Deciding to Raise a Gluten-Free Kid

The evidence is slight, and the diet sets her further apart from the other kids. But we chose to do everything that might improve our daughter's health after she was diagnosed with diabetes.

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When our daughter Bisi was diagnosed with type 1 diabetes (T1D), we spent three overwhelming days in the hospital figuring out the complicated glucose testing, carbohydrate counting, and insulin measuring regimens that now needed to happen at every meal. I think it was on our last day there that my husband, Mark, suggested we have Bisi try gluten-free, as well.

When Bisi got her 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 20 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 she 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 hints of a connection. 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 magazine reported on a Canadian study indicating 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 T1D -- 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 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 T1D, and the abnormal intestinal permeability that has been found in these patients could represent a contributing factor."

Essentially, the thinking is that people with T1D have different intestinal flora than those without (the thinking is similar for other conditions, including colic in babies and autism), and that their guts are more permeable. And Mark's thinking (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.

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 said, 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.

Do we know that the gluten-free diet is making any difference? 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.