How a Low Carb Diet Can Benefit Children with Type 1 Diabetes

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.

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.

What other lessons do you take from the study?

Ultimately, what the study really is to me as a physicist is a study of rare events. The way you do fundamental discoveries in physics is you detect rare events and then you categorize them and try to discover if there’s a phenomenon that’s causing these rare events. And here you have a study of hundreds of people across all age groups and genders. They’re all achieving roughly the same result, which is a very rare result. If you look at the T1D Exchange data, one in 250 or something like that are getting A1Cs of  5.5. And then you say, what are these people all doing? And it turns out they’re all doing the same thing: they’re all eating a low carb diet. The onus now is on the standard practitioners to find a group of 500 folks who are not doing that, but achieving the same sort of result. And I don’t think it’s possible. It’s not possible safely over the long term.

In terms of the concerns you’re trying to address with the study, we talked about whether kids can grow normally. Were there other concerns you were trying to address?

Well, the big concern, traditionally, has been cholesterol as an agent of heart disease. This is what Nina Teicholz described in The Big Fat Surprise: this turn we took in the 1970s and 1980s towards a low fat, high carb diet, because of faulty research that eating fat is what causes heart disease. Everyone has suffered from that approach. Obesity is up; type 2 diabetes is up; all these modern diseases that we’d never heard of when we were kids, like Alzheimers,  are now legion. And it all turns out to be due to this low fat, high carb stuff. And type 1 kids got put on the ride.

The point is that the study had to address not just the stature issue but the cholesterol issue. And what we found is that types of lipid profiles were pretty uniform: high HDL and low tri-glycerides, and that tri-glyceride to HDL ratio is a great predictor of future heart disease. But the study also predicts the type of LDL, which is sort of called the bad cholesterol, and that type is the benign type, which is the large fluffly LDL. The lipids were an outstanding part of the findings, because combined with the A1C, which we know is the number 1 predictor of heart disease in type 1 diabetics, the lipid profiles were also exceptional. So if your endocrinologist is concerned about your future risk of heart disease because you’re eating eggs for breakfast rather than Trix cereal, now you have some documentation you can push back with. There was also a quality of life finding, which was that people were happy to get off the blood sugar roller coaster, and there was a lot of satisfaction from adults who had been on it for decades. When you’re older and you’ve been running high blood sugars for a long time, you’re very likely to be suffering from peripheral neuropathies. Those sorts of things respond really quickly to normal blood sugars. So people who do switch who are older have a new lease on life, because they start feeling so much better. People weren’t  complaining, “Oh I miss my Kroger muffin every morning.” They were more focused on how they felt.

I guess that’s how Dr. Bernstein felt when he created this diet.

Look, I congratulated Dr. Bernstein on this and he said he’d been trying to do this for 30 years.  He showed me an article that was rejected from the 1980s that was very similar to the article we just published.

What is your hope for what will happen now that this study has been published?

If I could wish one wish, it would be that at diagnosis, the endocrinologist would say:  the optimal way forward, and it may not be easy for your family, but the optimal way forward for your child is a low carb, high protein diet. Because you’ll be able to get the best blood sugars, you’ll still get all the nutrients your child needs, and if you learn how to use insulin properly, it is even possible for your child to be healthier than his non-diabetic friends. And that’s what I’ve seen with Dave. He has been able to use the Bernstein approach, and I believe he’s healthier than the majority of his non-diabetic friends. That’s what I would like in the future, if I could wave my magic wand; that’s what I’d like to hear an endocrinologist tell a newly diagnosed family. This is an option, and as far as blood sugar control goes, it’s the best option

By its nature, the study was done on a very self-selecting group, so how would you apply its findings to the larger world of diabetes, both type 1 and type 2?

I don’t want to say the word “laboratory,” but the situation for a type 1 is acute, compared to non-diabetics and type 2s. If you find a type 1 who has normalized their blood sugars – truly normalized their blood sugars, not 5.9% but under 5% – who is doing that safely and not experiencing a lot of crazy ups and downs, then their diet is likely optimal. The one lesson from 20^thcentury nutrition and modern disease is that our bodies are just not capable of metabolizing on a daily basis rapid acting carbohydrates. It’s not the food we evolved eating; the suite of modern diseases all look like they’re originating from high carb diets and obesity.

But how do you apply this in a non-ideal world?

It’s not easy. Because you are going to be put into situations where you have to say no to hyper-palatable food. Putting Dave aside, I used to find myself having to say no to food all the time. Now I’m 100% committed, so I don’t have that problem anymore—it doesn’t exist for me. And that’s the problem, to get it to the point where you’re 100% committed. If you’re 99% committed then you always have to ask: should I or shouldn’t I? Is today a special day or not? But if you’re 100%, what do you do? You still want to have a piece of cake on your birthday, and then you have these Carolyn Ketchum recipes, and they’re really good. Her Boston cream poke cake is amazing. You do little tricks: Dave will strip the cheese off the pizza and eat that, or eat the hot dog without the bun. But he’s not an evangelist by any means; he just wants to lay low.

Well, I guess what you’re saying is, this is where the name of the group comes from, TypeOneGrit: this is hard, and you have to make a 100% commitment and just do it.

Right, it is hard, especially when you’re just getting started.  If you ask Bernstein, “What is your biggest problem?” he’ll say, “It’s the cravings the patients have, fighting the cravings.” But what happens is, after a month or two, they go away. He advises going cold turkey because if you try to slowly wean off, you’ll never defeat the cravings.

What is the next step  in terms of what you’re trying to do, in terms of the research and getting this established?

I don’t have a long-term answer. The short-term answer is, since the paper has come out I’ve actually had to take vacation from work because the amount of people who are texting the group and joining our public page is all-time-demand-high. There’s been a huge spike. For example, I talked to a dad yesterday. His son was diagnosed at 16 months and he’s 11 years old now. The dad became very angry and agitated, telling me that kids need carbs for energy. Since we have sons the same age, I just explained to him, calmly–because I understand where his anger’s coming from, and it wasn’t towards me–I explained to him what Dave is doing. And we ended up having a rational conversation, and he now has links to Diabetes University  and a copy of the study and the New York Times article, and all the public comments to it. And he’s starting to digest.

My goal is to get the message out, because I don’t want people to feel that they need to wait to try a low-carb diet.

Will there be more studies along these lines? Maybe longer term ones, or maybe a different type of structure for the study?

I would say the purpose of the Grit group is not to be in studies. This was a tremendous amount of work and was very emotional work, for me at least. It took a lot of time, and a lot of effort and energy. To me it was a one-time thing. My takeaway from the paper is that I’m not interested in doing a ten-year, full-level-of-effort study. That would be impossible. The next step for me is to continue to advocate the result.

Katie Bacon

Katie Bacon is a writer and editor based in Boston. Her daughter, Bisi, was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie worked as an editor at The Atlantic, and her writing has appeared in The New York Times, The Boston Globe, and other publications. Katie and her husband, Mark, have two children—Bisi and her older brother, Jamie.

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Katie Bacon

Katie Bacon is a writer and editor based in Boston. Her daughter, Bisi, was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie worked as an editor at The Atlantic, and her writing has appeared in The New York Times, The Boston Globe, and other publications. Katie and her husband, Mark, have two children—Bisi and her older brother, Jamie.