Successfully Raising a Child with Diabetes on a Low Carb Diet: A Four Year Update

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When I last interviewed Ekaterina Lochoshvili-Griffin, in 2014, her son Alexander was still honeymooning after his diagnosis with type 1 diabetes more than three years before. When we first talked, Alexander was using a little insulin—a ½ unit of short-acting insulin here or there along with a few units of Lantus—but he still had working beta cells, which would often bring his blood glucose down to normal range without outside help. Alexander mostly managed his condition by eating low carb and getting lots of exercise. Griffin lived in fear of the day when his honeymoon would end, and when he would become fully insulin dependent.

A lot has changed since we last spoke. Alexander is now insulin dependent, but contrary to Griffin’s fears, the change has gone smoothly. And Alexander’s example—the fact that he is growing and thriving while eating low carb—has helped inspire others to try the same thing for their children. One of those parents was RD Dikeman, a founder TypeOneGrit, a Facebook group where people support each other in eating very low carb in an effort to achieve normal blood glucose levels. Both Alexander and RD Dikeman’s son David were part of a study of 316 members of TypeOneGrit  (131 of them children) that appeared in the May 2018 issue of Pediatrics. The study showed that respondents had a mean HbA1c of 5.67%, and that children were slightly above average on measures of growth—refuting a refrain that parents of T1D kids often hear, that children need to eat a significant amount of carbs to grow.

After the study came out, I checked back in with Ekaterina to see how Alexander is doing, and how things have evolved for him over the years, after his honeymoon waned.

This interview has been condensed and edited for clarity.

Richard David (RD) Dikeman, one of the founders of TypeOneGrit, gave you credit as one of the people who sent him down the low-carb path once his son was diagnosed.

I knew I was part of it, but I never thought of myself as an inspiration for the group. This group is very strict, very enthusiastic. I’m a part of it, but I’m more liberal. I was sitting on the train, coming home with the children, and I get this message from RD saying: “You were right all the time. You planted a seed, Ekaterina.” And I thought, Wow, perhaps, in a way I did. After his son was diagnosed, RD found the study on Alexander (though it didn’t mention his name anywhere) and the Sweet Life article. People are reading the Sweet Life article within a matter of hours of being admitted to the hospital. It’s amazing how online media works.

The reason RD and others started to believe in this diet is they got the same results. The focus for us was eating low carb so Alexander could be insulin free, but we realized there are people who aren’t going to be insulin free, but they could still benefit. It’s not a competition in terms of who can hold the honeymoon longer; this diet is even more important when you don’t have a honeymoon. Then it is relevant for more people. If you’re afraid that your child is not growing, then you see someone who has been low carb for 8 years who is growing and is normal. Alexander excels in school and he’s a competitive swimmer; he’s doing great, and he’s happy.

Alexander

What was the study like for Alexander and for you?

I’m not sure he even knew he was in the study, because we just had to collect information. We were very happy and motivated to do that, because of all this resistance we’d been getting from other people to the low-carb diet. They’d say: “Oh, a study hasn’t been done. We don’t have any data.” I knew that there were people who were doing great; this study was a fantastic opportunity to validate that information. Now this study has shown that there are 300 people who are benefiting from this way of eating, and it has motivated researchers to get their act together and do some bigger trials. The problem has always been that doctors are complaining that they can’t motivate people to try this way of eating. But how are you going to motivate people if they are told that going low carb is dangerous? Of course there’s some risk associated with it because we really don’t know, so that’s why, to be on the safe side, doctors just follow whatever is the practice.

 

But it seems like one of the things the study says is that there’s less risk when you’re on this diet.

Yes, there’s less risk of hypoglycemia, and less risk of getting high blood sugar-related complications. But on the other hand, when you are replacing these micronutrients with something else, we just don’t know.  Perhaps for the healthy child you don’t go for this extreme way, but when you already have this disease you have a different perspective, and you might go for whatever makes it easier on a daily basis.

 

Does Alexander follow pretty closely the Dr. Bernstein recommendation of 30 carbs a day?

No. I never count carbs, but whatever he eats, he’s eating low carb. His way of eating doesn’t spike his blood sugar so he takes insulin according to what he sees on his Freestyle Libre, and that’s what navigates us. For breakfast he can have something like salmon and eggs with cheese, or cheese and tomatoes. Today he had some low-carb pancakes with yogurt and cream cheese and low-carb bread. Sometimes he eats fruit, because his blood sugar is on its way down. He eats whatever he wants to eat, but no sugar and no regular bread.

 

Then he treats his blood sugar after he eats?

 Yes, certain things we kind of know that two units is what he probably needs, and then if he requires more he can give it. That gives us quite a bit of flexibility.

 

That’s a nice way to do it. It sounds like it’s taking a lot of the stress out of it because it’s just the way you’re eating—you don’t need to worry about it.

Yeah, now he’s going to parties himself, and he knows what he can eat.  He’ll eat vegetables and meat, and when it comes to dessert, there’s often an option to get a cheese plate, and that’s what he gets. For ice cream, in Denmark we have a nice choice of sugar free options. They affect your blood sugar, but it means he can eat a hundred grams and take only one unit.

 

It sounds like he’s totally on board with it.

Oh yeah, there’s no way he’s going to change, because he knows that he’s in charge of his blood sugar, at least during the day time. And he really doesn’t want to check with his Libre and have to correct all the time. He is more comfortable when he is in charge. It’s not that we put pressure on him, but he feels like this is one of the things that’s his responsibility, and food is his additional tool to keep it right. He feels he’s a success, and that’s what’s important. Another thing is, he’s a competitive swimmer, and swims something like six times a week. And his blood sugar is very stable when he swims. It’s important that he not worry when he jumps into the water and swims for two hours. He’s fine. He uses a regular short-acting insulin (Actrapid) a few hours before his swimming practice, and he does not have to cover a low carb snack with any type of insulin right before swimming. If he feels low, a little shaky, he gets out and eats a half a banana or chocolate or something, then jumps back in. I think when you have more insulin than what I described, it gives you such a severe reaction to the low, that then it mentally affects your well-being. He feels that he’s in charge, and he’s still controlling it, and this is what is important.

Also, when he goes out, he knows that he has very little active insulin, and nothing drastic is going to happen. This is quite powerful. Another thing is that he has a huge choice of food he can eat these days.  He is enjoying food, he eats a lot, especially now, when he’s growing and exercising.

 

I think there’s only a certain type of person who would follow this way of eating as closely as the TypeOneGrit people do. I feel like you have a different and slightly more relaxed approach.

Yes. I’m open to saying that we are not Grit perfect. Alexander’s A1C is not 4.6 or something like that. There have been sixes in there. Despite that, the group is a great tool and very inspirational. There are doctors and scientists there: people who really follow the literature. It’s really high-level professional advice. It’s not that I don’t believe that there’s a benefit to low carb and low A1Cs. My doctor believes that if Alexander’s A1C is 7.5 or something it’s good enough, but I don’t believe that’s good enough. But the thing is, because we don’t have Dexcom, we cannot do any better than what we do. I think it’s important that he has freedom and that he’s swimming, so I cannot just correct when he’s 6 or 7 [108 or 126] and he’s getting into the water. Also I don’t want to make it too tough on Alexander, saying he has to always be between 5 and 4 [90 and 72]. We can’t do that. I try to balance the lifestyle. It’s very individual. I think Grit is a place of excellence, and I am happy to help people the way I can. But I’m not someone who can claim anything. RD is fighting, he’s very passionate. Compared to him I’m sitting in the shade and sharing my recipes. My story was read because it happened to be that Alexander went into this four-year remission, and then his case study attracted attention.

Type One Grit

TypeOneGrit is also important because it offers a support, a community where you can encourage each other, and you really need that because this is so hard.

Yes. The technology has helped, but it’s not at the level where you can have flexibility with food. If you’re used to getting more satisfaction from your food then it will be hard to switch to this way of eating. And that’s why I’m afraid if people switch back and forth from regular pasta to low-carb pasta, they’re not going to like it. We’re growing up on carbs—apples, cookies, smoothies, things like that. We get carbs as our main source of food. And the quicker you unlearn, the quicker you teach your body that you have to be satisfied with some other ingredient, the better. It’s not that blood sugar control would suffer so much if you suddenly ate one slice of bread, but your taste buds, your perception of things, can be very difficult. I tried once to give Alexander some regular ice cream, and oh my God, that was a roller coaster. So we said, no way, the way we eat is much better.

 

It’s good that he’s on board with that too. That’s the essential part.

I was almost a little scared when he became a teenager, about how that would affect his daily choices. If he comes one day and says he wants to eat pizza with his friends, there’s nothing you can do about it. But so far he’s enjoying his own pizza, and he’s big enough to make his own. He knows that when he eats his pizza, he’s stable and doesn’t have to worry about his blood sugar.

 

When we last talked, he was still honeymooning and using very little insulin. And you were nervous about insulin—you didn’t want him to have to use it.

Yes, the thing is that he was young. What I can say is that for four years he went to school and he didn’t have to have his glucometer with him. He didn’t have to check his blood sugar at school. What happened is that he became bigger and he started using the Freestyle Libre. He was using a little bit of insulin before, but he really started using it when Libre came, although for the first couple years with it he didn’t need any insulin at night, not even basal insulin. He’d have his dinner at 5 pm, then a late swim practice, then go to bed, and he was fine. Now we use insulin, but what I see from other type 1 swimmers is that it’s nowhere close to what they use. We now pay much more attention, give more corrections, but it’s in order to maintain his blood sugar in the non-diabetes range, we’re not doing it to fight super high numbers. We met a couple of swimmers who have type 1 but they eat normal food. When I showed them Alexander’s Libre graph, they couldn’t believe it; they thought it was my Libre I was showing them. Most times he’s between 4 and 5 [72-90] and 4 and 6 [72-108]. I didn’t know that when I started insulin he would still be able to stay in that range.

 

So you had to switch the way you thought about it a bit.

Yes. In a way, now that we are using insulin and know how to use it, it gave us freedom. It’s another freedom of choice. If he’s 8, which is 160, we don’t have to wait until he comes down by himself. I can give insulin. I know the safe dose, and I have Libre so I can dose it safely. Just talk about today.  He went to school, and he was between like 4 and 7 [72-126]. For lunch, he took 2 units. Right now he is 4.1 which is like 74. He will eat something—like tomatoes and some bread or avocado or something—and he will go to training. He won’t need insulin, and he will be stable until he finishes at six o’clock. But it could be that because he hasn’t exercised in a few days, he could go up to 8 [144], so I’ll tell him to take a half unit, and that’s it, it’s done. We don’t think about it any more. But if he had eaten a high carb meal with a lot of insulin, then I would be really freaking out. What do others do? They keep their children high, so there’s no risk of lows. And you train so much that there are hours when you’re high.

 

About how much insulin does Alexander use these days?

He’s growing, and he takes quite a lot of insulin just to cover his protein. Normally for breakfast he might take 10 units if he spreads it around. I’ve learned that as the disease progresses you need insulin not just to cover what you eat, but because of the glucagon your body is producing. When you produce insulin from your pancreas, a signal is sent to your liver to stop producing glucagon.  But when you get insulin from the outside, sometimes your blood sugar rises not only from the food you are eating but from your liver dumping sugar. In healthy people, as soon as the beta cell produces insulin, it tells the cell next to it, the alpha cell, to shut off.  But when you give insulin from outside, it takes a while for the alpha cell to realize you don’t have to produce glucagon. So that’s why after several years of having diabetes, you need insulin to check your glucose production. So even if you’re not eating many carbs, you do take quite a bit of insulin.  

 

What type of insulin does he use?

We’ve started using regular insulin, which takes a longer time to work. But for corrections we use fast-acting insulin. Yesterday he had this low-carb burger, with quite a bit of meat in it. He took five units of regular insulin and he was fine, he didn’t need anything. But if I see that he’s rising I can use a faster insulin.

 

Does he use pens?

Yes, he uses pens. He still prefers those to a pump, because of the swimming.

 

How much basal is he on?

We use Tresiba; that’s a new basal insulin. In the morning we do 14 and at night we do 6. But, when he’s exercising a few days in a row, then he needs 12 in the morning and 4 at night. And sometimes nothing at night. This is 48-hour insulin, but the reason I divide it is then you have flexibility.

 

I remember when we talked before that there were some questions about whether or not Alexander really had type 1 diabetes, and whether that was the reason for his long honeymoon. But I know that part of the TypeOneGrit study was that you needed to prove that your child has type one.

Yes, he has the autoantibody, and he takes insulin. It’s very classical type one. The thing is, I caught it a little earlier. Alexander’s doctor told us: “You did so many things, I don’t know what works! I told you gluten free, now you did low carb, and the exercise.” (Intensive exercise has been shown in adults to preserve the honeymoon. ) And I said: I did it for my child.

The first year he could tolerate 120 grams of carbs, and then he could tolerate 80, then 40. Now he needs insulin. If he had been eating normally, I wouldn’t have seen the difference in the number of carbs he could tolerate. Other people have followed Alexander’s diet and they’ve been insulin free for 3 years, but they’re grown ups. I know one person, the son of my good friend, who went on a low-carb diet, and not an incredibly strict one, and was insulin free for 3 years. Now it’s been 5 years, and he takes insulin every now and then. What’s interesting is that the end of the honeymoon is quite similar for all of us. It’s type one diabetes in slow motion.

 

It seems like it’s a more gentle path into the disease.

It also depends on how many autoantibodies you have, because it’s been proven that type 1 is not the exact same disease for everyone. For some people the process is faster, for some it’s slower. For example, RD’s son was in ketoacidosis at diagnosis, so there’s no chance he was going to get a honeymoon. And he is still using so much more insulin than Alexander.  Alexander still needs less basal insulin than other people on low carb, and we know that after 50 years some people still have insulin production. It’s not enough production to be insulin independent, but it does have some clinical significance. Having your own has some protective effects. In Alexander’s case, he only had one autoantibody, and not five. So it means that his process was slower. But if he were eating normal high carb food, you wouldn’t see the difference. 

 

It sounds like you know a lot of people in Denmark but also around the world who find you and come to you for advice.

Yes, and I often say that I’m not in a position to give advice, but what I know is, Alexander is doing low carb, and he’s doing fine. I know a group of people who are doing low carb, and they’re doing fine. Here’s the group’s name, and I advise you to join them. And some of them do and some of them don’t.  I also tell people to go through their doctors, though I know that some endocrinologists are more supportive than others. I myself check everything with a doctor.

 

In our last interview, you talked about how Alexander had more endurance in swimming than his peers. Is that still the case?

I have to say, his energy level when he does long term training is much better than anyone else’s on his team. He has proven it now numerous times.  When they do these high-level training camps where they do training in the morning and then they have to push until they die in the evening, the only person who outlives everybody is Alexander. But this is in line with what the low-carb researchers are saying. They’re saying that when you’re a fatburner, you can do so much more. It’s probably not that effective in the short distances, but he is so adapted to burning his fat that in short distances he’s fine. And anyway, if someone tells me that his time at the short distances would improve if he went high carb, I’m not going to change it. He’s not going to change it. Because we won’t be able to keep him right.

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