Gluten Free?!? You've got to be kidding.

I think we were still in the hospital when Mark suggested  that we try having Bisi go gluten free. Upon Bisi’s diagnosis, he had gone into full research mode, and had found a study of a five year old boy in Denmark with T1D who had gone gluten free after a couple of weeks without needing insulin treatment. He had gone into a “honeymoon period”—when your pancreas starts working again after diagnosis, after the insulin injections have given the sputtering organ a chance to rest. At the time of the study, this boy had been in remission for 20 months, and the researchers hypothesized that going gluten free had increased the length of his remission.  We were told in the hospital that a honeymoon period can last weeks, months, even a year, before its inevitable end. So twenty months is pretty unusual.

Mark and I got into a bit of a… debate about whether Bisi should go gluten-free. I pointed out that Bisi wasn’t even in a honeymoon period, and that the story of one boy in Denmark wasn’t enough reason to make her diet even more restricted than it already was. Also, all of our lives were already going through such huge changes. We hadn’t even perfected the basics of how to carb count or cook for our newly diabetic daughter. How could we pile something as complicated as going gluten-free on top of it? Realistically, how could I take on the gluten-free cooking—since I’m the one who does 98% of it.

Mark did some more research, but the picture didn’t become much clearer. There is no clear link between gluten and diabetes, but there are some intriguing hints. Ten percent of people with T1D also have celiac disease—an intolerance to the gluten in wheat (Bisi tested negative for celiac). In 2009, an article in Diabetes Forecast magazine reported on a Canadian study that indicated that “wheat can cause problems other than celiac in people with type 1 diabetes”: “Canadian researchers who studied 42 people with type 1 found that nearly half had an abnormal immune response to wheat proteins, while none of the 22 participants without diabetes had such a reaction. When the researchers looked for a genetic cause of the immune cell overreaction, they found that it was linked to a gene associated with type 1 diabetes—but not related to a gene associated with celiac disease. According to the study’s authors, people with certain genes may be more likely to have an exaggerated immune reaction to foods like wheat, and this may spur other immune problems, like diabetes.” 

Another study from 2009, published in the magazine Diabetes, found that “Mounting evidence suggests that the gut immune system is involved in the development of autoimmune diabetes. An inflammatory state has been demonstrated to be present in the structurally normal intestine of patients with type 1 diabetes, and the abnormal intestinal permeability that has been found in these patients could represent a contributing factor.”

Essentially, the thinking is that people with type 1 diabetes have different intestinal flora than those without, and that their guts are more permeable. (People with other conditions including colic and autism have been found to have different intestinal flora too.) And Mark’s thinking, drawing from these two studies (again, some research backs him up on this, and some doesn’t), is that gluten is part of what has damaged Bisi’s gut, or microbiome, and that perhaps the increased permeability has affected her absorption of sugars and overtaxed her pancreas. Don’t worry, you’ll be hearing more about the microbiome later—including our search for the best probiotic to inject some “good” bacteria back into Bisi.

So, after talking all this over, Mark and I decided that we would try Bisi on the gluten-free diet (Mark has gone gluten free in solidarity, and because he has psoriasis, an autoimmune disease associated with diabetes and also with differences in the microbiome). We would hope that Bisi would enter a honeymoon period, where her pancreas would start to produce some insulin again. And if she did, we would hope that we could extend her honeymoon.

I am still torn about this decision. It has definitely made things harder and more restricted for Bisi; there are so many things we tell her she can’t have—bagels, buttered pasta, pizza. And it sets her apart even more from her friends, when they’re having pizza and cake at a party, and Bisi is eating her special meal of meatballs and a fruit popsicle. Also, we can’t promise her that this is going to make an appreciable difference for her—it’s based on guesswork, not strong evidence. And yet, Bisi really shouldn’t be eating these carby things anyway (all things that she craved before diagnosis; we wonder whether her intense desire for carbs was part of her prediabetes), so going gluten free is an easy way of steering her toward low-carb meals. Also, as Mark argued to me, what if research tells us ten years from now that if you go gluten free when first diagnosed, you can preserve some pancreatic function? We want to make sure that we’ve done everything we can do, and we don’t assume that conventional doctors are looking into or thinking about this approach. Like all parents of a child with a disease, we are wishing for a miracle. More realistically, we are  hoping that restoring the health of her gut may help with the management of T1D.

I have found the diet easier than I thought it would be—though on occasions—like when Bisi is crying because she can’t have the mac and cheese she really wants—it’s been very hard. In general, my strategy has been to avoid bready things in general—ie, we haven’t replaced the bagels with gluten-free bagels (a medium bagel has more than 50 carbs), we’ve replaced them with rice cakes, which are only 7 carbs each. But I’ve also come up with some gluten-free and low carb alternatives so that when all of Bisi’s friends are having brownies or cookies or muffins, she can have some too. Do we know that the gluten-free diet is making any difference whatsoever? No. Do I worry that Bisi will resent our putting yet another restriction on her--and this one by choice? Yes, all the time. But right now, given what we know, it feels like the right thing to be doing.

 Low carb blueberry muffins

I have adapted some muffins from the web site Diabetes Daily. The blueberry ones are about 12 carbs per muffin, but I’ve also tried this recipe with apples and (unsweetened) pumpkin puree. Bisi loves these for snack; and they’ve been a hit with others as well—ie, not only with those who are forced to eat them.

1/2 cup plain yogurt

1/3 cup coconut oil

2 eggs

1 tsp vanilla

1/3 cup coconut nectar or coconut sugar (available at Whole Foods)

2 cups almond flour (also available at Whole Foods, or through Bob’s Red Mill)

pinch of salt

1 tsp baking soda

1/4 tsp cinnamon

5 ounces blueberries, fresh or frozen

Preheat oven to 310 degrees F.

If using fresh berries, rinse well and remove any stems or debris.

In a bowl, mix yogurt, egg, coconut nectar and vanilla together.

Add coconut oil and blend. (Note: I’ve found that I have to melt the coconut oil in the microwave first.)

Add dry ingredients to wet, and blend well, add blueberries last.

Prepare a cupcake/muffin tin with cupcake liners or use silicone cupcake baker.

Spoon batter about 3/4 full.

Bake for about 20 minutes, or until the center is firm to touch.

Yield: 12 small muffins

The Elephants in the Room

 Do you remember when you first brought your baby home, and you would find yourself checking on her, just to make sure she was still breathing? Do you remember that fear you felt for someone who seemed so vulnerable? 

That fear dissipated for me once Jamie and Bisi were no longer tiny infants, but the diabetes diagnosis has brought it back.

There are several reasons why a t1D diagnosis is so scary (though there are many worse and scarier diagnoses to have). Diabetes can kill someone quickly, through severe low blood sugar caused by the insulin people with t1D must take. Or it can kill someone slowly, through heart disease, kidney failure, or one of the many other conditions that t1D can cause. But with careful management and probably some luck too, diabetics can live long, healthy lives.

Still, there are many times since Bisi was diagnosed that I have had that catch of fear, and have gone in to check on her while she’s sleeping, just in case. The many blood sugar tests we give Bisi each day are both to gauge how much insulin she needs at meals, and to make sure that the insulin isn’t pushing her too low. Each night, before we go to bed, we test her while she’s asleep. If her blood sugar is below 80, we need to wake her up to get her to drink some quick-acting sugar like apple juice. If it’s between 80-100, she drinks something slower acting, like milk. If it’s above 250, we give her a half unit of insulin to bring her glucose level down. In any of those cases, we check her again at 2 am to make sure she’s not too low. If the blood sugar of a person without diabetes starts going low, the pancreas releases a hormone called glucagon, which calls on the liver to release stored sugar. Bisi’s pancreas doesn’t work that way anymore, so she needs to eat something with sugar to bring her blood sugar up.

She could go too low during the day for one of many reasons—we could overestimate the carbs she’s eating and give her too much insulin; we could mess up her dose, giving her a unit rather than a half unit; physical activity can make blood sugar plunge (we make sure she’s at 150 before doing something strenuous), as can a fever or stomach virus. (In fact, getting sick is much more serious for diabetics than for others—please don’t bring your child over to our house if you know she’s sick!)

All this is to say that the world suddenly feels like a much scarier place in terms of Bisi, and at a time when she should be putting some distance between herself and her parents—going to camp, going over to a friend’s house after school, or for a slumber party or birthday party—it takes a lot of planning to give her a semblance of independence.

The first time after her diagnosis when I let her do something without me, she went with her brother to a fishing camp for a couple of hours. I tested her before she left, instructed the counselor to give her a snack with carbs at a certain time, and gave the counselor some apple juice to give to her just in case. Still, ten minutes after I’d driven away I freaked out, and called the counselor to ask him to give her half the apple juice—it’s less immediately dangerous to be too high than too low. And then, even though I was playing tennis with people I didn’t know, I stepped off the court twice, in the middle of points, to answer my phone, worried that it was someone calling from the camp (it wasn’t; and no, I wasn’t invited to play tennis with them again!).

I am not inherently a worrier, but with this it’s impossible not to be. It’s a leap of faith for any of us when we leave our child in someone else’s care. But that leap is now much bigger than it used to be where Bisi is concerned. Every day, Mark and I need to trust that the school nurse will give Bisi the right dose of insulin; that the gym teacher will watch for signs of lows while she’s running around, that the mom who takes her home for a playdate will keep a special eye on her.

As long as I’m talking about fear, I might as well go all the way and talk about grief. I read a great post recently on the diabetes site A Sweet Life, by a clinical psychologist who went through the five stages of grief  after being diagnosed with diabetes. She said in the piece, “I mention my mother because even though I was not a child anymore, she too grieved my diabetes.  All parents do.” I had never thought about it that way before, but she’s right. Even though Bisi can live a long, healthy life, I feel terribly sad for her, and for us. Sad that she will need tens (hundreds?) of thousands of blood tests and injections; sad that what she can eat and how she lives is so much more regimented and restricted than it was before; that she faces health consequences and worries that a six year old shouldn’t even have to know about or think about. And I feel sad, even though she is a girl who takes an enormous amount of pleasure out of life—when she loves something, you know she loves it by the huge smile on her face and the irrepressible giggle she lets out of her mouth—that she knows her life is shadowed by this. The other day, looking at our Elf on the Shelf who had been lurking for several days on a sidetable in the living room, she asked me:  “Do you think if I ask Elf for something he’ll pass it on to Santa Claus?”  She whispered something to Elf that I couldn’t hear then said, “Well, I guess I can tell you what I asked him. I asked him if he could maybe do something about my diabetes.”  “You mean to help make it better?” “Yes.” If only Santa were so all-powerful. All I could do was give her a hug.

 Risi for Bisi

This recipe is definitely not the tip top choice for someone with diabetes, since it involves a lot of starchy white rice. But it is one of Bisi’s favorite dishes—partly because of its cheesy, comforting deliciousness, and partly because it shares her name. So I still make it for her now and then. We found it one day when she asked me whether there were any other Bisis out there. We did a Google search together, and up popped a recipe for “Risi e Bisi” (Italian rice and peas). The version I make is adapted from Martha Rose Shulman’s Recipes for Health in The New York Times—a great resource in general. 

Rise e Bisi

About 7 cups chicken or vegetable stock, as needed

2 tablespoons extra virgin olive oil

1/2 cup minced onion or spring onion

Salt, preferably kosher salt, to taste

1 1/2 cups arborio or carnaroli rice

1 garlic clove, minced

1/2 cup dry white wine, such as pinot grigio or sauvignon blanc

A package of frozen petite peas

2 sweet Italian sausages

Freshly ground pepper

2 tablespoons chopped fresh parsley

1/2 cup grated Parmesan cheese

1. Put your stock or broth into a saucepan, and bring it to a simmer over low heat with a ladle nearby or in the pot. Make sure the broth is well seasoned.

2. Heat the oil in a wide, heavy nonstick skillet or saucepan over medium heat. Add the onion and 1/2 teaspoon salt, and cook gently until tender and translucent, about five minutes. Add the rice and garlic, and stir until the grains of rice are separate and beginning to crackle. Add the wine, and stir until it has been absorbed. Begin adding the simmering stock two ladlefuls (about 1/2 cup) at a time. The stock should just cover the rice and should be bubbling, not too slowly nor too quickly. Cook, stirring often, until the liquid is about absorbed. Add another ladleful or two of the stock, and continue to cook in this fashion, adding more stock when the rice is almost dry and stirring, for 10 minutes. Taste now and correct seasoning.

3. Meanwhile, cut the casing off the two sausages, and cook them in a frying pan, breaking them up into small pieces.

4. Add another ladleful or two of stock to the rice.  Add the frozen peas. Stir in the pepper, parsley, sausage, and the Parmesan, and remove from the heat. The mixture should be creamy (add more stock if it is not). Stir once, and serve right away.

Serves four to six

Back to a New Reality

After Bisi’s diagnosis, she and I left Block Island on a Monday and returned on Friday, five days later. But it felt more like five years. So much had changed for Bisi and for us—it was hard not to think of the world as BD (before diabetes) and AD.  My Mom and Jamie picked us up at the ferry, smiling and waving excitedly from the pier as the ferry docked. I told Jamie: “That was one of the longest weeks of my life. Did it feel like a long week to you?” “No, it felt really short!” At least someone had been having a good time. My Mom and her friends had kept Jamie busy swimming, fishing, eating out, and playing games. But Jamie was clearly very concerned about his little sister, treating her with a tentativeness and delicacy that has dissipated a bit since. The kids love playing elaborate imaginary games with their stuffed animals—games like school or animal football (“Lobster passes to Ellie; she breaks Lambie’s tackle and scores!”). Bisi brought back a stuffed dinosaur she’d picked out for Jamie at the hospital; and he gave her a stuffed lobster he’d bought on the island. They incorporated the new animals into their playing and adjusted the game to play animal hospital, complete with blood sugar tests and insulin injections.

What I realized during that week on Block Island was how many of our rituals revolved around food, and how much I would miss the easy freedom of grabbing a quick meal or snack for Bisi without having to worry about blood sugar or shots or tests. On Block Island, one of our rituals was going to get Payne’s donuts (for me, this was a daily ritual, but I justified it by the fact that we’re only there for 2 weeks a summer). The donuts were total heaven if you got them fresh out of the fryolator—crispy on the outside, soft on the inside, and coated with cinnamon or sugar (granulated, not powdered). But now suddenly they seemed like hazardous “carb bombs,” as Jamie called them. Another ritual was picking blackberries and cooking a cream and sugar laden blackberry pie. Another was going to the local ice cream parlor for brownie sundaes or rainbow sherbet. This makes it sound like all our food rituals revolved around sugar; before Bisi’s diagnosis I had never stopped to analyze the strong correlation between food rituals and sugar, or worried about how many of those rituals we’d developed.

Another ritual was going to the Block Island farmer’s market on Saturdays, so in an attempt at normalcy, we went there the morning after we arrived. I managed to steer Bisi past the delicious homemade scones, but not past the table run by our friend Sue Littlefield with samples of great local honey: clear honey made from the nectar of blackberry blossoms; cloudy made from goldenrod. We also couldn’t get past the fresh squeezed juice that both Jamie and Bisi loved. We bought an orange juice and told Bisi that she could have it later, so we could include it in her carb calculations and insulin dose at lunch. (Even though we matched her dose to the carbs in the orange juice, her blood sugar after lunch spiked past 400—another lesson we were learning was that not all carbs are created equal, and that the 30 carbs in a cup of orange juice would spike her much higher and faster than an equal number of carbs from, say, brown rice.) We also bought some smoked local fish (good protein snack) and locally grown Asian greens, as part of our effort to get Bisi to eat as many leafy greens as possible. But I was so flustered by the effort of trying to negotiate our way around the new carb hazards in a way that wouldn’t make Bisi miserable that I left the food bags at the market. (Luckily, Block Island is the type of place where someone had given my bags to the last truck, and I caught him a couple hours later, just as he was packing up.)

Part of the issue while we were on Block Island was that Bisi was absolutely ravenous. Now that she was getting insulin, she was once again able to absorb nutrients from her food. She was needing huge snacks several times a day, yet we were trying to find protein-rich snacks that wouldn’t require an insulin shot.  The doctors in the hospital had established a carbohydrate ratio for Bisi in the hospital of 70 grams of carbs per unit of insulin (we adjusted this ratio several times while on Block Island and have continued to adjust it since). With that ratio, she could have a snack with up to 27 carbs without needing any insulin. A lot of different snacks fit under that cut off—most yogurts, some granola bars, or things like crackers and peanut butter (peanut butter is quite low carb). It’s when you get into the carby baked goods that you get into trouble. One Starbucks blueberry streusel muffin, for instance, is 57 carbs. Wherever we went—beach, fishing, out for walks, over to someone’s house—we brought pre-measured snacks of all different kinds.

Another issue was that suddenly imposing a complicated regimen of carb counting and insulin calculation onto the already chaotic mealtimes at a summer house full of guests was a challenge. My mother, who owns the house on Block Island and was there with us, is a wonderful cook who loves to entertain. So she would be planning and preparing elaborate meals for 12 while we were testing blood, counting out carbs, dosing insulin, and measuring out food to match. Implementing this was a huge change for Bisi, for us, and for Jamie, since we were suddenly spending ten times more time figuring out Bisi’s meals than his. But also a big change for my Mom, who prefers to have the kitchen to herself but was suddenly having to share it with two obsessive carb counters.

It was during that week that my Mom came up with a very simple apple dessert that has become a staple for Bisi and for the rest of us (plus, it helped us deal with the 200 apples we brought home after some overambitious apple picking back near Boston.) It’s healthy and easy, but, especially if you add a splash of half and half, just special enough that Bisi still feels like she’s getting a tasty dessert. And for a six year old with diabetes—or any six year old—that’s no small thing.

Darcy’s Simple Apple Dessert

Cut up an apple or two and sprinkle generously with cinnamon. Cook it in the microwave in a covered dish until soft, about 3-4 minutes, depending on how many apples you use. Serve plain, or with a bit of half and half to dress it up.

This mixture is also great on hot cereal. And you can substitute a pear for the apple, and of course ginger or nutmeg or any spice you like for the cinnamon.

Addendum on Vitamin D

I think in my post on vitamin D I may have made it sound as if Mark and I are sitting around flagellating ourselves about Bisi’s diagnosis. We’re not.  I do think it’s natural when a child gets sick to wonder if you could have done something—anything--to prevent it. But we quickly moved past that. We don’t have time to worry about it, and there’s no point anyway. A lot of what we’re doing now—trying to cook in a healthy, low carb, low sugar way, giving her vitamin D and other supplements to support her lingering pancreatic function, trying to get her to be as active as possible as a way to manage her blood sugar—we see as proactive ways to keep her as healthy as we can.

But because vitamin D appears to have some benefit for so many potential conditions, I wanted to pass along some more information—some of it came to me in comments on the vitamin D piece (a version of which was posted on The Atlantic’s Web site); and some just didn’t fit into my initial post.

The Vitamin D Council has links to studies about vitamin D’s potential benefits, and also information about how to calculate dosage. Essentially, they recommend that healthy children over a year old should get 1,000 IUs for every 25 pounds of body weight; adolescents and adults, they say, should get at least 5,000 IUs. This is SIGNIFICANTLY  higher than the U.S.’s recommended daily allowance. Of course, the sun is the strongest and best source of vitamin D. If you’re fair skinned and go outside in shorts and a t-shirt on a sunny summer day at noon, you can get 10,000 IUs of vitamin D in ten minutes, according to a good article on the topic in US News.  This is why some pediatricians are recommending that children spend 15 minutes outside before they get slathered with sunscreen. But, again, you could spend all day outside on a sunny October day in Boston and get no vitamin D, because, as explained in that same article, the “sun never gets high enough in the sky for its ultraviolet B rays to penetrate the atmosphere.”

If you are giving your child (or yourself) a lot of vitamin D, you should get them tested to make sure you’re not giving them too much. There are two types of tests; but the most accurate marker of vitamin D levels in the blood is the 25-hydroxyvitamin D test.

Finally, if you want to know more and veer towards alternative medicine and natural health information, you might be interested in this trove of information on vitamin D. 

Bisi’s endocrinologist mentioned that we should give her D₃ (cholecalciferol), rather than D_2, since at high doses the latter is less potent. You can get this anywhere; we’ve found a couple of kinds we like at Whole Foods: Kal D-3 2000 IU chewables (we like this one, because she gets her whole requirement with one sugarless, carb-less little cinnamon-flavored pill) and Jarrow Formulas Yum-Yum D-3 gummies (400 IUs per chew; Bisi prefers this one, because it tastes like candy—we prefer not to give her the empty carbs, but don’t always win this battle). With this--as with all things in parenting—we have to choose our battles; and I have a feeling that in managing as complicated a disease as T1D we are going to find that compromising with Bisi where we can is going to be an important and necessary tool.

Connecting the Dots between Diabetes and Vitamin D

When we were in the hospital, Bisi received a box of diabetes information from the Lilly pharmaceutical company (the same company that produced the Disney diabetes cookbook and that makes the insulin Bisi takes with her meals). The text on the box never failed to crack Mark and me up, in a black humor kind of way. It became especially useful in those inevitable moments where one of us would say something like: “if only we had…” “what if we had…?” The other would respond by  (half) jokingly quoting back the text on the Lilly box: “Pause. Take a deep breath. And remember: You couldn’t have prevented what’s happening with your child, so try not to beat yourself up.”

The truth is, there is no known way to prevent type 1 diabetes, an autoimmune disease where the immune system attacks the pancreas, eventually shutting down its ability to produce insulin, which regulates our blood sugar when we eat. But there are some emerging theories about what makes type 1 diabetes more likely. The most intriguing of these—the one that causes Mark and me to take the most deep breaths—is the vitamin D theory, linking low vitamin D levels to type 1 diabetes.

Several studies have shown this link, including one published in September in the journal Diabetologia. In that study, researchers from the Naval Health Research Center in San Diego and from universities in California and Florida compared the vitamin D levels of military service members diagnosed with T1D with the vitamin D levels of a control group of service members without diabetes. They found that those service members with the lowest concentration of vitamin D in their blood were 3.5 times more likely to develop diabetes than their peers with the highest vitamin D levels.  In 2008, the Archives of Disease in Childhood published a meta-analysis of observational data from four studies of vitamin D intake by young children in various European countries. Their conclusion:  “children being supplemented had a 29% reduction in risk of developing type 1 diabetes compared with their peers who were not being supplemented.”

Mark and I don’t know that Bisi was vitamin D deficient—blood tests for vitamin D levels in children are not standard, even though the American Academy of Pediatrics estimates that more than 75% of infants aren’t given the recommended amount of vitamin D, and even though low levels of vitamin D have been implicated in a wide range of conditions, including cardiovascular disease, osteoporosis, multiple sclerosis, and some cancers. But we think it’s pretty likely her level was low. We weren’t all that great about giving her the vitamin D drops that her pediatrician recommended for breastfed infants (formula is fortified with vitamin D). In New England, the angle of the sun is such that the summer months are the only ones where you can get sufficient vitamin D from the sun’s rays. And I had been obsessively slathering Bisi and her brother, Jamie, with sunscreen ever since my dad was diagnosed with melanoma, a disease that killed him when the kids were 3 and 5. (Mark, and it seems in retrospect that he was right, always argued for the kids to get their 15 minutes in the sun with no sunscreen, so they could get their vitamin D.) In any case, many of the health benefits of vitamin D are thought to begin at much higher levels than the current RDA of 400 IUs for infants and children (the recommendation was upped from 200 in 2008).

In the hospital, Bisi’s endocrinologist told us that if low vitamin D levels contributed to Bisi’s diagnosis, it was one of many causes—a kind of layering of effects. Bisi had a genetic susceptibility—we know now that T1D is linked to other autoimmune diseases that run in our families. A virus like coxsackie, which many children get, may have increased her susceptibility. (This is another “take a deep breath” topic for us. I can’t help thinking back to the time when ten-month-old Bisi got a raging case of coxsackie, which is transmitted through feces, after spending a vacation in the Caribbean crawling around on an outdoor veranda where wild rabbits hopped around and inevitably pooped. We tried to keep her hands clean, but…) There may also be another, as yet undiscovered, environmental trigger. T1D increased 23% in the U.S. from 2001-2009, and worldwide it’s increasing at a rate of about 3% a year. No one knows exactly why.  Still, at least in Bisi’s doctor’s view, vitamin D is an important part of the puzzle. “Do you have another child?” he asked us in the hospital. We told him about Jamie, who is 8. “Give him vitamin D supplements.”

Now, both of our children are taking 2,000 IUs of vitamin D a day—Jamie, because as the sibling of someone with T1D, he is at higher risk. Bisi, because there is some evidence that taking vitamin D can help extend the life of the few insulin-producing cells she still has. (They're also getting tested to make sure they're not taking too much.)

So, pause. Take a deep breath. And remember:  You should make sure your kids are getting enough vitamin D.