinician to ensure that any potentially vulnerable person gets information and support.
The findings on improvement in joint pain are in line with the effect of ketosis on tissue. It has been reported in other articles on joint pain and fibromyalgia.
70% of people experience brain fog, and of that 70%, there is a 78% improvement in symptoms ( 55% is for the total, 55/70×100 =78%). This is very significant, and one can imagine the beneficial effect this has for people with type 1 who are involved with complex tasks. The most obvious is driving. Having an accident (or being the victim of an accident involving someone who is brain fogged), knowing there is an alternative diet that will greatly reduce it should motivate one to look at the benefits of ketogenic diets for driving. A strong case can be made for providing information to drivers not only because of the improved clarity of thought but also the reduced hypo frequency (above) and improved clarity of vision ( below).
Mental Health
Do you think that having Type 1 diabetes directly affects your mental well-being? This is about having type 1 diabetes and not any particular dietary choice. It is not a mental health screening tool, just to get an idea of the impact of Type 1 diabetes on mental well-being.
The responses here were broadly in line with published evidence. However, 24% of respondents felt that their mental health had improved since a diagnosis of type 1 diabetes. This was intriguing as it did not fit the general view of type 1 and mental health. So a follow-up was carried out on involving subscribers to type1keto.com.
77% (30 people) answered that they felt T1 negatively affected their mental health.
18% (7 people) answered that there was no change in their mental health
5% (2 people) answered that T1 positively impacted their mental health.
Around half of those responding provided comments.
Of those stating that type 1 had a negative effect on their lives, the overwhelming reason (15 replies) was diabetes-related stress: that is, the impact on the decision-making in daily life and the restrictions on freedoms in things like travel abroad or work and the planning involved in managing T1 around this.
Other comments made were that, as a parent, it can be very stressful having a child with T1, and it affects parental mental health as well.
Lack of support from clinicians was also highlighted. ( 3 replies).
For those who had no change in mental health, comments were that they were diagnosed at a very young age and know nothing else, to accept the diagnosis and ‘get on with it’, in the sense they were grateful their diagnosis was not worse.
For those with a more positive change in their mental health, technology was a factor, and also the relief of a revised diagnosis of T1 after an earlier misdiagnosis of their symptoms.
Change of diet had a positive impact on mental health and was cited in 25 % of replies.
This is clearly a small sample of people who subscribe to the type 1 keto.com site. It compares to a question on the original survey where 67% of people thought that type 1 had a negative impact on their lives.
It is difficult to find data on such a direct question in scholarly articles. Still, there is an acceptance that type 1 diabetes has a negative impact on mental health JDRF quotes for depression rather than ‘mental health’. Depression is estimated to affect one in four people with diabetes (type 1 and type 2). Adolescents with type 1 diabetes have five times the rate of depression than adolescents who do not have T1D. Another source has quoted 20% for generalised anxiety disorder, which is a very severe form of anxiety. These are big numbers and reflect the impact of type 1 on severe mental health. So these survey results on how type 1 affects a sense of well-being are probably an accurate reflection of the situation in the real world. The next survey planned will provide a comparison to this question and delve more deeply into the topic.
Employment
The final question involved exploring the impact of type 1 diabetes on work and if a keto lifestyle reduced diabetes-related absences from work. There was a modest improvement, but the impact of having type 1 diabetes on a person’s ability to work is clear. In some industries, work absence can have implications for job security.
Freetext
This section contains all of the free text comments obtained from the survey. They are unedited, and none have been screened for suitability to publish, only to ensure no person identifiers in the comments. This was a chance for responders to have a voice and relate their experiences of transitioning to a keto diet in type 1 diabetes.
Thanks to everyone who completed the survey and follow-up surveys. We can use the results to further our case to make information about keto diets available to all.
If you would like to comment please do so via the contact page. Thanks
| Experience (text) |
| I love steady blood sugar results with low carb. I do miss pad thai and garlic naan sometimes. Overall, I think it’s the best way to go for T1 Diabetes control. |
| Was low carb before diagnosis; am low carb after diagnosis. Was raised with a certain Mediterranean type foods and no grains because of inability to digest them. It’s crazy to think one can survive and thrive on processed foods, much less so if type 1. |
| I am pretty angry about the fact that doctors never recommended me a Low-Carb diet as an alternative way of eating. I had huge improvents in Hba1c, weight loss and overall well being on a low carb diet. |
| One of the selling points given to me was that I would also lose weight. This wasn’t the case and I don’t think should be used. It is a bonus if this happens for you but it doesn’t for everyone. Also that you can snack on fats and proteins as much as needed-this also isn’t good advice as encourages over eating when we should be eating in response to our hunger signs which on a low carb diet you can begin to get these back as part of a healthy, balanced diet. |
| I have taken part in this survey on behalf of my daughter; however, we have all adopted a low carb lifestyle. |
| Small number of people doing this T1D & Keto. Hard to find support. |
| In addition to low carb I also do some fasting and that has had a positive impact on my bloodsugar control. |
| I would like to read the result of this survey somehow when finished/yearly? |
| I can’t believe that this was mot mentioned at diagnosis |
| Dieticians frustrate me greatly, very linear approach, no discussion around other options. Nurse at my GP practice is amazing and has given me (Pre-diabetic) lots of positive advice that helps for my young T1 daughter. I find dosing for protein very difficult at the moment but no support to enable me to get this right. |
| Low carb is extremely positive for my well being and that if my family, as it reduces the roller coaster, and avoids severe low. I wish there was more medical support to help reassure my family and friends that this really is appropriate for a T1. |
| Switching to a low carb lifestyle has enabled me to achieve blood glucose control I never thought possible. I rarely hypo and I no longer dangerously spike from my meals. I am in range 99% of the time (3.9-6.5 mmol/l). The other 1% is when I’m hormonal or poorly, which is out of my control. Looking back at how my levels used to be makes me so sad. I wish every person with type 1 diabetes knew that there is a safer way to manage this condition. All diabetics deserve the same blood glucose levels as non-diabetics. |
| It took about 3 years to transition to keto but I immediately picked up on the potential because it’s only when I eat carbs that my blood glucose varies. There are many online groups that support this lifestyle and I think the negative feedback from many specialists does cause issues. Fortunately I am happy to make my own health decisions. At my annual review, the dr I spoke to told me that it was ‘dangerous ‘ to pursue normal blood sugars. I had not previously met her and this was a telephone consultation which prevented me from assessing her age (experience) as this can sometimes be a factor in whether I believe what is being said to me. Language is very important! She closely questioned my overnight bg levels and erroneously diagnosed that I was ‘hypo’ unaware when I said that ‘of course overnight I may not notice as I’m asleep’ ! This is what she reported to my gp. I was concerned recently by advice published recently by Team diabetes 101 on treating hypos which would cause a huge rebound if I followed the advice. I am also hugely concerned about what would happen if I was hospitalised with severe COVID because if I was taken off my standard pump setup to an insulin and glucose infusion it would take weeks (even if I was well) to stop my bg spiking as general medical drs do not understand low carb…terrifying! |
| After adopting low carb my a1c has dropped from 59 to 42 mmol/mol. My nurse was horrified, and claimed I must be hypo-ing all the time. I said I’m not. They didn’t even ask how I had managed this. I was so surprised that a professional who is meant to help people like me all day wasn’t curious as to how I had obtained this a1c. Regardless, I will strive for lower. |
| I wish I had discovered low carb many years ago. When diagnosed I was instructed on how many carbs per day to eat, at each meal, snacks, and if getting full to make sure I ate my carbs. Over time this led to massive weight gain and erratic blood sugars with spikes and drops, a rollercoaster! I discovered low carb myself, with opposition from the medics, but I went ahead anyway and tried it. I feel so much better in myself, my blood sugar levels are much more stable, my hba1c has dropped from around 80-90 down to 46. I have also lost almost four stone in weight in the last 2-3 years, and am now about a stone above a ‘healthy’ BMI. I am concerned that medics still promote high carb to diabetics when there is now so much research available on the benefits of low carb. |
| LC has definately helped improve my BG control both in terms of average and std deveation. This leads to a more normal quality of life. |
| I feel it’s the sensible way to keep as healthy as possible with or without diabetes. Ensuring no processed food is in my diet only fresh ingredients and cooked from scratch |
| I wish I knew about low carb sooner as a T1. It has made my bgs flatter more consistently thus removing the sheer frustration of trying to control it. I also feel better all round and know that carbs do not need to be central part of diabetes management! |
| I am finding it hard breaking habits. Whilst around 75% of my diet is now lower Carb, I am struggling to make it 100%. Even though I know it is good for me. It’s hard to change things after so long |
| Medical profession is unambitious for their t1 diabetic patients. They do not realise normal blood sugars are possible with a low carb diet. Please get on board! |
| Super annoyed that the medical professions will not at least inform patients about the option of low carb. I have totally lost my trust in the medical profession, they say lowering HbA1c is the most important thing, but is more scared by high LDL. The internet saved my life! |
| Since moving to a low carb diet the management of my diabetes had improved considerably. In particular the ability to maintain blood glucose levels within the normal range (4-6) is vastly improved (near impossible on high carb diet). The low carb diet has not only provided me with better consistency of glucose levels, it has also allowed me to; lose weight, improve mental health, allow more physical activity (sports) without hypo’s, improve memory and general mental awareness, has improved my general mood which has been noticed by others close to me. |
| I’ve been T1D 41 years, and doing Leto for 3 months and insulin levels are down from 49 units a day to 17. I have lost 20 pounds. I wear mini Med pump paradigm and a libre 2 CGM |
| Hard to maintain, but the benefits in glucose control are worth it. Weight down but cholesterol still quite high. |
| Been low carb for 8 weeks. There was no option for less than 1 year. It’s been a game changer for my blood sugar control. |
| I adopted low carb very soon after diagnosis so find it hard to remember how a high carb diet affected my insulin levels. I am also very active and take part in endurance activities and find that there are no issues in maintaining this while on a low carb diet. |
| Everything has been positive. I am healthier, happier and stronger. |
| It’s hard doing it at school but there are so many options at home. My mum finds the clinic hard where they acknowledge amazing control but some are very angry about the lack of carbs like bread and pasta. |
| I started the paleolithic ketogenic diet 9 weeks ago. It dramatically lowered my insulin needs to the point where I dropped insulin completely 5 weeks ago. My blood sugar is steady and in a good range (85-125 mg/dL) 95% of the time, with no lows. This is on a 3000 calories diet with steady weight. I’m very slowly adding carbs back in (currently 15g/day). Highly recommend for those with LADA. |
| So much easier than a high carb rollercoaster. |
| Everyone – not just type 1’s should follow this way of eating. Feel fabulous |
| I feel better. Other conditions like IBS has improved a lot. Also I have stopped binge eating and lost weight |
| I am doing low carb but not keto. I also do intermittent fasting eating only at dinner time and only occasionally at other meals. It is frustrating that HCP do not seem to know about low carb and how to manage it. I also have been a vegetarian for many years and find that low carb and vegetarian can be a little tricky. I wish I knew more ab out combining the two. I also wish I could get some decent info with research on fats (which ones & how much) and statins (how important is it to take these) and which blood tests to take for CAD predictions and how to lose weight. |
| My ketogenic diet and other additional techniques have resulted in normal blood sugars and lack of hypoglycemia which has greatly improved my outlook on life. I can sustain the low carb lifestyle for the rest of my life without feeling I am missing out on anything. |
| Eggs meat cheese nuts |
| There are a few of the questions where it would be nice to answer “other” or “don’t know”. Very first question I actually started low carb on my own because that was how i could control my bs and then i started losing weight as well. Wasn’t told by a friend or the Internet. It all helped with my retinopathy and mental health. So I think it is a natural approach for diabetics when they want their bs well controlled. We have just been told not to do it. But it is obvious that you need less Insulin and it is easier to control bs. So if that is your main target you will cut carbs. Also I take magnesium because of my diabetes. And there are many of the tests I am unsure if I have had taken. |
| Low carb has been the most positive thing i have done that has affected my condition & reduced my anxiety around my BG levels fluctuating as they are more steady & in the ‘normal’ range. I had, nor have any personal help with it, I saw Dr Ian Lake speak in a video on www.diabetes.co.uk, bought & read Dr Richard Bernstein’s book & decided to try it. I am astonished at the aggression towards T1ds on Low-carb on social media. I am also aware that the UK medical profession/NHS do not encourage or endorse it for Type 1s. For this reason I do not tell any of them what I am doing. I am amazed when they see my results and NEVER ask me about 1. How I have managed to improve so much so suddenly & 2. What I’m doing or anything about my diet. They seem to look on the negative side & say that with such good HbA1c results that they are worried about Hypos (I have less of them since being low-carb & they aren’t as severe). Of course, My cholesterol level (total) is higher but individually in proportion. They keep trying to make me take statins (they made me very ill) so I refuse. Something must change soon in the NHS in relation to how people with diabetes are treated & told to eat. I am determined to try to not get any of the terrible side-effects of constant high blood glucose & so far it’s working. |
| I feel my control has improved massively and no longer have highs and lows like before. No severe hypos whatsoever which is my greatest concern. |
| It is life changing. I can’t comprehend that doctors do not use it as a standard of care for t1d. I was like so many others who, when first dxd was told “eat what you want and cover with insulin”. That is so irresponsible and damaging. I love the food I eat and have fantastic control. When I make the conscious decision to imbibe in a sweet treat, my libre shows me how damaging it is. There is NO way to get the glucose and insulin timed perfectly which results in crazy highs and lows. |
| I was lucky that i got i to LC/keto early on within months of beiing diagnosed. It makes me angry that the option is not even discussed. I was told to eat what I liked inject to eat cakes etc. In hospital for breakfast toast and cereal ! |
| The low carb lifestyle has massively changed my life for the better and I am a huge advocate for using this approach as a way of managing my T1D now. If only I had known more about this option and the potential benefits earlier on! |
| I have felt more in control of my diabetes and feel more confident about it since going low carb. I feel less despair which i used to have previously when my post meal blood sugar levels used to spike. I wish there was more support and understanding from consultants and diabetes specialist nurses. diabetes uk mission statement also states that low carb eating is not recommended for type 1 diabetics. |
| It’s is 100% sustainable and easy and satisfying. However, there are still times when I indulge in higher carb food items on a planned basis. I know I will deal with more unpredictable blood sugars as a result. At least it’s planned for and not a constant. Frustrating that treatment providers are not on board with this lifestyle despite evidence of better control. I think keto is misunderstood as meaning bacon and eggs. It is a whole foods, minimally processed low sugar way of eating. |
| Less anxiety and sense of failure about rapid blood sugar changes. Less lows and blood sugar variability so less tired each day. More stable blood sugar during exercise. Appear more sensitive to carbs and may need more insulin than I used to to deal with a higher carb meal. More stable blood sugars overall. Less insulin induced hunger. |
| I actually started low carb the day I was first diagnosed with diabetic level blood sugar 16% HbA1C! Discovered as part of a regular annual wellness check. I had been on a high soluble fiber diet to reduce blood cholesterol. Well didn’t work! I had both totally out of control HbA1C levels and high cholesterol. The same day I got the lab results I started researching. Still not knowing if I was T1 or T2 (and hoping against all odds that I was T2) I came across two basically opposite approaches. the low carb world or the eat more health carbs world. Since I was already eating a “healthy carbs” minimal processed food, high fiber / low sugar diet, more of the same obviously wasn’t going to help. I immediately cut out almost all carbs, tried Dr. Fung’s methods (Keto + intermittent fasting).. plus the basal insulin given to me on the day of initial diagnosis. Within 3 months my A1C was already down to under 6%. The early symptoms of neuropathy (tingling in my legs) had vanished (even without bolus insulin, just 1u/ day of basal and low carb) The more obvious symptoms which I had been trying to ignore (thirst, need to get up multiple times at night…) all had disappeared in days. I would note that I am not deliberately trying to be in Keto or not in Keto. I eat a very low carb diet (I don’t even bother counting carbs) more of a Low Carb High Protein diet. I am not deliberately adding fats or avoiding (except for full cream in my coffee – but that is more to avoid the lactose in milk than to add fats) I do measure blood ketones occasionally but more because I am an engineer and just like numbers. I will say that the diagnosis was a massive wake up call for me. The same day I was diagnosed I started an exercise program to improve overall fitness (at the time I was desperately trying to convince myself that it would reverse my none existent T2dm) I have continued this and in many ways am now in better physical shape than when I was in my 30’s over 20 years ago! Finally I would note that while I never really experienced day to day up down rollercoaster glucose level (ok I have cheated a few times and almost always quickly regret it!) but I do not feel any significant mental or physical stress as a result of the T1DM. I very rarely experience hypos and then it is mostly a result of changes in my exercise more than anything else. I do not keep little boxes of apple juice next to my bed, because I don’t need them. I have no detectible damage caused by high glucose and since I keep my glucose mostly under 100mg/dl ( I am ~90% time between 70-100 based on my GCM) I wouldn’t expect to develop symptoms. If occasionally I miss and wind up a bit high or less control that I expected, well mistakes happen and that is tomorrow is for. If there are things that frustrate me, it is the attitude put forth by the major diabetes orgs which are causing so much pain and damage. The obvious marketing choices by certain medical equipment manufactures which make achieving normal glucose more difficult etc. By the way nice site! Cheers! |
| It has totally changed my life ! I finally feel I am in control of my health . I have much more energy , cravings have reduced and I eat less |
| I read and follow Dr. Richard Bernstein |
| Just like to say that I’ve been low carb/keto since diagnosis (basically). I feel like it truly is the way to go for a type 1. I feel great! My last A1c was 4.8 so I’m very happy about that! |
| Patients should be given information on low carb management of type 1 diabetes as an option. |
| Away from work is only because of dr appointments or Tagung part in diabetis study |
| In four months I have lost 30 pounds abd lowered by A1c 2.3 points |
| It’s the first time I’ve felt good health in 28 years. Low carb is part of it, but the animal organs help too! |
| thank you for putting the information out there. This will save my life in the long run |
| Diagnosed Aug 2019 aged 61; clinicians told me not to use internet to find out about Type 1 and also to ‘eat normally’ and take insulin accordingly. It took me until January 2020 to discover and read Dr Bernstein’s book and I feel furious with my medics for not telling me about the benefits of low carb. I needlessly experienced 4 months of a relatively high A1c which then dropped straightaway, of course, and is still dropping, as soon as I started low carb. DSN and consultant have offered absolutely no encouragement about the fact that my A1c has gone from 13.6% to 6.1% (my aim is 5.6% or lower) – in fact, they won’t discuss it and merely say that ‘most people can’t do that’ (i.e. eat low carb). The medical establishment needs a kick up the backside for the appalling lack of professional care being given to Type 1s – as evidenced by your stats on lack of achievement of safe targets for over 90% of Type 1s. This is a grotesque and unforgivable failure on the part of so-called caregivers/clinicians. In the last 10 months I have also been able to resume running and cycling (min. 2-3 hours daily) because I now have the energy to do them and feel fitter than I did in my 30s when I ran competitively. This has only been possible because I eat a max. of 30g carbs and inject 6-8U Levemir and 6-8U Novorapid daily. Terrible struggle, too, to be prescribed Freestyle libre (self-funded for 8 months) and wasn’t even told it existed – discovered it myself on the internet. Would prefer to have Dexcom 6 because of the alarm but my health authority only uses Freestyle – another battle ahead for me. |
| It helps keep my blood sugars very steady and my hba1c has been between 4.9 and 5.3% for the last 3.5years. With a tight SD. Low carb should be offered as an option at dx and Actrapid should be made available for people to trial. |
| My son is 19 and has type 1 for 15 yrs. No support from clinic in fact they prescribed metformin for signs of insulin resistance instead of giving us diet options. Massive improvement in just 3 weeks of lowcarb. No bone or muscle pain. Better mental health. Reduction from 8 to 6.6% in 3 weeks. |
| I wish more type 1s knew about this option (to live a happy , healthier life). I wish my diabetes team had at least one dietitian and one consultant, who were keto / low carb experts. I need to trawl through the internet and rely ‘on the kindness of strangers’ to learn the mechanics of managing T1 within a low carb diet. |
| My biggest fear of being a Type 1 were for severe hypos whilst alone. This had happened in the past. My control now is so much better with less insulin and no large doses. I would highly recommend a low carb diet for all diabetics and feel let down and misguided in the past from ‘specialists’ who don’t have to live with being a Type 1 |
| Choosing keto has revolutionised my life for the better. |
| As an active individual I have found that low carb reduces incidents of hypos. |
| I started low carb as soon as I was diagnosed as eating the carbs the dietitian told me to eat made me feel awful. |
| Low carb has been liberating. I can’t see that I’ll ever go back to eating so many carbs. The downsides are so great. Low carb is sustainable, it has given me food freedom and my health back. |
| My life is far less stressful and T1D has minimal impact now on my life. Hba1c 4.8 |
| It has changed my diabetic life totally. No snacking, no need, as not hungry between meals.I work hard to keep my hbalc around the mid 40’s, which is miles from where I use to be. I firstly purchased the libre for six months, then having taken the DAFNE course and some extra requirements, I was offered the Libra on script, for which I am truly thankful from my supporting GP Surgery. I was then offered the insulin pump, which makes me full more normal. It’s my artificial pancreas. |
| Diabetes diagnosed in 2002 – T1 only diagnosed following DKA in Jan 2020. At that time medication was metformin and empagliflozin. Insulin prescribed then, but managing on half prescribed amount due to low carb diet. |
| I’ve found a low carb lifestyle has really improved my health and fitness as well as heightened my understanding of many of the surrounding issues. |
| I’m answering this on behalf of my 10yo T1 daughter. I can clearly see the benefits of low carb for everyone and her control is much better with less carbs. It is a challenge ensuring that she doesn’t feel different as so many people eat so much ultra processed carbs. Even though I have never been over weight i have reduced my refined carb intake and now dislike sweet tasting foods. |
| I went low carb as soon as I was diagnosed so some questions hard to answer but did my best. I was diagnosed (type 1 ) while pregnant and completed that pregnancy and another both with low carb |
| I dont think that there is enough good advice or support available for people to make good choices about their diet. I was told that i could eat what ever i liked. When i was in hospital they were actually serving toast and cereal for breakfast ! I wish i had known the what i know now. |
| The low carb diet is the best adjunct treatment for type 1 diabetes. It has made my life less stressful and safer. I feel better mentally, emotionally and physically. |
| Been low carb all my diabetic life. Lean and mean according to my doctors! Have had insulin pump for 5 years before cancer and then it stopped working in my skin.. 4 small different types of insulin per day. Insulatard & tresiba, fiasp and Novorapid. Consuktant let’s me manage myself as I’m the expert he’s the specialist. |
| Low Carb has greatly improved my BS control, my HBA1c and my the amount of time I spend fussing over my condition |
| Better blood glucose control; improved memory; more active; |
| When I started low carb – 16 yrs ago – people thought I was crazy, but I had great results for many yrs. In the last year I have had problems with my legs, but doctors don’t know the cause (not necessarily diabetes, my diet and my bloods are fine) I thought it might be low carb as I don’t know anyone who has been on this as long as me, so I tried a vegan diet. It was awful. High sugars, foggy head, kidney pain… I’m back to low carb. Until there’s a cure, (or a looped system) this is it for me. |
| I’ve been a T1D for over 60 years abs have been on a low carb diet of about 60 g of carbohydrates a day. In mid September I started on a lower carb diet and then switched to Keto. I cannot believe the difference thus has made to my levels. I’m so excited by it all. Why aren’t GPs and Medical Professionals shouting it from the roof tops. What are they doing? I’m currently reading the Diabetic Solution by Dr Richard Bernstein and he’s know about it for years. I guess better late than never. |
| Low carb changed my live completely. I’m fully convinced typ1 should be treated in this way. |
| I´ve adopted low carb since 13 days now. My last novorapid shot was on feb 4 (2u)!. I was taking approximately 25-30 u daily, (besides of my lantus daily take). I could play tennis again (yesterday I try and was OK!!).. I could not play anymore because my hypos were absolutely uncontrolable and get sick. //Today I´m having an appointment wity my diabetologist and also with my general Doctor. I´m going to tell them about my experience and determination to go on with low-carb diet. I´m expecting to get a push back feedback, and that´s the point about staying alone in medical advice. I´ll see… |
| Much better control of blood sugars. CGM was a game-changer. I was poorly educated on the importance of reducing insulin use, and how weight impacted how well it worked. Have lost 70lbs. |
| I would be dead by now without low carb. My insulin requirements are significantly lower, therefore reducing inflammation. I strongly believe the LC lifestyle has strengthened my immune system. I have not worn a mask since last April (2020), and do not social distance. I attribute this to LC, low insulin, low inflammation and foods to boost the immune system. |
| I started my journey on low carb about 4 years ago. I only used 10 units of fast acting insulin a week, with 20 units of background daily. I felt great, exercising 4 times a week doing boot camps and running 4-6 miles twice a week. I decided to do a half marathon and was scared to run the event without carbs onboard, so I carb loaded and ran the race, problem was…I didn’t start back on this journey until I saw my wife watching your talk and how you ran 100 miles. So I’m back now, have noticed changes already but need to get some advice and guidance so I can commit and live this new lifestyle |
| Very little understanding amongst medical professionals |
| Although I still have frustration as a T1D daily, I would never go back to a non-very low carb lifestyle and wish I would have found this lifestyle and way of managing my diabetes much sooner than I did. It’s a life changer in my opinion. |
| THE BEST decision I ever made. Wish I had known sooner about the low carb option. I am now 2 years carnivore. |
| 1. Following the advice in Dr Bernstein’s book “Diabetes Solution” has been completely transformational for me in a very positive way. I have regained energy, lost a huge amount of weight and have better/calmer mood. In addition my triglycerides level, which previously was extremely high, has moved into the normal range, as has my total cholesterol/HDL ratio. 2. Please note that, in relation to the question on hypos, I have never had a hypo. |
| I find low carb (not strict keto) works on so many levels. I have more energy. I am active and this allows me to continue whereas eating high carb injecting insulin started to make me reluctant to exercise and become depressed as a result. I was constantly anxious and found that an insulin pump caused my anxiety to increase and did nothing for my Hba1c results. I literally woke up one day and thought ‘i am asking health professionals for advice and they are killing me slowly and i am going to die a very stressed drawn out existence if i don’t take charge myself. If I eat low carb I have a clear CGM almost non diabetic result if i follow the recommended diet my graph looks like i am pre-diagnosis. It is complicated to follow low carb-i find that if i eat no carb my body reacts and I need more insulin but eating around 60g daily spread out works great. I am better with diary and fish protein and plant based fats. If I was to label my diet I would call it low carb Mediterranean. Eating out is hard work and can cause stress. I have had hba1c of 10% for several years and managed to get 8% and now 7% on low carb and for the first time feel that 6% is doable. I think that health professionals and us diabetics need to understand that changes in eating take time and Hba1c drops can take a year or more to achieve and stop evaluating low carb on the basis of immediate results as this is not how a type 1 body works from my experience. I am also mindful that as time goes on and my body adjusts i may be able to go even lower carb. I am cautious because i have done this and ended up feeling really ill and eating carbs again. I think the carb cycle is a real thing and easy to get into a difficult situation with where you can become obsessed with your diet which is not healthy. |
| I have very few low blood sugars on this diet. I exercise serveral days a week and appreciate the reduction of low BG. |
| I was mis-diagnosed as Type 2 aged 51, started on keto diet within months, lost 4 stone over 18 months, and managed BG levels very well. Feb 2021 BG levels increased consistently- requested GAD & c-peptide test. Confirmed as Type 1 all along but keto diet had kept it “managed”. I started on insulin. Have continued with keto – take 11 basal units daily and 1 or 0.5 units bolus per meal. Now Hba1c 44mmol/mol – in Feb 2021 was 65mmol/mol. I’m happy to be contacted to share more info, if helpful for research. |
| Keto has been a life saver. My last A1c was 5.6 (US). My biggest challenge is finding a doc that understands and is supportive of my dietary choice. I am constantly told that this diet will do more harm than good. |
| Lack of good medical information is absurd, medical doctors and hospitals are severely lacking! |
| Moved from low carb to keto to carnivore…carnivore easier and more effective in managing blood glucose. |
| I now feel in control of my Diabetes, whereas when I was allowed to eat as many carbohydrates as I wanted, I was on a constant rollercoaster (for 36 years !) of high and low blood sugars and all of the damage that that entails. I have to lie to my Diabetic consultant when she praises me on my HBA1C as she is totally against low carb – along with the dietitian too ! |
| Hi I’ve not been able to keep a low carb diet going as well as I know I could do as I have no support in what exactly I’m meant to eat from any NHS dietitian, doctor ,diabetes specialist, I get no support even tho I know it will help me live a longer and healthier life |
| I think it’s great but I do think it’s much more complicated to get it right than simply going on Keri and everything else working itself out |