The Three Year Diabetes Honeymoon – Part 2

For Alexander Griffin, the path to a long diabetes honeymoon has meant lots of exercise, no gluten, and not many carbs

This interview  is part 2 of The Three Year Diabetes Honeymoon.  For part one, see here.

Tell me about Alexander and how he ended up on the diet that he’s on.

He was diagnosed with type 1 diabetes in May of 2010, when he was five years old, and then after about five weeks, he went into remission himself. The remission was described by the nurses at the hospital as something that was problematic, something to look forward to when it was over.

When I called his doctors and told them he hadn’t been taking insulin for a couple of weeks, they said, give him a half unit of Lantus anyway, because it is very important for him psychologically. He is only five years old, the honeymoon will last probably only a couple of weeks, they told me, and for him it will be very hard emotionally to get back on insulin. But I couldn’t do that because even if I gave him just a half unit, he would still go low.

We enjoyed this freedom from insulin; we realized we didn’t have to worry about certain things. Then I started reading a lot about diabetes. I’m a biologist by education, and I realized that this remission was important. I knew there was no cure, but I saw that it was important to keep his beta cells active. All the trials I read about were about preserving the beta cells. That was what I was hanging on. The honeymoon was giving us freedom, but it was also medically important.

I went to Alexander’s doctor, Jannet Svensson, to ask if there was anything I could do. I remember exactly what she told me. She said, we don’t have anything, but if you want to do something, we think that going gluten free can actually help to preserve insulin production. I came home, and I read about gluten, and looked at what Alexander had been eating for five and a half years, and I thought, ok, if gluten is to be blamed, he was eating a lot of gluten. It’s not revolutionary that gluten is linked with type 1 diabetes. The idea comes from the Bartholin Institute and Dr. Karsten Buschard; his whole career at the University of Copenhagen has been about gluten and type 1 diabetes. He was doing his trials on lab rats.

So at that point, I started checking Alexander after he’d eat, and decided that whatever was raising his blood sugar wasn’t good for him and I tried to replace it and reduce it. Alexander’s doctor told me I should aim for a low fat and high carbohydrate diet, but this didn’t make sense to me. So I started coming up with things myself; I read that omega threes were good; I would substitute one fat for another. I don’t give him butter; I think it’s better for him to get fats from nuts. I took milk out of his diet, after reading a study hypothesizing that the high rate of type 1 diabetes in Sardinia has to do with a bacterium similar to tuberculosis that’s endemic to the milk there.

So it sounds like Alexander’s diet as it evolved was very much directed by you, not by the doctors treating him for his diabetes?

Doctors didn’t know about everything I was finding out, because they don’t have time to do what I did. They have their jobs, and they are very good at what they do, but they don’t have the surplus time to sit and read and experiment. They definitely cannot experiment with their patients. But this was my own child. I did it in a safe way. I was taking him into the doctor to get all of his checks. I was insisting on extra tests, figuring that he’s eating a different diet, maybe he needs different tests.

In the beginning, I could use many more things, but now that his tolerance of carbs is lower I’m down to more basic things. But calorie-wise and nutrition-wise, it is still quite rich.

So the number of carbs he’s able to eat without needing insulin is going down, but more slowly than usually happens for someone with type 1 diabetes? 

Yes. It has been such a slow decrease, and the low-carb diet helps very much, because if he doesn’t eat something high-glycemic, he actually never gets blood sugar spikes, and his own insulin can help bring his blood sugar down. It takes the pressure off his pancreas.

The low–carb approach for type 1 diabetes is not my idea at all. Doctor Richard Bernstein, he’s an icon for most people. But when I read about him, I didn’t think I would follow him. First of all, when he started this extreme diet, he was in his forties, and he had already had diabetes for twenty years. So for him, tomatoes were out, carrots were out. No gluten, no healthy fats. He just eats bacon and eggs and things like that. And I said, come on, how is my child supposed to grow on that? He’s a child. I’m happy that if everyone is eating pizza, Alexander’s eating low-carb pizza. But if everyone’s eating pizza and he’s eating bacon, that’s not okay.

Could you walk me through a typical day for Alexander?

For the first year or two, he would have blueberries and oatmeal for breakfast; some apple slices and almonds for snack. For lunch 2 pieces of gluten-free bread, some carrots and cucumber slices and cheese. When I picked him up from school, depending on his number I would give him a low-carb bar, like oatmeal with chocolate and a sugar substitute. But if his number were 7 or something [126], then we would go to the swimming pool and he would get it afterwards. Even today, when I check him after meals and he’s 8 [144], an hour later he’s 7. He’s slow, but his pancreas still works. I noticed that when he swims, his numbers are great.

We all know that when a person with type 1 diabetes starts to exercise, they experience low blood sugar, they have to eat extra carbs and turn down their insulin. When you take an extra 20 carbs to help your body deal with exercise, what if you don’t eat these 20 carbs and don’t take insulin? Instead of giving him extra carbs, I used exercise as insulin.

It’s kind of flipping it on its head.

Yes, because exercise increases insulin sensitivity. And when you don’t take insulin when you exercise, you don’t get hypoglycemia. So it is very safe. In Copenhagen, people walk a lot; on the average day, Alexander walks an hour, and then he does exercise—an hour of swimming or an hour of football. And on those days when he’s exercising a lot, his blood sugars are perfect. But if he misses a couple of days, then his blood sugar is a little higher.

For dinner, he eats vegetables and meats along with an almond-flour cheesy bread.  These days I’m more generous than I used to be—I got comfortable with what he could eat, and he’s getting bigger, so he needs more food. But I also give him fewer carbs than I used to as his tolerance has gotten lower. So these days, he gets low-carb granola rather than oatmeal; and his snack after school is low-carb cakes, muffins, or nuts. I have a focus that every day he has to consume a bit of everything. I believe that although almonds are very healthy, if he gets only almonds all day, that’s not healthy.

Have you had pushback from people? From doctors, from parents, from people with type 1 diabetes?

Yes. I think that when I got these beautiful results, a lot of people around me were starting to talk about me to other people with type 1 diabetes. Most people didn’t want to see me. I invited one, but they said they didn’t want to because they wanted to do things as normal as possible.

And the hospital told me that this diet would make him socially handicapped in a way, and I thought, if I can keep him off insulin by doing something, I think he’s more normal, since he doesn’t have to rely on this medicine. It used to be that he would tell people he has diabetes, and now he just says he can’t tolerate carbs.

But it has a negative side, too, because you’re risking having the disease again. You get diabetes once, you start insulin, then you’re off insulin for one year, and then you have to start everything from the beginning.

One thing about type 1 diabetes is that it comes out of the blue. Coming to terms with this kind of life condition takes time. For the first couple of years, my hands were shaking every single morning, because I thought this is the last day without insulin.

You were so nervous about when the honeymoon would end?

Yes, because I was so afraid of insulin. I would sit and watch him swim and think, okay, probably it’s the last week when I can be relaxed and watch him in the water. I wanted him to learn so many things before he would be dependent on insulin.

How does Alexander think about it?

At this point, he’s so much in charge of his blood sugar and he wants it to be great. He cares about it. He will be ten this summer. Now it’s such a normal life for us; we don’t even think about it. Tonight we went to my uncle’s to eat, and the only things Alexander couldn’t eat were bread and potatoes. But he could eat cheese, and eggplant, peppers with walnuts, lamb with fried tomatoes, chicken, ham, and a tomato salad. He ate everything and the only thing I had to bring was two slices of almond bread.

What type of sweeteners do you use for desserts?

I use stevia; it’s my favorite one. There are stevia drops that come in different flavors—chocolate, caramel, orange. I also like erythritol, that’s what I use for cakes, mixed with stevia.  We don’t use any other type of sweetener, like honey or agave. For the last 3.5 years, he hasn’t had anything with sugar; but we are getting so good at making alternatives. If you don’t eat that regular stuff, your taste buds change.

I think perhaps it’s not very good to make things so restrictive, but I think that I’m giving him a better quality life because he doesn’t have to worry about his blood sugar.

What range do his blood sugars tend to be in? And do you need to check him at night?

No. I don’t have to check at night in the sense of thinking that he might go low. The reason that I check him is if I want to see and learn where he is.

If he ate something new at dinner?

Yes, because there’s one interesting thing about the type of food he eats, it peaks in five hours, because it’s mainly protein and fats. So I want to see how high he’s going. But his blood sugars are still in a normal range; for example, I haven’t seen a number like 15 [270] or 17 [306] ever. But I might see a 10 [180] that stays there for a couple of hours and then slowly starts coming down. Before bed, if he’s 8 [144], I give him 2 units of Lantus, and then he wakes up at 4 [72]. That happens if he’s been exercising. When we are on holiday and he gets less exercise and is on a different routine, then his blood sugar is a little higher. So in those cases, we give him a little more help. If he’s at 10 before bed, then I give him half a unit of rapid insulin. We’ve only had to do this over the last five months; before we didn’t have to do this at all.

So just in the last five months you’ve needed to give him something to bring him down.

Yes, but the thing is, we have never experienced hypoglycemia because the type of food he’s eating and the amount of insulin I give him, it’s very safe. He has been 11 and got ½ a unit, and that’s out of his system in three hours. How low can he go? If I had to give him 5 or 6 units, then it’s more dangerous.

What range might you see during an average day?

His blood sugar might be 4 [72], 5 [90], 6 [108], something like that. The greatest thing about this diet is that until recently, he has never had his meter with him at school.

He didn’t need it?

Because he’s so predictable. Just in the last couple months, I’ve noticed that his numbers might be a little high, and I’ve wanted to see what it is at school , so he’ll take the meter and call me.

Have any doctors wondered whether Alexander has a different type of diabetes, like LADA?

Yes, because this case has been discussed a lot, both in Denmark and internationally. The thinking is that maybe he has type 1 diabetes with a slightly different genotype, but if that’s the case others would have that genotype too. We know that he doesn’t have much insulin production—just give him an apple and you’ll see. But he doesn’t get crazy numbers, because we don’t allow him to. We don’t give him foods that would cause crazy numbers. I’m not stressing his body that hard. What I’ve been trying to do for these 3.5 years is to understand his capacity, and give carbs accordingly. I adapt to that capacity, and also to a level that he feels happy about. So if he says he wants more, he gets more.

Could you tell me about the follow-up studies inspired by the results you’ve had with Alexander?

He had a very good A1C result about one year after diagnosis, and Dr. Svensson said, We told you gluten free, and now you’ve done so many things that we don’t even know what’s working. And I said, Excuse me, I didn’t do this for you! But she was really excited about the results. She could see Alexander was developing normally, and had very good test results on his brain development. It is kind of a belief that you need carbohydrates for your brain, but you don’t.

Here was a child with type 1 diabetes who didn’t require insulin. His A1C was below 6%, and he was growing and developing normally. So she wrote an article on him, so she could start a project to study these results. She got money from Novo Nordisk.

Svensson has about 25 young people in her study. I think she will be publishing the results soon. I know some of the people in the study, and I’ve heard anecdotally that initially they had very good results; most patients when they started eating low carb and gluten free, they were off insulin. It continued for 4 or 5 months, and then they required insulin, but they required less of it. They said that although the project was only for one year, they still continue eating like that because they think life this way is much easier for them. They don’t have the lows or the very high highs.

But even in the hospital’s trial, there are so few people who have strictly followed everything that I’ve done. They didn’t exercise the same way we did. Some might just try to eat an egg in the morning, chicken for lunch, and fish for dinner. That’s too much protein. So I had this focus on this very special diet.

In some cases the disease is hugely unpredictable. Even in clinical trials, there may be 70% responders and 30% nonresponders. I think what needs to happen is a trial of a hundred people who are doing very similar things to what we’re doing with Alexander, and then we’ll see how many of them get results like he has.

Jannet wants to do a larger study where she would split the subjects into groups. She wants to try exercise in one group, gluten free in another, low carb in another,  and low carb with gluten free in another. She knows what we’ve done for Alexander, and that it’s working for us. But as a scientist she has to prove which factor is the most important. Unfortunately, she’s not getting a lot of kids volunteering. It’s not medicine these kids need to take; it’s a whole concept. For me as a parent, it was devastating to be told that there was nothing I could do about Alexander’s diabetes. But a lot of people don’t want to try something that hasn’t really been tried. Also, parents of kids with type 1 diabetes don’t like to talk about diet because it reminds them of type 2 diabetes, which is a different disease.

You mentioned that the doctor said that you’re doing so much that she didn’t know which intervention was working. As a mother who’s doing this work, do you have an instinct about which is the most important intervention?

I think exercise and low carb.  I do believe that gluten free has some effect. If you think of gluten, it is very inflammatory. If you remove it, it should take the stress off the pancreas. But if I didn’t reduce the carbs, I wouldn’t see the benefit of it. The gluten-free suggestion gave me the inspiration that something could be done with food.

Do you know of others who have had similar results?

I know that someone who read this story about Alexander has been without insulin for 15 months. This young man is 21 years old; he didn’t have a honeymoon. He was on insulin, and learned about Alexander’s story from a common friend, and then he started eating low-carb. He’s enjoying the independence from insulin as long as it lasts.

The reason doctors are telling you and me to have our children eat carbohydrates and be normal and take insulin is that that’s the only thing they know. So I took a risk, because I thought the risk outweighed the benefit. I got Alexander entirely insulin free for three years. This was worth it for me, but not for everybody.

But it’s not as if I’m following an untested diet. There are people who are eating like this without having diabetes—paleo, etc. If you’ve read the literature about the high fat, low carb diet, it gives you lasting effect.  That’s why sports people are eating paleo, because it gives them a lot of energy. And I see that with Alexander. He’s on an advanced swim team with 17 other kids. Recently he did an event where he swam 6 kilometers nonstop in 2.2 hours. It was very impressive since none of the other participants came even close to his result, and there were 146 swimmers, some of them 14 years old.  His trainer told me that it is a record result for his age group. There were lots of participants with sweet drinks and even with glucose tablets (none of them had diabetes). All Alexander had before swimming was almond flour pancakes with macadamia nut butter and blueberries, along with some cucumbers, carrots, and peppers right before he started.

It sounds to me like with Alexander you’re slowly having to use more insulin, so it’s going to be an adjustment. But my guess is that his blood sugars are going to tend to be more even than others’, because if he stays eating low carb and stays active, he’s going to be using a small amount of insulin.

Yes, it’s a combination. In America, they did a trial where they gave children omega rich food, and they had much better residual insulin production. And the other is they tried a gluten-free diet. And I think I already did a combination of that. Whatever I did for Alexander, I believe every single bit is important, and it’s in combination. All the literature that I’m getting day by day is proving that what I’m doing is right and makes sense. I see these dietary restrictions–which actually now that he’s eating a lot of different things are not even really restrictions–as an investment in his health.

Would you have any advice for newly diagnosed families?

What I would say is that doing something active does help. Because I think the worst aspect of diabetes is that it comes very suddenly and changes everything around you, and you simply don’t have time to breathe. There are so many things around it. And acceptance is so hard. Also, the idea that there’s nothing you can do about it is hard. If you have celiac, you can go gluten free. If you have type 2, you can change your diet. But if you have type 1, you are just told to take insulin. For Alexander, although he was just six years old, giving him the choice of gluten free was so reassuring because he was old enough to understand that there was something empirically wrong with him. I’m normally very cool, but this diagnosis blew out my patience and everything, so I was just constantly crying. He could feel it and sense it, and he knew that there was something terribly wrong. At first we just tried going gluten free, and he got kind of a hope that we were doing something to make this work. We never told Alexander that he was going to be cured with the gluten free; we never lied to him.

For me it was actually very helpful knowing that I was doing something to prolong his honeymoon. Every year and month you manage to have good control you’re stressing your body that much less. I would just say to the newly diagnosed people that if they don’t think about diet, it is virtually impossible to manage your blood sugar if you eat normally. Is there any one who’s eating everything—pizza and donuts—and using the pump and their blood sugar is predictable?

I think whether you’re able to maintain a diet like this depends on the child and their personality. We tend to cook low-carb and gluten-free at home, but Bisi gets really upset if she can’t have what her friends are having when she’s at someone’s birthday party or something like that. We decided it wasn’t worth battling with her over making her eat in a certain way all the time.

With Alexander it was hard in the start but became easy. But yes, there’s also the psycho-social aspect of it. If the child isn’t happy with the diet, it’s not going to work.

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.