People who have type 1 diabetes and excellent blood glucose control are statistically rare.
These ‘overachievers’ typically have been influenced by the work of Dr Richard Bernstein.
People successful in their management of type 1 diabetes control the amount of carbohydrate in their diet to prevent “the blood sugar roller coaster”.
As well as calculating the insulin required for carbohydrate, those who manage type 1 diabetes well typically also have a way to calculate their insulin dose for protein.
Exercise and fasting also help to improve insulin sensitivity.
background
According to the T1D Exchange [1], 1.2% of type 1 diabetics in the US have a ‘normal’ HbA1c of less than 5.7%. Twenty nine (29) of the twenty five thousand type 1 diabetics in the database (i.e. 0.1%) have an HbA1c of less than 5.0%.
I am privileged to know quite a few people who are conquering type 1 diabetes through the TYPEONEGRIT Facebook group [2] where you will regularly see posts like this one.
Rather than just talking about the theory I thought it would be useful to profile a handful of the people that have been an inspiration to us and have shown what it takes to not just survive but thrive with type 1 diabetes.
What do each these people have in common that we can learn from? What do they do differently based on their situation?
Dr Richard Bernstein
Dr Richard K Bernstein [3] has been the ‘voice in the wilderness’ of the low carbohydrate movement for four decades. I first came across Dr Bernstein in episode 683 of Jimmy Moore’s LLVLC Show.[4]
Despite having type 1 diabetes himself since the age of twelve he is still going strong at eighty one years of age. Bernstein’s is a fascinating story and an example of what can be achieved.
Richard Bernstein started his working career as an engineer. His wife is a doctor so he was able to purchase one of the early blood glucose metres in 1969. In those days blood glucose metres were primarily used to determine if someone who landed in the hospital emergency department at night was unconscious because they were drunk or had high blood glucose levels.
Bernstein, an avid self-experimenter, measured his blood sugars six times a day, and over time gained an understanding of how much a certain amount of carbohydrate raised his blood glucose levels, and conversely, how much a certain amount of insulin lowered them.
At the time he was told it was a waste of time encouraging people with diabetes to measure their blood glucose levels because there was no value in people with diabetes achieving normal blood glucose levels. [5] In spite of this, Bernstein’s early learnings are now the basis of the basal / bolus insulin dosing calculations built into every insulin pump which is used today by the majority of type one diabetics.
At 45 years of age Bernstein went to medical school in an effort to get people to listen to his theories. These theories are still considered fringe today, possibly because they do not align with the dietary recommendations generated by the USDA.
Bernstein documented his system in the comprehensive book Dr Bernstein’s Diabetes Solution. [6] He is also in the process of recording a series of YouTube videos, Dr Bernstein’s Diabetes University. [7] I find it fascinating to hear him talk about his Body By Science-style heavy lifting workouts at eighty-one! [8]
He recommends that people with type 1 diabetes eat no more than 6g of carbohydrate at breakfast, with no more than 12g of carbohydrates at lunch and dinner. This enables people with diabetes to stay off the blood sugar roller coaster and manage their blood glucose levels with smaller doses of insulin.
Bernstein also acknowledges that protein requires insulin, [9] however, for the most part he accounts for this by eating consistent meals and refining insulin doses based on blood glucose measurement after each meal.
Troy Stapleton
I had the privilege of meeting Dr Troy Stapleton at a screening of Cereal Killers [10] in Brisbane in August 2014 where he was on a panel fielding questions after the movie. After the session we cornered him for about an hour.
It was inspiring for us to see someone thriving with type 1 diabetes. At the time my wife Monica was struggling to even think of working because she didn’t have the energy to make it through the day without an afternoon nap before picking up the kids from school. But here was Troy successfully running a radiology department!
The photo below shows Troy (right) with Tim Noakes [11] (centre) and Ron Raab [12] (left) when they debated Carbohydrates – Victims or Villains at the Annual Scientific Meeting of the Australian Diabetes Society and Australian Diabetes Educators Association in Melbourne in August 2014.
I got to catch up with Troy again at the Low Carb Down Under seminar in Brisbane in November 2014. [13] His presentation was excellent and I got to spend some time with him during the Steve Phinney masterclass [14] the next day. He warmly asked how Moni was doing and took a real interest in helping us on our journey.
Troy’s story is worth checking out if you have not seen it yet.
There is nothing confrontational about Troy’s approach. Troy just eats real whole healthy food. Troy just shows what can be done and gets on with doing it.
Rather than saying that everyone should do what he is doing he just says that people should be educated about the options and given the choice.
As well as following Bernstein and Taubes he’s also a fan of Mark Sisson’s primal / Paleo approach and likes to check everything against the evolutionary template rather than relying on associational studies.
When he initially self-diagnosed himself with type 1 diabetes and he went to the endocrinology department of his hospital, they told him to eat 240g of carbs each day and cover it with insulin.
Troy says “Within one week I went back to ask about low carb but was told I needed carbs and that low carb would not work. I continued reading for the next 2 months and became increasingly convinced that low carb was the way to go. I switched to low carb in December 2012 and have never looked back. My blood glucose lowered and stabilised, my insulin dose reduced, my hypos almost vanished and my depression/anxiety resolved.”
He explains how he has been able to extend the ‘honeymoon phase’ [15] of his type 1 diabetes in spite of having the disease for two and a half years. By keeping his carbohydrates low he is able to maintain the function of the beta cells of his pancreas. At this point in time he only needs to dose with long acting insulin, and with only an occasional bolus of insulin with a meal.
Unfortunately people newly diagnosed with type 1 diabetes often burn through their remaining pancreatic beta cells by following the standard dietary guidance and hence their ‘honeymoon phase’ is short (and sweet?), with insulin doses increasing as the pancreas gives out and insulin resistance progressively worsens.
Troy told me his HbA1cs are running in the low fives. His diabetes is controlled with long acting insulin, a low insulin load diet and regular cycling and surfing which he loves! He said if his HbA1c starts to drift up in the future he will add more regular insulin boluses with meals.
Dave and RD Dikeman
I came across Dave Dikeman and his father RD Dikeman via episode 831 of Jimmy Moore’s LLVLC show. [16] I still remember nine year old Dave saying “finger pricks now or amputations later, the choice is pretty simple”.
It seemed so clear and logical for young Dave. However, what he was saying was radical to us after muddling around with mainstream advice for diabetes and no clear direction on how to achieve excellent blood sugar control.
Dave’s father, RD, is a theoretical physicist and chief scientist for Department of Defence contractor Lockheed Martin. RD became passionate about diabetes after finding Dr Bernstein’s book, and after floundering with standard diabetes advice in the months following diagnosis.
Like many family members of diabetics who find low carb, he also has his own story of how a reduced carbohydrate diet has helped him to turn his health around.
The continuous glucose metre plot below shows RD’s own blood glucose levels after a few years of implementing Dr Bernstein’s advice in his family.
This article by RD and Dave [17] offers a fascinating window into their thinking and the secrets of their success in managing type 1 diabetes. Their analysis demonstrates that it is not possible to achieve normal blood sugars with large amounts of carbohydrate in the diet.
It would be impossible for an artificial pancreas based on a CGM and automated insulin dosing via a pump – both of which have inherent lags – to respond quickly enough to high blood sugars caused by large doses of carbohydrate before unsafe levels of hyperglycemia occur.
The Dikemans set up the TYPEONEGRIT Facebook group [18] to support others with type 1 diabetes on the journey following Bernstein’s protocols. As recommended by Troy Stapleton, we joined the group late last year and I can’t say enough about how helpful it has been to see people actually implementing Bernstein’s recommendations in day to day real life.
It is one thing to read the theory, but it’s a whole different thing to see all these people with flat line blood sugars, be able to ask lots of ‘dumb questions’ and share day to day struggles of what is a fairly radical departure from what most people consider ‘normal’.
Once you see the theory in practice you realise that you might be able to do it too. When you see these healthy, vibrant passionate people you stop worrying about whether you’ll have a heart attack tomorrow due to the high fat diet.
The Dikemans also produce Dr Bernstein’s Diabetes University [19] which is getting the word out to a whole new audience through YouTube videos of Dr B.
Lisa & Daniel Scherger
Lisa Scherger is a lady with a fire in her belly when it comes to managing her son Daniel’s type 1 diabetes! If you haven’t seen her short presentation from the Low Carb Down Under seminar in Brisbane in November 2014 [20] make sure you take the time to do it now!
Lisa recently obtained a Dexcom continuous glucose metre [21] which has enabled them to take blood glucose management to a new level and further refine their dosing for protein.
On Lisa’s blog [22] she recently shared her ‘secret’ to flat line blood sugars and how to deal with the blood glucose ‘spike’ caused by protein.
So, for the carbs and fibre I bolused 40 minutes before dinner. Then I bolused for the protein conversion to glucose (gluconeogenesis) 1 hour after the end of the meal so that the insulin would start circulating around the time the spike was due to occur.
Lisa is adamant that accounting for protein in addition to carbohydrates is critical to optimising blood glucose control.
Last night I forgot to set my alarm to do the protein bolus, and I was up until 4am trying to get blood glucose levels down. Daniel’s protein spike starts exactly 2 hours after the meal, and once it starts I can’t stop it. He needs to inject for the protein 1.25 hours after the meal so that the insulin is circulating at the right time.
Learning to dose for protein as well as carbohydrate is a learning curve. Getting flat line blood sugars typically takes some trial and error to refine and perfect.
However the results of Lisa’s attention to detail speak for themselves, with an HbA1c consistently less than 5.0%…
…and a son who is thriving in both his academic and athletic pursuits.
Angela Erickson
Angela is another member of the TYPEONEGRIT Facebook group who recently completed an eighty hour fast in an effort to reset her insulin sensitivity. During the fast she was measuring ketone levels of up to 3.4mmol/L and soon after recorded an HbA1c of 4.7%.
When I asked her what she would say were the secrets of her success were she said:
learning my proper formula for protein that works for me,
exercise, and
fasting.
Angela boluses for carbohydrates 15 minutes before the meal and then doses for the protein 1.5 hours after the meal using the pump, or two hours after with a faster acting intra muscular (IM) shot.
As well as ‘barely eating carbs’ she also manages her protein to make sure it’s not excessive, averaging about one gram per kilogram of body weight per day.
Angela also said she boluses to correct back to 83mg/dl (4.6mmol/L) whenever she hits 90mg/dL (5.0mmol/L) unless she has eaten within the past two hours.
Fasting is not a critical piece of Dr Bernstein’s regime, however, Angela found that she was able to improve her insulin sensitivity with periods of fasting. After one day of fasting she found she had to decrease her basal rates to 70% and to 50% after three days of fasting. And this improved insulin sensitivity continued after the fasting was over.
Periods of fasting can be useful for people with type 1 diabetes to refine their basal rates. Similarly, fasting can also reset insulin resistance for people who do not have type 1 diabetes. The fact that you can see it numerically on an insulin pump is a clear demonstration of what is occurring in the rest of the population after they fast.
When I asked whether she thought the fasting or the low insulin load diet was most important she said, “I’m not sure which is more important. I think ketones are powerful healers. I feel somewhat euphoric after longer fasts and it gives my body a break. I’m trying to heal and drop my few extra pounds.”
Lucy Smith
We met this gorgeous family at the Type 1 GRIT picnic in Brisbane recently.
The photo below shows Lucy with her hospital food when she was diagnosed with type 1 diabetes. Let’s just say she doesn’t eat like that these days!!
This video of Lucy’s first year with type 1 diabetes is a touching insight into what it’s like for a young person to live with type 1 diabetes.
The Smiths are part of the CGM in the cloud crew [23] who have managed to hack their daughter’s CGM via an Android phone in her backpack that broadcasts her blood glucose level every five minutes to the cloud. The most amazing thing about all this is that it has been created as an aftermarket hack by parents. DEXCOM have rushed the DEXCOM Share to market to keep up with this technology (US only).
Both her parents and Lucy’s teacher wear a pebble watch [24] with the Nightscout app [25] on it that that enables them to see Lucy’s current blood sugar level. If they see it’s going out of range the parents will SMS her teacher who usually advises that she has just done a finger prick and is treating the low.
And it’s working! Though at 4.8%, Lucy’s last HbA1c was outside the target range of 7.8-8.5 for someone her age!
Allison Bleckley Herschede
Alison is one of the admins of the TYPEONEGRIT Facebook group [26] and coaches the nearly one thousand members who have type 1 diabetes and their carers towards achieving better blood sugar control.
When it comes to dealing with protein, Allison practices what some refer to as ‘sugar surfing’ [27] with a bolus given for carbohydrates with the meal. She then watches her CGM and doses with small ‘micro doses’ to bring blood sugar back down if it goes above 93mg/dL (or 5.2mmol/L).
The difference for Allison though between normal ‘sugar surfing’ and her Bernstein-influenced approach is that she keeps her carbohydrates low so the ‘waves’ are more like ripples that are easier to manage.
Allison has developed some guidelines for achieving an excellent HbA1c, including:
Target 4.6mmol/L (i.e. 83mg/dL).
Veggies and protein before carbs.
Multiple injections may be necessary for a high protein meal. Watch the CGM two to three hours post meal.
If female, modify basal rates around monthly cycle.
Take insulin sensitising supplements R-Alpha Lipoic Acid, Biotin, Chromium.
Take one unit bolus upon waking to account for the Dawn Phenomenon. [28]
You can read more about Allison’s journey with type 1 on her My Primal Nest blog including her experience with type 1 diabetes and pregnancy.
Recently she recorded these videos demonstrating how to use a home HbA1c metre…
… and her own surprise at the result is priceless.
In the comments to these videos where she showed that she’d clocked HbA1c of 4.4% she said “…I’m doing this fasting diet thing. Less than 800 cal, 5 days on 2 off. Supposed to mimic the fasting state. Well my insulin needs have greatly dropped. It’s nuts.”
our journey
We are still on the journey but we learned so much from these awesome people!
My wife Monica has done an awesome job implementing the recipes posted on the TYPEONEGRIT Facebook group in our kitchen and has made low carbohydrate cooking a delicious art form. After three decades of HbA1cs of around 8% she is now under 6% and the improvement in quality of life is enormous!
The greatest improvement to date for our family has been following a reduced insulin load diet which means that the insulin dose for food and correcting insulin dose is lower overall and the fluctuation in blood glucose levels are greatly reduced.
After seeing the success of all these people with CGMs, we’re now looking at getting a DEXCOM CGM for Moni, although unfortunately there are no subsidies in Australia so it’s not cheap!
It’s never going to be perfect, but when the correcting doses are smaller you’ve got a better chance of having more stable blood sugars.
The improvements to date have enabled Monica to have the energy to work as a supply teacher pretty much full time while still doing a great job of looking after the family!
When her blood sugars are under control she needs much less sleep, and her mood and energy levels are much better.
It’s always a journey. You don’t arrive. It’s a constant challenge.
Is it worth it? Yes it is! The quality of life for our whole family has seen a massive change and we’re eager to keep it moving forward.
references
[1] https://t1dexchange.org/pages/
[2] https://www.facebook.com/groups/660633730675058/
[3] http://www.diabetes-book.com/
[4] http://www.thelivinlowcarbshow.com/shownotes/7930/683-llvlc-classic-low-carb-diabetes-doctor-richard-bernstein/
[5] https://www.youtube.com/watch?v=WFNGdKSXx64
[6] http://www.diabetes-book.com/
[7] https://www.youtube.com/channel/UCuJ11OJynsvHMsN48LG18Ag
[8] https://www.youtube.com/watch?v=Z80-c0CXYqc
[9] https://www.youtube.com/watch?v=ctaaN9U3sGQ
[10] http://www.cerealkillersmovie.com/
[11] http://www.thenoakesfoundation.org/prof-noakes
[12] http://www.diabetes-low-carb.org/about-ron.html
[13] http://www.lowcarbdownunder.com.au/events/low-carb-brisbane-november-22nd-2014/
[14] https://www.youtube.com/watch?v=8NvFyGGXYiI
[15] http://www.diabetes.co.uk/blood-glucose/honeymoon-phase.html
[16] http://livinlavidalowcarb.com/blog/the-llvlc-show-episode-831-dave-dikeman-is-a-10-year-old-type-1-diabetic-on-fire-for-low-carb-living/22923
[17] https://myglu.org/articles/our-journey-with-the-low-carb-diet-and-the-manual-artificial-pancreas
[18] https://www.facebook.com/groups/660633730675058/
[19] https://www.youtube.com/channel/UCuJ11OJynsvHMsN48LG18Ag
[20] http://www.lowcarbdownunder.com.au/events/low-carb-brisbane-november-22nd-2014/
[21] http://www.dexcom.com/au
[22] http://diabeticalien.blogspot.com.au/2015/04/preventing-protein-spike.html
[23] https://www.facebook.com/groups/cgminthecloud/
[24] https://getpebble.com/#/.0kvx26:Fuqt
[25] http://www.nightscout.info/
[26] https://www.facebook.com/groups/660633730675058/
[27] http://stephenpondermd.com/
[28] https://en.wikipedia.org/wiki/Dawn_phenomenon