Honeymoon!

When Mark pushed me to have Bisi go gluten free, his goal was to get her into a “honeymoon” period, where the pancreas starts working again—though not perfectly—after diagnosis. The theory, in layman’s terms, is that the hard-working pancreas has given up the ghost, but then revives a bit after getting the rest that outside insulin injections provide. Not all people enter a honeymoon period, but the majority do; in one study  of 103 children under 12 with T1D, 71 had a honeymoon. In the hospital, Bisi’s doctors told us that a honeymoon period could last for a couple weeks, or months, or up to a year. Very rarely, they emphasized—strongly—does it last longer than that, and the diabetes honeymoon, like all honeymoons, inevitably ends. 

Bisi started off at 4 units of Lantus a day—that’s one shot of slow-acting insulin that lasts about 24 hours in the background. She also receives Humalog, or fast-acting insulin, with her meals. In the hospital, to be conservative, they started her off at one unit of Humalog for every seventy carbs she ate. Over time, this ratio was adjusted downward, to a low point of 40 or 45 carbs per unit of insulin. Meanwhile, after some night-time lows, they adjusted her Lantus downward from 4 to 3.5 to 3 units a day.

We stayed at these numbers for maybe 6 weeks when suddenly, she started having unexplained lows. In particular, I remember one morning when we went to Gloucester for a hike. Bisi had had no Humalog with her breakfast, and we’d given her a yogurt snack, which is normally enough to keep her blood sugar adequately high, even if she’s active. At lunch we tested her, and she was 55. Fifty-five!! She’d never gone so low before, and for a diabetic, anything below 70 is considered worrisome. (Her range is supposed to stay between 80-180.) The honeymoon had begun.

The thing is, it turns out that the honeymoon is actually pretty stressful. As Bisi’s diabetes nurse educator told me, “A honeymoon is a terrible name for it.” For the next while, we felt like we were constantly chasing Bisi’s lows—she’d have a series of lows, and we would reduce her dose. She’d have more lows, and we’d reduce some more. Slowly, by half units, her Lantus dose went from 3 down to .5; then it went down to a “small” half unit—this is such a tiny amount that it’s not even a real measurement on Bisi’s syringes.  Meanwhile, her carb ratio went up, to a high of 60 during the day and 45 for dinner (many children need more insulin to cover their carbs at night). There have been a couple of weekends—times when we’ve been very active, when Bisi hasn’t eaten many carbs, and when she perhaps has had a low-grade illness pushing her blood sugar down—where she hasn’t needed insulin at all. On those weekends, what a huge relief it’s been to not worry about Bisi going low when she’s skiing or playing for hours at a water park—because she had no insulin in her system, there was no danger of her going low. It’s been a relief for Bisi, too. Not long after she was diagnosed, I asked her whether having diabetes was better or worse than she’d thought it would be when we first learned about her regimen. “It’s worse," she told me. "I didn’t know I’d be getting so many shots.”

At her peak, right after diagnosis, Bisi was getting six insulin injections a day (plus all the blood tests). Now, she still gets the blood tests, but she usually gets a maximum of three shots a day.

Once Bisi started honeymooning, we looked into other ways aside from the gluten-free diet of pampering her resurgent (though still very weak) pancreas. Her endocrinologist suggested we give her vitamin D, since there’s evidence that high vitamin D levels can extend the honeymoon. A relative who’s also an endocrinologist suggested that she take omega 3s. An herbalist suggested that she take fenugreek, burdock, and nettles to strengthen her pancreatic function. They won’t cure type 1 diabetes, he told me, but he believes that herbs like these can extend the honeymoon. Preserving the honeymoon is also a reason why we’re keeping Bisi relatively low carb—we don’t want to overtax her pancreas. 

Are we beginning to sound like kooks? Sometimes I wonder. But from other parents I’ve talked to, the highs and lows of diabetes are much more difficult to manage once the honeymoon ends. At that point, from my understanding, when the pancreas stops working for good and insulin needs are much higher, you are subject to higher highs, lower lows, and more dangerous swings between them. Even though I’ve complained here about having to get up in the middle of the night to test Bisi, those parents of children with diabetes whose honeymoon is over have to get up far more than we do—their kids are low, then high, then low again. If that is our future with Bisi, who can blame us for trying to delay it for as long as possible? (Sometimes the testing process at night goes perfectly, Bisi doesn’t wake up, and her blood sugar is at a comfortable 150. Other times, we have to poke around a while to get a big enough drop of blood. On one such night, Bisi roused slightly and said something that sounded like “Fooooouk.” “What did you say??” I asked her. “Foooouk.” I’m still not sure what she was saying, but if she was dropping the f-bomb, who can blame her?)

So we live in dread of what we’ve been told is the inevitable end of her honeymoon. Meanwhile, Bisi’s pancreas is sputtering along—I picture it as like the Vespa I once rode in Sicily—sometimes it’s speeding along faster than you’d expect, causing lows, other times it decides to conk out, causing highs. In the five months since she’s been honeymooning, we’ve thought the honeymoon was over several times—usually after holidays, when it is very difficult to limit her sugar intake because desserts are plentiful, and everyone around her is eating a lot of them. But, like the little engine that could, to use another metaphor, each time she starts producing a little bit of insulin again and her blood sugar levels go down.

Yet, according to at least one prominent expert in diabetes, Dr. Richard Bernstein, the end of the honeymoon period is not  inevitable—though it’s very, very likely. Bernstein, a type 1 diabetic, is the inventor of the basal/bolus method of injections that Bisi and many other type 1 diabetics now follow, where you have one long-lasting “basal” shot each day (Lantus), and then other, short-acting “boluses” with your meals (Humalog). Bernstein was diagnosed with T1D at age 12, and became a doctor in his late forties so he could better understand the disease that he felt was killing him through its complications. He sharply improved his health by switching to a low-carb diet to normalize his blood sugars. In his book Dr. Bernstein’s Diabetes Solution, he writes,  “Based upon my experience with the fair number of type 1 diabetics I’ve treated from diagnosis, I’m convinced that the honeymoon period can be prolonged indefinitely. The trick is to assist the pancreas and keep it as quiescent as possible. With the meticulous use of small doses of injected insulin and with the essential use of a very low carbohydrate diet, the remaining capacity of the pancreas, I believe, can be preserved.” The problem, Bernstein explains, is that by the time someone has been diagnosed with T1D, at least 80% of their beta cells, the ones that produce insulin, have been destroyed. So all Bisi has to work with for the rest of her life are the less than 20% that remain. What’s more, high blood sugar levels are thought to be toxic to these beta cells, so unless you are able to keep very tight control of your blood sugar levels, these cells will burn out one by one.

Bisi is maintaining good blood sugar control; her last A1C level, a measure of how much sugar has been in your bloodstream over the past three months, was 6.3, whereas the target for someone her age with diabetes is anything below 8. (A child without diabetes should have an A1C between 4 and 6 percent.) But she is not maintaining the sort of tight control Dr. Bernstein is talking about—we just don’t feel like that would be sustainable for a young child. Her growing brain needs carbs, and she needs to have the freedom to eat more than just vegetables and protein. If she were old enough to choose to take such an approach, that would be one thing. But it doesn’t feel right to impose it on her. So for now, we’ll see if we can walk the fine line of protecting her remaining beta cells, while giving her enough of what she likes to eat. It’s hard not to have a tiny bit of hope that the honeymoon will continue and continue, but we also need to prepare ourselves that it won’t. Like a real honeymoon, we’ll try to enjoy it while it lasts.

Honeymoon Sundaes

Okay, neither of these really qualifies as a sundae. But both are relatively low carb, yet delicious enough to feel like a special dessert.

Sliced strawberries, topped with whipped cream (heavy cream that you whip up yourself, not the stuff in a can), flavored with a tiny bit of honey.

Frozen blueberries with ½ and 1/2, with a little bit of cinnamon sprinkled on top.

Even More on Sugar

A couple weeks ago I wrote about some of the lower-sugar products we've come to rely on, including Oikos Organic strawberry, blueberry, and vanilla yogurt. This week I had a rude shock at the grocery store, when I found that Oikos Organic has been rebranded as Stonyfield Greek, and that in the rebranding process, both strawberry and vanilla yogurts have gone up in carbs (strawberry from 16 to 19; vanilla from 9 to 10). Okay, they've only gone up by a carb or two, which is a small amount even for Bisi. But one carb can send her blood sugar up by six to ten points, depending on the time of day, so it does matter. And I was annoyed in principle. So I emailed the company asking why the carb counts had changed, and quickly got this response:


Hello Katie,

Thanks for reaching out to us about Strawberry Greek organic yogurt. We
added a little more fruit and flavor to our strawberry and vanilla
Stonyfield Greek Yogurts to make them even more delicious. These slight
adjustments changed some of the nutritional information, like the carb and
sugar amounts, just a little bit.

Thanks again for getting in touch. If you ever have another question please
give us a shout.

Sincerely,

The folks at Stonyfield

I was glad they responded so quickly, but their response--essentially that they added a little more sugar to make these two kinds of yogurt even more delicious--annoyed me even more. I buy this yogurt specifically because it's *not* as sweet as others, so I don't want sugar added to make it "more delicious."

My mom had a similar experience with her favorite cereal, Kellogg's Special K Protein Plus, which she buys specifically because it's high in protein (10 grams) and low in sugar (2 grams). This summer, she noticed an ominous new banner on the box saying, "Now tastes EVEN BETTER!,"  and realized that they'd more than tripled the sugar, to 7 grams. When she wrote the company, they responded that they were just providing what people wanted.

The thing is, what about the market--it can't be negligible--of people who buy products specifically because the sugar is low? I'm curious how many products over the last year or two have bumped up their sugar to try to bump up their sales? Have you noticed any? I'm going to do my tiny part to show them they have the wrong idea. From now on, when I buy strawberry yogurt, I'll ditch Stonyfield's 19 carbs for Smari's 14. Let's just hope Bisi likes it as well.

More on Sugar

For those not yet convinced about the dangers of sugar, look no further than today's New York Times op-ed page with Mark Bittman's column "It's the Sugar, Folks." Bittman cites a study from the journal PLoS, released yesterday, strongly linking higher sugar consumption with higher levels of diabetes (the study deals with type 2, not type 1). "The study demonstrates this with the same level of confidence that linked cigarettes and lung cancer in the 1960s," Bittman writes.

In the study the authors found that when comparing the diets of people from 175 different countries, each 150 calorie per day increase in sugar consumption--that's one twelve-ounce can of soda--resulted in a 1.1% increase in the rate of diabetes. (By contrast, each 150 calorie increase of non-sugary foods resulted in a statistically insignificant 0.1 increase in the diabetes rate.)

One of the study's authors, Robert Lustig, is the same scientist whose work formed the basis of Gary Taubes's argument in his New York Times Magazine piece "Is Sugar Toxic?"

For Bittman, this latest study answers that question definitively. "The next steps are obvious, logical, clear and up to the Food and Drug Administration. To fulfill its mission, the agency must respond to this information by re-evaluating the toxicity of sugar, arriving at a daily value--how much added sugar is safe?--and ideally removing fructose (the “sweet” molecule in sugar that causes the damage) from the 'generally recognized as safe' list, because that’s what gives the industry license to contaminate our food supply."

So it may be that Bisi is ahead of the curve, and that things will change more quickly than I'd thought. I hope so.

The Trouble with Sugar

A few mornings ago, at Jamie’s third grade breakfast share, about half of the items had chocolate, or some other ingredient that in another context could be classified as dessert. Chocolate chip waffles, chocolate chip shortbread, mini chocolate chip raspberry muffins (delicious!), chocolate chip bread, and donuts with sugary pink icing and candy dots sprinkled on top. We brought the low-carb, low glycemic, gluten free blueberry muffins that I mentioned in a previous post. Only three out of the dozen I brought were left, but I know for a fact that Bisi ate three of the muffins and Mark ate two, so they were not a popular item outside our family. Now, I love a good chocolate croissant or chocolate chip scone as much as the next person, but it’s kind of shocking once you start really thinking about how much sugar most of us consume, how integral it is to our daily lives, and how “special occasions”—like a breakfast share, or a birthday party, or valentine’s day, or family dinner at a friend’s house, or…, or…---almost always involve an extra helping or two. I’m not saying anything new here, but sugar is everywhere—many kids eat it at breakfast, lunch, and dinner, and at snacks in between. It’s in some of our bottled water and it’s in our bread. This last is something I never thought about until an Australian friend mentioned to me that he and his family had started making their own bread while in the U.S., since all the bread here tasted too sweet. The food writer Marion Nestle wrote that anything with more than about 15 carbs of sugar should be considered dessert; and by that standard, many kids eat dessert more than five times a day. (This was passed along to me by my friend Gina, who has been researching and thinking  about this issue for years, but, as she says, railing against how much sugar we all eat is a lonely battle that makes you seem like a kill-joy, not least to your kids.)

Sugar consumption is something I was vaguely worried about before Bisi was diagnosed, but it wasn’t something I thought about a lot—unless Gina and I were talking about it. As I’ve written before, type 1 diabetes, as opposed to type 2, is an auto-immune disorder; it’s not caused by eating too much sugar. But there’s no doubt that refined sugar spikes Bisi’s blood glucose high and fast, and that she needs extra insulin to cover it. (Lower glycemic sweeteners such as agave and coconut nectar have a gentler effect on her.) And I also wonder whether someone who’s pancreatically challenged like Bisi could stave off the onset of diabetes by drastically cutting down on their sugar intake.

So it’s clear why I’m now worried about sugar. But according to an article by Gary Taubes that ran in The New York Times Magazine a couple of years ago, all of you should be too.  I’m summarizing a long article into a couple of sentences here—you should read the article if you haven’t—but he posits that refined sugar and high fructose corn syrup, not fat, are responsible for increases over the past century in obesity, diabetes, some cancers, and heart disease. And an article in this month’s Sky magazine talks about the links between consuming sugar and disease, and cites a 2009 study by the American Heart Association that men should eat a total of nine teaspoons of sugar per day and women only five. At four carbs per teaspoon, that's the amount in a half-cup to a cup of ice cream.

The mechanism is complicated, but essentially it involves overtaxing the liver by asking it to process more and more fructose, which in turn means that the body becomes resistant to insulin and must produce more and more to combat the sugar. So it’s a vicious cycle. Scarily, for the parent of a diabetic, Taubes argues that it’s the excess insulin that spurs tumor growth and heart disease. It’s easy not to think about how much insulin your body needs to process the sugar you’re eating when everything works seamlessly and internally. But if I have to give Bisi an extra unit of insulin so she can eat a pink-frosted donut with candy on top at her brother’s breakfast share…well, maybe I’ll just give her the low-carb not very sweet muffin I made instead. (Of course, since she’s gluten-free, she can’t have the donut anyway—now you see one of the reasons why the gluten-free diet comes in handy.) Eating the healthy muffin rather than the tempting donut requires real willpower on Bisi’s part. I asked her recently how she thinks about sugar and she said, “I like to eat sweets but I know it’s bad for me.” “So what do you think the solution is?” “To cut down on sweets and to not always eat them even if your friends are.” And here’s one of the hard things: because of our society’s sugar obsession, when Bisi cuts down on it for her health, that becomes another thing that sets her apart from her peers.

I’ve read that once you start to eat less sugar, your taste for it shrinks too. I feel like I’ve seen that in Bisi, and in myself. That Ben and Jerry’s Mint Oreo that used to be my favorite flavor now tastes too sweet, and I prefer Breyer’s mint chocolate chip (23 grams of sugar versus 17 grams). But I don’t want to pretend that we’re healthier or more virtuous than we are. We’ve cut out the occasional Dunkin Donuts snack; we’ve cut out the weekly trip to JP Licks for ice cream. We’ve cut out the big glob of maple syrup on the oatmeal in the morning. But our kids still eat sugar—probably much more than American kids of a century ago, or than present day kids in other countries. According to one estimate, Americans in 1822 consumed an average of 6.7 pounds of sugar a year. Today, it’s over a hundred pounds. Again, it’s a balancing act. Sugar is such an integral part of U.S. society today that keeping Bisi from eating it would not only make her miserable, but make her feel like something of an outcast. Maybe at some point society will move in our direction; or, when Bisi’s older, maybe she’ll make a choice on her own to strictly limit her sugar intake. But for now, we’ll try to eat sugar wisely, and when we have it, we’ll make sure that it tastes good enough that the choice is worth it.

---

When Bisi was in the hospital, one of the nurse educators we met with suggested that we spend some time in the supermarket aisle, looking at labels to see which treats are a good fit for someone who should be limiting her carbs. Here are a few of the ones we’ve found and like. None of these listings are sponsored—I wish they were. Buying healthy food is expensive!

Yogurt: I always used to give the kids Brown Cow yogurt, but the brand I tend to buy now is Oikos Organic. Their strawberry and blueberry yogurts, at 16 carbs, are less than half what some other yogurts are. And the smaller Oikos vanillas, at 9 carbs, are even better.

I was thrilled one day to find Siggi’s Icelandic yogurt—11 carbs each, and sweetened with agave, which has a much lower glycemic level than sugar. But, unfortunately Bisi doesn’t really like them—they’re too sour. Maybe if I can get her sugar needs down further I’ll try again. Stay tuned for Mark’s efforts to make our own yogurt—the machinery has arrived, but the experiments have yet to begin.

Ice cream, yes, ice cream. I’ve found that ice creams, too, vary considerably in terms of how much sugar/how many carbs they have. If Bisi’s going to a birthday party, Hoodsie’s are a good thing to send with her, since she can’t have the cake. They seem special, since they come in those cute little cartons. And the portions of them are relatively small—about half a cup. I’ve found that Breyer’s ice cream tends to be lower carb than many other brands. Note that some sorbets have more than double the amount of sugar that many ice creams do (because they’re all fruit and sugar, rather than dairy and sugar).

Popsicles:  We like the Smooz fruit pops, at 11 carbs. And Lifeway’s 13-carb frozen kefir pops, with probiotics.

Kind Bars:  The carb counts of these vary widely, but some of them are as low as 14 carbs, and they’re a great snack since they’re full of nuts (protein), they aren’t very sweet (usually about 5 grams of sugar), and they’re high in fiber--fiber counteracts carbs. Unfortunately, whether Bisi likes these is mood-dependent.

Cereal:  Purely Elizabeth: a gluten free granola sweetened with coconut sugar with various ingredients that are supposed to be great for you, like chia seeds, amaranth, and quinoa.

I recently discovered Seitenbacher gluten-free muesli #6. I like it because Bisi likes it and because it’s low carb, high in protein, and high in fiber. 

Also, at a farmer’s market in Seaside, Florida, we tried and bought an incredibly delicious cereal/snack called Veronica’s Health Crunch, including pecans, pumpkin seeds, coconut flakes, a little sweetening, and a little salt. It’s gluten free, very low carbs, high protein, high fiber—ie, a perfect snack for Bisi. Now we just have to get her to like it.

Gluten-free baking products:  As I mentioned in a previous post, I love the products made by Bob’s Red Mill. But, as my friend Emily Moore, author of the diabetes blog Icarus and Daedalus, commented on that same post, gluten-free products often have as many if not more carbs than regular products. Fortunately, Bob’s sells several nut-meals that are very low carb, and that can be substituted for most other flours (though the consistency is moister). The one we’ve used the most so far is almond flour, though hazelnut is also good.

Breads:  Some of the gluten-free breads (I won’t name names) really shouldn’t be called bread. Instead, think of something that has the consistency of flavorless, unsweetened pound cake. But so far I’ve found two brands that Bisi really likes: Udi’s and Glutino. You have to check the labels of each kind, some are higher carb than others, but the ones we buy have 10 or 11 carbs per slice. That’s half the amount of the regular bread I buy for Jamie. Often, if I’m making a grilled cheese for myself, I’ll voluntarily choose the gluten free.

Suggestions Needed: Do you have any suggestions for good, gluten-free, relatively low carb snacks and/or desserts? Either sweet or not? If so, please pass them along. Bisi is constantly deciding that she doesn’t like a snack she once liked, so we are in constant need of new ideas.

The Sibling's Side of the Story

I haven’t talked all that much about Jamie, our 8-year-old son, in these posts, but not because Bisi’s diagnosis doesn’t affect him. He has had to deal with the fear of Bisi and me suddenly disappearing to go to the hospital; with the attention before meal times shifting dramatically in her direction, as we talk about what she’s going to eat, test her blood sugar, and give her some insulin, and with the worry and sense of fragility her diagnosis has brought into our lives (even if he wouldn’t express it that way). He asked me once if Bisi’s diagnosis meant that he could get diabetes too. I told him that anyone can get T1D, but that it’s not likely that he will. The truth is, he is at greater risk, because he has a first-degree relative with T1D. But if you had sat me down a year ago, explained T1D to me, and asked me which one of my children seemed more likely to get it, I would have immediately said Bisi, because of the way her moods fluctuate when she’s hungry. This is not based on anything scientific, but it just means that I am not going to spend my time worrying that this will happen to Jamie.

I think it’s probably a good thing that all of us are eating less sugar than we used to. But I also don’t want to limit Jamie just because there are limits on what and when his sister can eat. My very possibly imperfect solution so far has been to let Jamie have some treats when he’s not with Bisi. He and I have a standing date at the local frozen yogurt shop while Bisi’s otherwise occupied; and we follow a don't tell, hope she won't ask policy. Or, when he’s having something that she can’t have at home, I try to come up with a substitute she’ll be excited about, or excited enough about. So, say, if he’s getting a hot chocolate, I’ll make her one with stevia (a natural sugar substitute made from the leaf of the stevia plant, which to me seems more inherently healthy than aspartame or saccharine). 

Yet still, nothing drives Bisi crazier than the feeling that Jamie is getting something that she can’t have—even if it’s something she doesn’t want. Whatever food-related anger she has—and she must have a fair amount—she focuses intensely on Jamie. She’s furious if he starts eating before she does, while she’s still waiting for her insulin to kick in. She can’t stand it if he gets a more appealing dessert than she does. I feel like Mark or I could be across the table eating an ice cream sundae with whipped cream and sprinkles and she wouldn’t care, as long as her brother is eating the same 13 carb frozen yogurt that she is. These are typical sibling dynamics in action: if something is happening to you, you want it to happen to your sibling too. (I remember when my sister once got a hair cut she hated and kept on pointing at me and yelling, “Cut her hair!”, as if my having a terrible hair cut were the only thing that would make hers bearable.) Yet the fights over food feel especially fraught, because what they’re really about is that Bisi’s facing something difficult that Jamie doesn’t have to.

Jamie usually reacts to Bisi’s food outbursts with a look of detached bemusement.  But he loves her and occasionally he does something very sweet for her. One day we were sitting having snack, and Jamie ran up to his room and came down with $10 from his stash and handed it to Bisi. (We give both kids $3 of allowance each week, and expect them to use that money to buy themselves the things they want, in between Christmas and their birthdays. Jamie never spends his; whereas Bisi almost always spends hers the moment she gets it.) I asked him why he’d given her this unsolicited gift and he said, “Well, because she’s going through a hard thing. Diabetes is hard, isn’t it?” Another time, he decided he wanted to bake cookies, and  said he wanted to make them gluten free, so Bisi could have them. We looked through some recipes and settled on one from Bob’s Red Mill (whose products I love—more on that in another post), printed on the back of a package of teff flour,  made from the seeds of a type of grass native to North Africa.  Jamie completed every step of the process himself, and in the end, the cookies were delicious—nutty-tasting and not too sweet. The only person who didn’t like them was …  Bisi. But even a six year old can understand the idea that it’s the thought that counts. And for that day, at least, sibling harmony reigned.

***

Jamie’s Cookies for Bisi

(I altered the recipe I found on the back of the package of Bob’s Red Mill teff flour; the orginal recipe is from www.lesliecerier.com)

1 1/2 cups teff flour

½ teaspoon sea salt

½ cup coconut nectar (the original calls for maple syrup, but coconut nectar is supposed to be better for diabetics because it causes a more gentle spike in blood sugar)

½ cup coconut oil (Bob’s Red Mill package calls for canola oil, which a naturopath recently told me is terrible for everyone.)

1 teaspoon vanilla

1 cup peanut butter

Preheat oven to 350°F. Set aside an ungreased cookie sheet.

In a large bowl combine dry ingredients, set aside.

In a food processor blend coconut nectar, oil (you’ll have to melt it first), vanilla and peanut butter. Add the wet ingredients to the dry ingredients; blend well. Shape dough into walnut size balls. Place on cookie sheet and flatten gently with the tines of a fork. Bake about 13-15 minutes. Cool on wire rack.

Yield: 24 cookies

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