About six months after our daughter, Bisi, was diagnosed with diabetes, in 2012, my husband, son, and I were all tested through TrialNet to see if we too had autoantibodies showing that the autoimmune process of type 1 had begun. As I wrote at the time, all three of us tested negative. My husband, Mark, and I were told that we didn’t need to be tested again—the likelihood of us developing type 1 in our forties and with no autoantibodies was vanishingly small. But we were told that our son, Jamie, should be tested again every year until he was 18.
But for five years, we didn’t bring him back for testing, partly because we were busy with other things and put it on the back burner. And partly because it seemed like even if he did test positive, there really wasn’t anything we could do—developing type 1 diabetes would be an inevitability, one that we wanted to ignore and face as late as possible.
Recently, though, I learned about a Facebook group called Prevent Autoimmune Disorders, and an associated web site, PreventT1D.org. The information shared there—of people with one or more autoantibodies who seem to have held off or at least delayed the arrival of T1D—is anecdotal. But to me it was hopeful. The group’s purpose is to help people share resources, gather information about what people have tried, and share their own stories.
The group grew out of the work of Sonia Chritton, who was pushed into the world of diabetes when one of her two sons was diagnosed with T1D at age 1, twenty-five years ago. Then, her other son, Ben, tested positive for two autoantibodies at age 11. (People with two or more autoantibodies are now considered to have stage 1 type 1 diabetes; stage 3 is when people start exhibiting the classic signs such as thirst, having to urinate frequently, and weight loss; according to TrialNet, almost everyone with two or more autoantibodies will progress to full-blown type 1 diabetes. In general, the more autoantibodies you have, the more aggressive the autoimmune attack, and the sooner you’ll be diagnosed.) Chritton was told that her son would most likely develop type 1 within a couple of months. So she reached out to all the experts she knew in the diabetes community and asked them: what would you do if your child were in this situation? She received a whole range of replies, from the endocrinologists, immunologists, and researchers she had come to know. One suggested high-doses of anti-oxidant green tea. Another suggested that her son go gluten free. Others suggested probiotics, a multivitamin with zinc, vitamin D supplementation, and taking high levels of DHA (Docosahexaenoic Acid), a type of omega-3 fatty acid naturally found in the body. The basic goal of the supplementation was to reduce Ben’s inflammation level, which was high, and thereby keep his body from attacking its own beta cells. Through trial and error, Chritton put together a “cocktail” of supplements (see the current version here), involving lots of DHA and some extra Vitamin D, among other things. As Chritton remembers, “We gave him the cocktail and lo and behold, by the next visit, his antibodies had reversed.” That first positive autoantibody test was nineteen years ago, and Ben still has not developed type 1. Chritton has come to believe that the most important elements of the cocktail are omega-3s, vitamin D, and a multivitamin containing zinc (the omega-3 supplements her family now takes include both DHA and EPA, another type of fatty acid). As her son grew up, he also started taking an aspirin every day for its anti-inflammatory properties. Over the years, Ben has gone off the cocktail a few times, once as a teenager, because, well, he was a teenager; once in college; and once a couple of years ago. In each case, he became autoantibody positive, but when he resumed the cocktail, his autoantibodies once again disappeared.(Please note: PreventT1d.org has ‘big disclaimers’ to emphasize that they are not qualified to make recommendations regarding the cocktails, and that people should do their own research and decide what is safe for them and their families.)
Matt Pressnall, a Web developer in Seattle, found out about Ben’s cocktail while searching the Internet for something —anything—he could do, after he and his five-year old daughter were found to have multiple autoantibodies. His older daughter had been diagnosed with type 1 in the summer of 2014. A few months later, Pressnall, his wife, Carlin, and their younger daughter all got tested through TrialNet, and found out that their daughter had four out of five autoantibodies, and that Pressnall had three out of five. As Pressnall described his thought process to me: “It was very frustrating that there was nothing I could do, and I knew that we were both going to come down with it. They were dark days; I cried for a few days, I swore a blue streak at the TrialNet person who called, because I didn’t expect her to give me those results. To be loaded with, hey, you’re going to have three people in the house with type 1….. I freaked out and did a ton of research.” Eventually, his research led him to Sonia Chritton’s work and Ben’s cocktail. “I thought, Nobody else is talking about this; this is fake, it’s too good to be true.”
Before starting on the cocktail, both Pressnall and his daughter wore CGMs to track if their blood sugar levels were spiking after meals. If his younger daughter ate a high-carb meal, her blood sugar would go up to 220-240 and stay there for a couple of hours. After six weeks on the cocktail, they tested things out by giving her a “giant carb fest,” involving a 12 ounce Fanta, a big bowl of spaghetti, and a large piece of chocolate cake. Her blood sugar peaked at 205, and immediately started going down again. These days, four years after Pressnall and his daughter discovered they had multiple autoantibodies, they are still diabetes-free, and their blood sugar rarely goes above 150, even when they eat meals full of carbs. Still, the potential of a diagnosis is something that’s always in the background. “Ben now is back on the cocktail and he’s antibody free. He’s a lucky dude in that he can jump on it and drop all his antibodies, and be fine. My daughter and I are not in that same boat, but I know for a fact that it has helped us a lot.”
Although the success of using this cocktail to prevent or delay the onset of full-blown type 1 diabetes is anecdotal, there is some evidence that the inflammatory process is what leads to autoimmunity, and that the ingredients in the cocktail can work to tame that process. In the years after Chritton’s son was diagnosed with type 1, she worked at the Barbara Davis Center for Diabetes (where her son was being treated), founded the Children With Diabetes Research Foundation, and published more than two dozen articles related to type 1 and its prevention (some of them are under the name Sonia Cooper). One of those articles, published in 2004 in the journal Diabetes, showed that high-risk children with high levels of inflammation (as measured by elevated C-reactive protein levels, or CRP) were more likely to progress to having type 1 than children with lower levels of inflammation. Chritton told me that she came up with the idea for the study after coming across articles tying the development of MODY (maturity onset diabetes of the young) and gestational diabetes with inflammation level. “A light bulb went on, I was so excited,” Chritton told me. She reached out to her son’s doctor, Peter Chase, and asked him: “‘Has anyone looked into this for type 1?’ We looked and looked in PubMed, and realized no one had ever done it. And I said, ‘We could do that!’ I ended up hauling all these freezer trays out, filled with samples given by kids in the DAISY study; I thawed them out and we tested the various samples for levels of CRP. And that’s where we found out that there is a statistical correlation between inflammation and progressing to type 1. So then I thought, What can we give to lower inflammation?”
Michael Clare-Salzler, an endocrinologist and researcher at the University of Florida Diabetes Institute who focuses on the immunopathogenesis of type 1 and other autoimmune conditions, told me that there’s “a good foundation of science” behind the idea that omega-3s can suppress inflammation. He points to the work of Charles Serhan at Harvard, and to his own work in the lab (he was one of the original doctors who advised Chritton on the cocktail). As he described it to me, his lab compared blood cells of those who had taken omega-3 supplements to those who hadn’t. “We stimulated those cells with a factor that would induce inflammation (we gauge inflammation by measuring the output of these molecules called cytokines). We did a correlation analysis between the two populations, and what we saw was that the folks with high levels of omega-3s because of their supplementation had significantly reduced production of these cytokines. This demonstrated to us that the omega-3s worked to shut off the inflammatory response.” Chritton goes further, and points to a 2003 study showing that Norwegian babies who took omega-3s in the form of cod liver oil (which contains vitamin D along with both DHA and EPA) were significantly less likely than the control group to develop type 1.
Dr. Clare-Salzler describes the inflammatory process that eventually results in type 1 diabetes as a “slowly progressive smoldering” in the pancreas. The goal of the cocktail is to put out the fire. As Chritton told me, “Something is causing inflammation in your body. All these years people have been trying to figure out: Is it a coxsackie virus, gluten, permeable gut membrane issue, you can go on and on. The bottom line is, if you cut your finger, what do you do, you put a Band-Aid on it. We don’t know what the trigger is, but we know how to fix inflammation, and that’s to give an anti-inflammatory.” Chritton estimates she has been sharing the details of the cocktail with 10-12 people a year for more than fifteen years, and during that time, she says, “I’ve had nothing but success stories with people who have taken high dose DHA. The only negative story I can think of is someone like my son who went off to college and stopped taking it.”
Pressnall points out that different people respond to the cocktail in different ways, perhaps depending on which autoantibodies they have, and the strength of their body’s autoimmune attack. “For some people, supposedly, this will totally reverse things for them, for some it prevents continued progression, and for some it delays. I think maybe in our case it’s delaying.” But the timing of a T1D diagnosis is important. In this era, when the diabetes landscape is changing so quickly, a delay of only months can make a difference. (A case in point: up until recently we were treating Bisi’s lows as usual; but as of about two months ago her t:slim insulin pump became integrated with her CGM and now automatically shuts off when hypoglycemia is predicted, making her lows less steep and scary.)
Over the years, Chritton has been working to build studies that would bolster the anecdotal evidence with hard data. “We would love to engage with the scientific community and see if we can take these anecdotal stories and come up with something that will lead to a bigger and better clinical trial,” she says. Through her Children With Diabetes Research Foundation she recently started a field study on prevention, working with the organization GrassrootsHealth. People who are autoantibody positive are supplementing with omega-3s and vitamin D, and doing quarterly testing of their A1C and C-reactive protein levels, among other measures. So far about forty are enrolled, with a goal of a hundred by next summer. Meanwhile, the Diabetes Research Institute in Miami has recently started a clinical trial to study whether omega-3s combined with Vitamin D can stop the progression of the disease for people who have already been diagnosed with type 1.
After years of sharing the information informally in a less public way, Chritton’s hoping that the Preventt1d.org site and the associated Facebook page, both of which she works on with Matt Pressnall, will draw more people to try the cocktail and tell their stories (the cocktail is not a product that’s sold on the site or linked to from it; rather, the site lists the various ingredients—which are all common supplements—and readers have to figure out where to buy them for themselves). As Pressnall told me: “I felt like having this information and not sharing it was criminal, seriously, because I was in this spot where I felt bleak, and I didn’t want anyone else to feel that way. I wanted to provide hope for folks. I think I’ve given folks the ability, if they are interested, to find that hope.” And, he points out, it’s an intervention that’s relatively inexpensive, and carries essentially no risk. “Everything on that list is incredibly safe to take, why wouldn’t I do it? Wouldn’t you do the bare minimum if you knew that there wasn’t going to be anything that would negatively affect your kid, and if you had a chance for success?”
We finally did bring Jamie back for testing, and he was negative again. And once again, TrialNet asked us to bring him back in a year. Will we wait another five before going back? Knowing about Ben’s cocktail, my guess is that we will procrastinate a little less before ordering the next blood test. Because even if Ben’s cocktail isn’t a sure thing, it’s something. And it’s something that I think we would try.