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.
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
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