The Three Year Diabetes Honeymoon

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

I first learned about Alexander’s diabetes honeymoon a day or two after our daughter, Bisi, was diagnosed with type 1 diabetes. In those early rushed days of trying to find something—anything—that we could do to help ameliorate Bisi’s condition, my husband found a case study about a boy diagnosed with type 1 diabetes in Denmark who had gone on a gluten-free diet after diagnosis and, sixteen months in, had an A1C of below six percent, with no daily insulin therapy. The study helped persuade us to start Bisi on a gluten-free diet, and though her diabetes honeymoon didn’t last 16 months, it did last more than twelve. Recently, after I mentioned the study in a blog post on A Sweet Life, Alexander’s mother, Ekaterina Lochoshvili-Griffin, reached out to me. We started corresponding, and eventually talked by phone, so I could learn more about Alexander’s case and the many things Griffin has done to prolong his honeymoon period.

Here are the basics: Alexander was diagnosed almost four years ago when he was about to turn six. Over the years, his mother has perfected a low-carbohydrate diet that relies heavily on vegetables, nuts, seeds, low-glycemic fruit, meats, and fish. He’s had no milk or sugar of any kind since he was diagnosed, but does eat cheese and yogurt, and sweet desserts made with stevia. Exercise plays an important role—he swims three times a week, plays on a soccer team, and, in the pedestrian-centric city of Copenhagen, walks about an hour a day. For the first three years, Alexander used almost no insulin, except for an occasional dose of long-acting insulin when he was sick or not getting as much exercise as usual. Lately, as his own insulin production has waned a bit, he’s needed long-acting insulin more often, as well as the occasional ½ unit of short-acting insulin at the end of the day, though not with meals. During these years on the diet, Alexander has never experienced hypoglycemia, and his blood sugar has only very rarely topped 200. His A1C has hovered at 6 percent or below; and he’s doing well on all measures of development.

For someone like me, who has a child of a similar age with type 1 diabetes, this case brings up complicated emotions. I would have loved Bisi to have had a multi-year honeymoon, without the lows and highs that often come with the territory in type 1 diabetes. Though it could be the case that Alexander has an unusual genotype of type 1 diabetes where he’s been able to maintain insulin production longer than other people would have, there’s no doubt that a diet like the one he’s on puts less stress on the pancreas, and leads to less jagged lows and highs. We see this when we eat at home, where we give Bisi food that is gluten free and relatively low carb. Her blood sugars remain in an even range. It’s when we go out and she’s faced with the normal temptations of pasta, pizza, and ice cream that her blood sugar numbers become more dramatic. Yet with Bisi, food can be a delicate dance. We don’t want to turn it into more of an issue than it has to be, and she minds terribly when she can’t have what others are having or feels like she is being unfairly limited because of her condition. So we have chosen to take a middle road on this.

But I think Alexander’s case brings up some important issues. Would type 1 diabetes be easier to manage if children and their families were given the tools, knowledge, and encouragement to try to follow a healthy (i.e., not just eggs and bacon) low-carb approach? Does a gluten-free diet slow down the destruction of beta cells? How can we harness exercise to help lower the need for outside insulin?

For some perspective, I ran the details of Alexander’s case by a pediatric endocrinologist, Dr. Martha Bardsley, who works at Nemours duPont Pediatrics outside of Philadelphia.  Her response highlights both the potential benefits of following Ekaterina and Alexander’s approach and some of the barriers in the way of doing so. “I loudly applaud Ekaterina and Alexander. Her decisions about diet and exercise are safe and scientifically grounded, and appear to have decreased stress and improved health in their family.  Endocrinologists have swung from ‘eat no carbs’ when we didn’t have insulin to ‘eat only a specific amount of carbs at specific times of day’ with use of Humulin and Regular to ‘eat whatever you want whenever you want, as long as you cover’ with the 24 hour insulins and fast acting and pump.  In my experience the fewer high glycemic index carbs and the more exercise, the better the control, and the more research a parent does, the better the control. That being said, the single biggest hurdle to having stable sugars close to the normal range for most kids is the psychosocial stress: the power struggles that are part of normal development, the being different, the minute to minute and day to day, and year to year burden of this disease.”

I know that for me, learning about Alexander’s case has brought a renewed resolve to work with Bisi on finding foods that taste good without wreaking havoc on her blood sugar. Griffin’s Facebook page, Low carb experiences with a Type 1 kid , is a good place to start, with its collection of links to recent studies related to nutrition and diabetes, and recipes for things like herbed almond bread, granola, and low-carb chocolate cupcakes.

Tomorrow we’ll post my interview with Griffin. She and I spoke twice by phone, while she was on vacation in her home country of Georgia.

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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.

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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.