For the past four years, the people in the Facebook group TypeOneGrit have been working to help each other achieve normal blood sugars by following a very strict diet described in Dr. Bernstein’s Diabetes Solution. Essentially, people on the diet are limited to eating a total of about 30 carbs a day; with no grains, no starch, no sugar, and no fruit. There’s no doubt that the diet stabilizes blood sugar: I’ve seen it in the even CGM graphs that people post on the page to motivate each other; and I’ve seen it with my daughter Bisi, who has type 1 diabetes, when we give her what my husband and I call magic waffles, and other low carb meals, and her CGM shows a beautiful straight line. (Though for our family—and I think this may be true of many—eating low carb all the time is not sustainable, since it resulted in big battles over every meal. Our compromise has been eating low carb dinners, and often breakfasts. It’s not ideal, but it’s the best we can do for the time being.) Despite these stable results, endocrinologists and nutritionists often tell parents that children need carbs for growth and brain development, or that eating low carb could result in dangerous low blood sugars, or that there’s not evidence that a low carb diet is healthy over the long term.
A study released earlier this month in the May issue of Pediatrics helps to address these concerns. Overseen by a group of doctors, scientists, and researchers, some of them with personal connections to type 1 diabetes, the observational study looked at the glycemic control of 316 people, 131 of them children, who are part of TypeOneGrit and eat a very low carb diet. The results showed that participants were able to achieve “exceptional glycemic control”—respondents reported a mean A1c of 5.67%, with lower than average rates of hypoglycemia and hospitalizations for diabetes-related causes. Meanwhile, children’s mean heights were “modestly above average for age and sex.”
Last week, I spoke with Richard David (RD) Dikeman— the main force behind TypeOneGrit—about the study, in which RD’s 15-year-old son, Dave, was a participant. We also talked about the radical changes in the field of diabetes management that RD is hoping to see, and how this study may lay the groundwork.
(This interview has been condensed and edited for clarity.)
Tell me about this study and how it came to be.
It took a long time for this to happen. You can imagine that I’m approached a lot by researchers. But we wanted to have the right team. The people we had on board here, you know they were going to do everything right. This wasn’t take five people and have a quick interview and try to get into a substandard journal. All of the participants had their medical data verified by physician records. And we had to prove that all the participants had type 1 diabetes in the first place. To me that seemed kind of absurd, but to get into a journal like Pediatrics, you just had to do it. Also, a good subset of the authors understand and/or have type 1. That is hugely important, because you can’t understand just low carb; you need to understand how insulin works with low carb.
What was the genesis of this? How did your family decide to go low carb in the first place? How was the seed planted that you could do low carb with kids, when that goes against the typical recommendations when a child is diagnosed?
Yeah, when Dave was diagnosed in 2013, if you Googled low carb, type 1, which we did, you got an Amazon link to Bernstein’s book, but there was scant information, especially in terms of kids. Ekaterina Lochoshvili-Griffin was probably the only resource you could find, and I think your interview with her was one of the things I found. Now you can find a lot more, but back then there was nobody. And she was especially speaking out about it.
(This interview has been condensed and edited for clarity.)
Tell me about this study and how it came to be.
It took a long time for this to happen. You can imagine that I’m approached a lot by researchers. But we wanted to have the right team. The people we had on board here, you know they were going to do everything right. This wasn’t take five people and have a quick interview and try to get into a substandard journal. All of the participants had their medical data verified by physician records. And we had to prove that all the participants had type 1 diabetes in the first place. To me that seemed kind of absurd, but to get into a journal like Pediatrics, you just had to do it. Also, a good subset of the authors understand and/or have type 1. That is hugely important, because you can’t understand just low carb; you need to understand how insulin works with low carb.
What was the genesis of this? How did your family decide to go low carb in the first place? How was the seed planted that you could do low carb with kids, when that goes against the typical recommendations when a child is diagnosed?
Yeah, when Dave was diagnosed in 2013, if you Googled low carb, type 1, which we did, you got an Amazon link to Bernstein’s book, but there was scant information, especially in terms of kids. Ekaterina Lochoshvili-Griffin was probably the only resource you could find, and I think your interview with her was one of the things I found. Now you can find a lot more, but back then there was nobody. And she was especially speaking out about it.
What I remember is that people would say, Oh, you can’t put kids on low carb diets because it will stunt their growth, and her work with her son, Alexander, was showing that that wasn’t the case.
Right. Growth was one of the things that was important to track in the study. If you are looking into low carb and a doctor tells you that your child needs carbs for growth and energy, that comment is going to stop people in their tracks permanently, because it seems so true.
Our doctor said the same thing to us. When Dave was in the hospital in DKA, the doctor explained diabetes to him by saying, insulin makes your blood sugar go down and carbs make it go up, and you need to find the balance, or you’ll lose your legs and go blind—which he actually said. And Dave said, “Well, I won’t eat carbs then.” We all laughed at Dave, because you need carbs for growth and energy, right? But in reality, that’s not correct. What you need for growth is protein and normal blood sugars. And that’s what the diet that people are following in the group revolves around.
What did you find in the study?
What we found was that indeed there are no adverse effects to growth from the high protein diet with normal blood sugars. We know that kids with the sort of blood sugars which on average are being established by the ADA diet run into all kinds of problems in childhood; for instance, differentiated white-grey matter in the brain, and that’s been established by a longitudinal study. The struggle now is for the diabetes associations and the physicians to come to terms with what really amounts to math, and how to properly educate people and themselves. This is a mathematical statement; the paper proves that: the people who had the lowest carbohydrate intake in the group were the people who had the best A1Cs, and the people who strayed from the Bernstein 30 grams, their blood sugars were higher.
What is your hope for what this study will accomplish?
Well, I have two hopes. The first hope is, if you look at the study, people are getting a lot of pushback from their doctors if they tell them they’re having their child go low carb. The world of food is so bizarre in the West right now that people are legitimately fearful of having doctors report them to child protective services for feeding their kids a diet of meat and vegetables, which is so absurd, because when we were kids, grandma was rightly chasing you around saying eat your meat and vegetables. And now the people who most need to follow that advice are fearful that their doctors are going to call CPS on them.
Has that happened to people?
Sure, people have been threatened with that. It’s a very common topic in the group.
So the first thing I want to do is give people a piece of paper with some real data on it that’s been published in a major journal that they can take to their endocrinologist and say, “Hey, step off.”
The second thing is, there are some physicians out there who want to do the right thing and I think are totally hamstrung by the ADA guidelines and fearful of giving people advice which differs from the guidelines, which obviously aren’t working. So this paper is, I think, a step in the right direction to change the guidelines and give doctors that ability. The goal is not to force people to adopt a certain diet: it’s just to tell the truth. We want to empower people who are following the diet; give people information who are newly diagnosed and want to get off the roller coaster; and to start instructing the physicians and the diabetes associations that they need to be looking at alternative methods.
Now for any parent of a child who’s diagnosed who does some research, this study will likely pop up in Google. So from now on, people are going to be asking these questions much more commonly than they were, and finding this method.
There’s another study by Joslin that shows that over the past decade we’ve seen a skyrocketing of obesity in kids with type 1. Type 1 kids are now developing double diabetes: insulin resistance and type 1. The head researcher at Joslin, named Osama Hamdi, attributes it to the modern t1d culture of eat what you want and take insulin. He’s saying that people have optimized their therapy with pumps and CGM. That refrain of eat what you want and bolus is the standard of care right now. And that’s what you hear from newly diagnosed people. Look, here you have these two studies: this disaster that’s happening with standard care, and then these Grit kids who are getting damn near normal blood sugars.
https://asweetlife.org/how-a-low-carb-diet-can-benefit-children-with-type-1-diabetes/?utm_source=ASweetLife.org+List&utm_campaign=5800ab3d27-ASweetLife+Weekly+Update++-+Nov.+14%2C+2017_COPY_01&utm_medium=email&utm_term=0_5125b14cf8-5800ab3d27-413392997
Right. Growth was one of the things that was important to track in the study. If you are looking into low carb and a doctor tells you that your child needs carbs for growth and energy, that comment is going to stop people in their tracks permanently, because it seems so true.
Our doctor said the same thing to us. When Dave was in the hospital in DKA, the doctor explained diabetes to him by saying, insulin makes your blood sugar go down and carbs make it go up, and you need to find the balance, or you’ll lose your legs and go blind—which he actually said. And Dave said, “Well, I won’t eat carbs then.” We all laughed at Dave, because you need carbs for growth and energy, right? But in reality, that’s not correct. What you need for growth is protein and normal blood sugars. And that’s what the diet that people are following in the group revolves around.
What did you find in the study?
What we found was that indeed there are no adverse effects to growth from the high protein diet with normal blood sugars. We know that kids with the sort of blood sugars which on average are being established by the ADA diet run into all kinds of problems in childhood; for instance, differentiated white-grey matter in the brain, and that’s been established by a longitudinal study. The struggle now is for the diabetes associations and the physicians to come to terms with what really amounts to math, and how to properly educate people and themselves. This is a mathematical statement; the paper proves that: the people who had the lowest carbohydrate intake in the group were the people who had the best A1Cs, and the people who strayed from the Bernstein 30 grams, their blood sugars were higher.
What is your hope for what this study will accomplish?
Well, I have two hopes. The first hope is, if you look at the study, people are getting a lot of pushback from their doctors if they tell them they’re having their child go low carb. The world of food is so bizarre in the West right now that people are legitimately fearful of having doctors report them to child protective services for feeding their kids a diet of meat and vegetables, which is so absurd, because when we were kids, grandma was rightly chasing you around saying eat your meat and vegetables. And now the people who most need to follow that advice are fearful that their doctors are going to call CPS on them.
Has that happened to people?
Sure, people have been threatened with that. It’s a very common topic in the group.
So the first thing I want to do is give people a piece of paper with some real data on it that’s been published in a major journal that they can take to their endocrinologist and say, “Hey, step off.”
The second thing is, there are some physicians out there who want to do the right thing and I think are totally hamstrung by the ADA guidelines and fearful of giving people advice which differs from the guidelines, which obviously aren’t working. So this paper is, I think, a step in the right direction to change the guidelines and give doctors that ability. The goal is not to force people to adopt a certain diet: it’s just to tell the truth. We want to empower people who are following the diet; give people information who are newly diagnosed and want to get off the roller coaster; and to start instructing the physicians and the diabetes associations that they need to be looking at alternative methods.
Now for any parent of a child who’s diagnosed who does some research, this study will likely pop up in Google. So from now on, people are going to be asking these questions much more commonly than they were, and finding this method.
There’s another study by Joslin that shows that over the past decade we’ve seen a skyrocketing of obesity in kids with type 1. Type 1 kids are now developing double diabetes: insulin resistance and type 1. The head researcher at Joslin, named Osama Hamdi, attributes it to the modern t1d culture of eat what you want and take insulin. He’s saying that people have optimized their therapy with pumps and CGM. That refrain of eat what you want and bolus is the standard of care right now. And that’s what you hear from newly diagnosed people. Look, here you have these two studies: this disaster that’s happening with standard care, and then these Grit kids who are getting damn near normal blood sugars.
https://asweetlife.org/how-a-low-carb-diet-can-benefit-children-with-type-1-diabetes/?utm_source=ASweetLife.org+List&utm_campaign=5800ab3d27-ASweetLife+Weekly+Update++-+Nov.+14%2C+2017_COPY_01&utm_medium=email&utm_term=0_5125b14cf8-5800ab3d27-413392997
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