Interview with Jackson Dunckel

Yeah, so my journey to diagnosis was long and complicated, as I'm sure it is for virtually everybody with the disease. Namely, as a college graduate, I decided to travel after school and ended up climbing the Jebel Marra, an extinct volcano in eastern Sudan, where I got amoebic dysentery. And as you probably know, the treatment for amoebic dysentery is a massive dose of effectively poison, and then it takes about two to three weeks to recover. And very interestingly, the only food available while backpacking effectively, that's what we were doing, backpacking in the, was wheat porridge served with a meat sauce, a little tiny bit of meat sauce to make it flavorful. So I took this poison and then nourished myself for two weeks while climbing the volcano with wheat porridge. After returning, I had a lot of, I came, I didn't return, I actually went to go work on a farm in Germany and had all sorts of horrible things happen. One, I was starving to death, so I ate like a horse, and the farmers, the father of the family, really thought of me as a loss maker because I ate too much. And so you ate them out of house and home, which is hard to do when they're farmers. And then secondly, I had all sorts of kind of physical ailments, aches and pains whatever, and never got properly diagnosed. And you know, scroll forward 10 years later, I was still having issues with my digestive system, and so I went to the Tropical Disease Center in San Francisco. They diagnosed nothing. I went to the Tropical Disease Center in London, obviously one of the best tropical disease centers in the world, they diagnosed nothing. And so I said to myself, well, you know, it's a form of, you know, you got poisoned and you're just going to have to live with some kind of problem with your gut for the rest of your life. Went to, moved to New York, and a very elderly doctor, a do I like to call him the doctor of doctors because while he was examining you, he would constantly pick up the phone to other doctors who were calling in with patients who were in severe distress and advise them what to do. And he gave me a celiac panel and said, you've got the trigger. It's obviously not determinative whether or not you're a celiac, but you could try to not eat wheat and see what happens. I stopped eating wheat. It was very hard, particularly there, but did he mention a gluten-free diet or did he say just stop eating wheat? Do you remember? He described, he actually being a very nice, kind of an educational doctor, described celiac disease perfectly. So celiac lying down flat and how if I really wanted to prove it, I need a colonoscopy and an endoscopy and then they take multiple biopsies. And so actually described the whole, so I'm sure he said gluten allergy because he did the full description for me, whereupon I said, you know, not really super excited about the endoscopy. And he says, well, you can stop eating wheat and see how you feel. And all of my life, I had never, I was quite skinny, I'm still very skinny, but I was extremely skinny. I'm 6'7" and I weighed 170, 180 pounds, which was normal for me. It never really had any real effect of being that skinny. I was very athletic, but I could never put on muscle. It frustrated my basketball coach enormously. In my senior year, he put me on a diet of three eggs after every dinner. I would drink like Rocky, I drink raw eggs to build up those muscles, pre-salmonella obviously. And then he would force me to work out and lift weights and da da da, and I gained no muscle, I gained no weight. I was 160 when I graduated from high school, so I thought 180 was better. I quit within, I would say within six months, I had gained 30 pounds, I was 210. And so you're absorbing because you're absorbing your nutrients and your food right once you were diagnosed. And more interestingly, I actually noticed that I was gaining muscle mass, which I'd never done in my life. And that really was the key differential to me. And I stopped falling asleep in the afternoon. So I had a real problem. I was an investment banker, so I wasn't getting a ton of sleep, but nonetheless, I was between the hours of two and whatever four or five, I could barely keep my eyes open at my desk. And suddenly I was able to be functional the whole day, very functional. So it really increased my energy levels a lot as well.

So it was a massive change. It was extremely difficult because it was a, let's see, 1990, no, it was a 2002 diagnosis. I was back in the Dark Ages, 38 years old, and there wasn't, we discovered Udi's bread, it took us a very long time, we finally found it. And so it was quite difficult to work your way through the restaurants and to work your way through, you know, because in New York you're eating out all the time, so it's quite hard to figure. And then the shocking amount of wheat in our food system was also, you know, could not believe where they snuck the wheat in. So it took, actually to get it down, I'd say it took two to three years frankly. Right, so I was continually poisoning myself, but I at least noticed that I was poisoning myself and kept bobbing and weaving my way through the culinary landscape to get rid of the wheat. So that was the diagnosis at least.

Like diagnosis, frankly, it was just one guy, right? One doctor, so old school guy. Luckily you found him. Yeah, no, and it was very serendipity. I mean, it was my wife's OB-GYN's father. She said, 'Oh, Jackson will really hit it off with him, he's exactly the guy.' What's true, I love talking to him. So he's a very interesting person. So it was really more about a personal reference than anything, you know, it wasn't medically driven.

The biggest challenge is traveling, right? And while the cuisines of Japan and Mexico are a nice safe harbor in almost any town in the US, with some you have to be relatively careful, but at least you're kind of in a corn-rice environment. Everything else is just laden with gluten. You can't make a sauce in France, Germany, America without putting gluten in it. And the whole idea that you could never have gravy again as long as you live is really hard because gravy's good, gravy's fun. You know, my favorite poisoning example is the, forget exactly what the other ingredient was, but it's basically a cheese soup, like a broccoli cheese soup that they serve on the United flight from Houston to LaGuardia. And invariably it was 4 or 5:00 in the afternoon, I had just had three meetings, I'm running to the airport, I'm starving to death, and the only thing to eat is this soup, which of course I would eat with a question mark and then pay just dearly for days and days and days. The whole problem is, as you put it, being an ectomorph, you need massive quantities of calories. And learning how not to get hungry, not to get desperate, and if you do get hungry and desperate, to have a protein bar in your pocket, to know to go buy nuts and raisins at the airport before you get on the plane because they're going to starve you. Those kinds of adaptations to traveling really, I mean, that took 10 years, right? So although at home it probably took two to three years to kind of get yourself straight, learning how to travel with celiac was a really huge challenge.

Yes, I mean, I think the basic male attitude, especially as encapsulated working in investment banking, is suck it up, torture your body, and deal with the pain and suffering and work your way through it, right? That is the way we're taught to behave. We can question that but we won't. And so it's very difficult to learn to listen to your body first of all, and second of all, because and again maybe this is a personal failing rather than a gender failing, but taking the big issue with celiac for me was taking responsibility for my own health, which for whatever reason males tend to sub that out to their significant other, to their mother. And that is, I remember speaking to a therapist actually and they said, 'You have to do this yourself. You can't just sit back and wait for people to serve you gluten-free food. You can't sit back and assume that your health is perfect just because it has been your entire life. You have to assume that the gluten, the celiac disease has impacted you in some other way and you need to seek out help, but you need to do it yourself. You need to book the doctor's appointment yourself.' And that stuck with me. And that is like taking, first of all, listening to your body, and second of all, actually moving forward and taking responsibility for your own health, be it dentist appointments or simple things, is incredibly important. And very, at least in my case, I don't want to condemn the entire male gender, but in my case it was very hard to learn.

Well, what, and I do, I'm one of those people that actually speaks a lot about it, so you'll find me at corporate dinners explaining to an entire table what it is. And we like that. Yeah. It's that, and the one thing that I always say, I say, 'You have to understand it's an autoimmune disorder.' So the general reaction is, 'You can't possibly be a celiac, you're too skinny.' Like, well, there are large celiacs, there are small celiacs. You have to understand it's an autoimmune disorder. The way the body reacts to it is inflammation, and the body will react, everybody will react differently to it. And I also am very proactive about talking to, you know, I get labeled into the hypochondriac side of things, but talking to my doctors around, 'Well, this happened and then this happened, and aren't those two things linked together? And can't you look at me on a holistic basis instead of an ENT basis or a gastro basis or a gastroenterologist basis or a cardiologist?' I mean, it's all interrelated. So it's very hard in modern medical practice to get a holistic point of view of your health, and you have to basically advocate for it. So one, understanding everybody is different and autoimmune disorder affects everybody differently, and two, really advocating for yourself for treating you as an individual patient with problems in many different areas that you yourself know are interrelated, and you need to communicate that to your doctors or try to have a conversation with them at the very least.

Oh, I mean, I think it would be unbelievable because if avoiding gluten gives you energy and restores your ability to gain muscle and exercise more strongly and be more alert during the day, then you know what, but at the same time, knowing that in my case I presumably poisoned myself for 38 years, what kind of lingering problems there are because of that, right? So I think some of your research has shown, or some of the research that you've helped promote, have shown linkages to a whole bunch of different very serious diseases, and those will become more prevalent as you age, right? And so as all the toxins that you've absorbed over your life, including the gluten, start to manifest themselves. And so I think that to me would be the primary motivation. The secondary motivation would be, well, if I get poisoned, it would be nice to be able to take something to remove that instead of suffering for three days. And the suffering for three days is just the gastrointestinal discomfort, the bloating, and the sinus infection that I typically get afterwards lasts for months. So that obviously would be a knock-on effect. So all of that would be enormous. So any kind of a cure would be just a fantastic step forward for personal health reasons.

Yeah, the one thing I missed in the like personal responsibility angle of being a celiac is, of course, taking responsibility for what you cook and actually participating in shopping and preparing your own food, which again is a low viewed on the male scale of things, a low value-added activity. And to me, it's just so important and really adds a lot to your understanding of who you are, what makes you feel good, experimenting with food. So I have to say, it did feel a little bit like a punishment as you said when I was first diagnosed, having to order really, really bad wine in Irish pubs was always a terrible punishment. But hey, we helped launch the first gluten-free beer, I want you to know that there's been a lot of other beers. But in the end, I think the takeaway of responsibility and owning what goes into your body and how you manage that is a lifelong improvement, frankly.