IJMSC Author Spotlight: Tyler Titcomb, PhD, RDN

Author Tyler Titcomb, PhD, RDN, has had 2 papers published in the International Journal of Multiple Sclerosis Care (IJMSC): Association Between Improved Serum Fatty Acid Profiles and Cognitive Function During a Dietary Intervention Trial in Relapsing-Remitting Multiple Sclerosis and Facilitators of and Barriers to Adherence to Dietary Interventions Perceived by Women With Multiple Sclerosis and Their Support Persons. Dr Titcomb is an assistant professor in the Department of Dietetics and Nutrition and a registered dietitian in the Department of Neurology at the University of Kansas Medical Center. He is also closely involved with the Consortium of Multiple Sclerosis Centers special interest group for dietitians and nutritionists. He recently sat down with IJMSC to talk about his research, career path, and diet and multiple sclerosis.

International Journal of Multiple Sclerosis Care (IJMSC): How did you get involved in multiple sclerosis (MS) research?

Tyler Titcomb, PhD, RDN (TT): Are you familiar with [US Marines Corps Base] Camp Lejeune [in Jacksonville, North Carolina,] and the water contamination problems there? Thirty-some years ago, I think it was 5 out of 6 wells on the base were contaminated with multiple environmental toxins. I’m the first person in my family in 3 or 4 generations who did not live on that base. I’ve seen people in my family develop chronic illnesses and pass away at very early ages from those exposures, and the things that have been particularly detrimental in my family have been neurological diseases, but MS does not affect my family. As I was thinking about what I want to research, I really wanted to do something to help prevent what happened to my family from happening to others, but I didn’t really want to research something that was close to home, like Alzheimer [disease] or Parkinson [disease] or brain cancer….

When I was accepted to graduate school, I had a plan to work in an MS lab at the University of Wisconsin [in Madison] with an investigator who studied vitamin D in the [experimental autoimmune encephalomyelitis] model. Unfortunately, between me being accepted and actually getting there…she decided to…retire. I had to [pivot], and I found a different lab that was not MS focused. When I was looking for my postdoctoral [placement], I reminded myself of what I originally set out to do, which was MS research. At that point in my life, I was geographically bound to Rochester, Minnesota…and I saw [the University of Iowa in] Iowa City and a postdoc [program] to research diet in the context of MS that just met my criteria. I found my way back to it.

IJMSC: What attracted you to diet? Had you done any previous work on diet?

TT: That’s actually my training. I’m a registered dietitian, and my PhD is in nutritional science. The thing that always struck me when I was learning about dietetics, or even during my PhD, was that there were a number of conditions where we clearly understand the nutrition implications, like diabetes, chronic kidney disease, celiac disease, for example. But then there’s a whole other host of diseases that we do not understand well nutritionally at all. That was also part of what drew me to MS: This is a disease where we don’t understand anything nutritionwise about the disease.

IJMSC: You've published 2 papers with IJMSC and have 1 in prepublication. How did you develop these papers? How did you get involved?

TT: “Facilitators of and Barriers to Adherence to Dietary Interventions Perceived by Women With Multiple Sclerosis and Their Support Persons” came about because during the pandemic, human [participant] research was not allowed for a period of time. Essentially, I was looking for alternative data to analyze and publish on so I could keep my postdoc [degree] going. My adviser mentioned that we had interviews from 2 studies between participants and an adult support person, like a spouse, an adult child, a friend, someone to be an accountability buddy during their trial participation. I thought that this might be a good opportunity to try to understand some of the things that helped people with MS implement a diet and some of the unique challenges to people with MS adopt[ing] a new diet. Both of the studies utilized registered dietitians to implement the behavioral change for diet, and that came up time and time again in the interviews as something that people thought was a facilitating factor. This is interesting because dietitians aren’t often included on MS care teams. When a person with MS wants to change their diet for whatever reason, they don’t have that support structure [in their care team].

"Both of the studies utilized registered dietitians to implement the behavioral change for diet, and that came up time and time again in the interviews as something that people thought was a facilitating factor. This is interesting because dietitians aren’t often included on MS care teams. When a person with MS wants to change their diet for whatever reason, they don’t have that support structure [in their care team]."

I am quite excited by the pending paper. I view [MS care] through my lens as a dietitian all the time, and the thing that strikes me is that there’s a lot of effort going into studying MS from the perspective of very specific diets or dietary patterns: Paleo, Mediterranean diet, MIND [Mediterranean-DASH (Dietary Approaches to Stop Hypertension) Intervention for Neurodegenerative Delay] diet, fasting, ketogenic diet. But what I don’t see at all is someone taking a step back and looking at MS through the lens of conventional nutrition wisdom—so malnutrition, nutrition-related comorbidities, food insecurity. MS is a condition where folks probably have high medical expenses; they may or may not have reduced income. Maybe food insecurity is a bigger issue than we realize in the MS patient population. I am only aware of one other paper that looks at food insecurity, and it found a high prevalence. Our paper looks at food insecurity and compares people with MS who live in rural vs urban environments in Iowa. What we found is that somewhere along the lines of 20% of our study sample had at least mild or moderate food insecurity. That’s a pretty big number.

IJMSC: With the focus on MS care and research into social determinants of health, you would think that would be top of mind. Why do you think this is an area where we haven't seen much research?

TT: To the best of my knowledge, I’m among the only [registered dietitian] PhDs in the entire country who studies MS. I think one of the things that has happened is that there hasn’t really been the expertise on nutrition outside the realm of treatment or therapy in the MS space. I shouldn’t speak quite so broadly, as I’m sure there are other folks who are interested in this. But I really think the idea, or maybe the collective wisdom, in the MS space for a long time was how can we better treat the disease rather than how can we improve the lives of people living with the disease. People like myself and [Solange] Saxby, my coauthor who is also a dietitian, wondered, how can we take a step back and look at things differently to try to speed up the progress of getting nutrition included in MS care? Because it’s going to take a long, long time, if ever, to show that there’s one diet that’s better than others for people with MS. That is a 30-year question, but identifying high rates of food insecurity, and we already know what to do about that, or high rates of malnutrition, and we already know what to do about that, there’s a much more rapid turnaround time for being able to do something and make change.

IJMSC: Your scoping review in Clinical Nutrition ESPEN was about malnutrition and MS. Was that your first step heading into this research area?

TT: Yes, I’m trying to shift my focus from therapeutic diets to trying to understand the things that are affecting people with MS that I can, as a dietitian, apply my knowledge and training to and improve. Malnutrition is a condition that often happens in times of poverty, war, or famine, but the interesting thing about malnutrition is that there is also disease-specific malnutrition caused by chronic inflammation, immune dysregulation, or impaired nerve impulse, conditions that cause additional energy to be consumed by the body. All three of those things I just described happen in MS, so it is entirely possible that the rates of malnutrition, disease-specific malnutrition, in MS are high. In that scoping review, we didn’t find a lot of evidence on this question, but one study that we discovered used the [Global Leadership Initiative on Malnutrition] criteria, the gold standard diagnostic for malnutrition. That study found that 15.5% of their sample of people with MS had malnutrition, and 86%, if I’m recalling the number correctly, were at risk for malnutrition. You would expect numbers like that maybe in a geriatric, cognitively impaired population. The study sample was not an older adult population. So it’s entirely possible that malnutrition, like food insecurity, is something that’s very underappreciated in this patient population. In fact, I just submitted a pilot grant application to the CMSC [Consortium of Multiple Sclerosis Centers] to do a study looking at the feasibility of malnutrition screening in MS. Fingers crossed on that. Hopefully, we can get the next step going in that research line right away.

IJMSC: Do you think it’s a question of time, even when you have the multidisciplinary clinic? I think people would say that medical issues take precedent, and they might be putting diet, as something that hasn’t been central in MS care, off to the side while they deal with cognitive defects and neurological issues and MRIs and DMTs [disease-modifying therapies]. Have you seen any clinics where diet is a part of the treatment team or the care plan?

TT: I don’t think you’re incorrect in the assumption that the medical concerns are chief priority, and there are also insurance billing issues and such. I’m the vice chair of the dietitians’ interest group of the CMSC, so I think I have a relatively decent grasp on the number of dietitians in this country who serve people with MS and the number of institutions that have dietitians. I know of 5 institutions that have a dietitian on staff in their MS center, with me being one at the Center for MS Care here at KU Med [Kansas University Medical Center in Kansas City]. There are not many. I think the idea or understanding that nutrition is an important concept for people with MS is increasing. I hope that there are 10 times more dietitians in the MS space in the coming years. Part of that is that a workforce of MS-aware dietitians needs to be developed. One of the great things that I get to do at my new job at KU Med is train future dietitians. I’m hoping that, in a very small way, I can help develop that workforce. One of the ways I’m going to do that is to offer to pay any of the graduate research assistants who work for me and who are dietitians to take the MS Certified Specialist exam.

"Part of that is that a workforce of MS-aware dietitians needs to be developed. One of the great things that I get to do at my new job at KU Med is train future dietitians. I’m hoping that, in a very small way, I can help develop that workforce."

IJMSC: That’s a good start. What would be a starting place for the IJMSC and CMSC community? What do clinicians need to know about diet and MS?

TT: That is such a broad question, and there are so many things I want to say, but I think the message I’d like to pass on is that it’s a bigger problem to let the status quo continue, where people who want to change their diet do not receive support in doing so because that pushes them to do like anyone else, go to Dr Google, where they can get exposed to all sorts of misinformation. In another recent paper of mine, we pulled discussion threads from Reddit, the MS subreddit, and we looked for any mention of the word diet. People with MS on the subreddit are not talking about the American Heart Association heart-healthy diet or the Dietary Guidelines for Americans; they’re talking about other diets that tend to be quite restrictive, may increase risk for micronutrient deficiencies or malnutrition or disordered eating, and tend to come with marketing that we’ll just say is problematic, making false promises and different things like this. I don’t think the role of diet in MS is to heal or treat MS. I think it’s to address some of the other issues and improve well-being and quality of life. If we can prevent some comorbid conditions or maybe treat comorbid conditions along the way, then that’s excellent. And if it just so happens that I’m wrong and [we find that] diet does heal, cure, or treat MS, well, great. We’ve been doing it the whole time to address these other things.

Ruth Ann Marrie has the best paper I’ve seen, which looks at cardiometabolic comorbidities, all of which are nutrition related. The presence of one of those increases the time to ambulatory disability by 6 years. That is an astronomical number, in my opinion. If we were to prioritize treating those comorbid conditions, I don’t know if we’d change that timeline, but I think that’s a worthwhile question to answer.

IJMSC: I know you worked with Terry Wahls, MD, MBA, at the University of Iowa. What did you learn from your time there?

TT: Dr Wahls has really shone a light on this as a topic that we should be considering. She was my postdoctoral adviser at the University of Iowa, and I really had a great experience there and learned a lot about MS and the difficulties and challenges faced by people with MS in changing their diets. The thing that really struck [me]…is the lack of consideration for conventional clinical dietetics. And I understand that there are many problems—time, insurance, staff availability—but fundamentally, if we break down what the core issue is, dietitians are allied health professionals, defined by [the US] Congress [42 CFR 410.72], who can do medical nutrition therapy, which is again defined by Congress [42 CFR 410.130]. We’re the only nutrition professionals [that I am aware of] who can do that. So the lack of dietitians in the conversation about MS is really what has created the whole problem, per se, of nutrition in MS. If dietitians had had a seat at the table much earlier, I think there would have been a lot fewer of the issues that have arisen in the nutrition and MS space. I’m not trying to say that any of these MS diets, for lack of a better term, are inherently bad. I just think that some of them differ tremendously from our conventional nutrition wisdom, and it’s strange to me that those are what is being studied when our conventional nutrition wisdom is not being studied.

I have this fancy of writing an opinion paper called “Nutrition and MS: No Need to Reinvent the Wheel.” We jumped over the basic nutrition all the way to the restrictive diets, and we haven’t had the time or the research focus on nutrition, the basics, on the building blocks of good nutrition. If 15 years, 20 years down the road, one of these diets is shown to definitively be the diet for MS, I will personally think that’s great. I just don’t think we’re anywhere close to having that understanding. The one exception might be the Mediterranean diet, and that is still a maybe from me. Outside the context of MS, that’s the most well-studied diet; we understand the benefits of the Mediterranean diet really well. Inside the scope of MS, it still is the No. 1 most studied diet, and it does seem to show some pretty favorable findings across a wide variety of studies, and it is the only diet I’m aware of where there is a convincing mechanistic study published by Ilana Katz Sand at Mount Sinai [in New York, New York]. If a person with MS were to come to me and say, “I really want to follow one of these diets that’s being researched for MS,” that is the one I would recommend professionally as a dietitian. But if someone with MS were to come to me without this preconceived notion, I might include Mediterranean principles in nutrition education and counseling, but more importantly, I would try to meet that person where they’re at. MS or not, if a person comes to me as a dietitian and they eat fast food 3 times a day, we’re not going to have success implementing the Mediterranean diet tomorrow. It’s about meeting that person where they’re at and understanding their nutrition history, personal preferences, challenges, barriers, needs, and concerns and putting that all together to make an achievable strategy to improve their diet quality.

IJMSC: It’s about the push toward personalized medicine, seeing the individual in front of you, and, as you said, making a plan for that individual and where they are.

TT: When someone turns a complete 180° and goes full steam ahead with a new dietary pattern that rarely works…. The important thing to understand when it comes to a diet, especially if you’re trying to make a change, if you fall off the wagon, you should not…punish yourself for it; just get back on the wagon. And some of the messaging in the MS diet spaces is really problematic: “If you don’t adhere to this component, you’re going to have a symptom flare.” That fear-based messaging around food is really problematic.

IJMSC: How does research influence clinical care? How does clinical care influence research? How do they work together?

TT: In the space of nutrition, especially in the context of a disease like MS, where we don’t have good foundational knowledge, it’s going to take a long time for research to change conventional nutrition wisdom. The field of dietetics understands what a high-quality diet is, but nutrition is a field that changes all the time, so we’re always improving our understanding, which is why recommendations may change over time. I know that is frustrating to a lot of people, but it’s just the nature of [the field]….

Nutrition research influencing clinical practice in the context of MS is a long way out, but clinical practice could do a lot to help move the needle on the research—things like doing very simple nutrition screening. If a large MS center were to implement a nutritional screen, you know, whether it be malnutrition or dieting practices or food insecurity, within a year, we’d have thousands of data points.... Now imagine if every large academic center across the country did this. We’d have tens of thousands, hundreds of thousands of data points, and we would start getting longitudinal data. If we want to change the conversation about nutrition in MS clinical practice, I really think it has to start in the clinics. That’s where we’re going to get the data.

"Nutrition research influencing clinical practice in the context of MS is a long way out, but clinical practice could do a lot to help move the needle on the research—things like doing very simple nutrition screening. If a large MS center were to implement a nutritional screen, you know, whether it be malnutrition or dieting practices or food insecurity, within a year, we’d have thousands of data points...."

IJMSC: What research are you working on now? What projects are you developing?

TT: I just started at KU Med, so my research isn’t fully off the ground yet, but there are 3 things that I’m focusing on right off the bat. One is referring to nutritional risks in MS, so malnutrition, food insecurity, disordered eating, things like that. I am currently working on putting together a survey study to do in our MS center. The second one is more in line with my career transition award [from the National MS Society], which is looking at the prevalence of micronutrient deficiencies and dieting and malnutrition in the context of MS. I just published a scoping review, which is from that career transition award. I also just published a systematic review looking at the prevalence of dieting as a behavior in the MS population. We found that in the United States, [approximately] 19% of people with MS are following a diet. If you’re a provider, that means 1 in 5 of your patients may be following a diet, and you may or may not understand what they’re doing. It’s pretty alarming. The third area is more of a long-term vision, but it’s one of the first things I’m going to try to write a grant for, trying to get into the mechanisms by which nutrition and diet might affect MS. The paper by Ilana Katz Sand that I mentioned earlier shows a convincing mechanism. I think there’s a lot of opportunity in that space for study. We talked about what impacts your immune system. Your No. 1 daily exposure is your diet, and we know that there are lots of nutrition implications and how they modulate the immune system and immune function. I think there are lots of unanswered questions in that space. That’s ultimately where I’d like to go. And I think I’m going to try to marry my PhD topic with my current research area, so vitamin A in the context of MS. There are some interesting preliminary results in that space that I think I can improve on.

IJMSC: The field is wide open. One of the pillars of IJMSC and CMSC is multidisciplinary care. We’ve touched upon how dietitians could be better integrated into care teams and multidisciplinary care clinics. There’s a lot of opportunity in that space. What would your ideal integration look like? Would it be a registered dietitian on every care team?

TT: In Tyler’s world, for sure, but that’s not realistic. I think one of the great things about dietetics is that it is a field that can be done through telehealth. And there are a number of dietitians [in] on-demand–type organizations. I think that’s probably the easiest way to overcome that barrier. Or use a tool like the Academy of Nutrition and Dietetics Find a Nutrition Expert tool…to find a dietitian whom a provider trusts to refer to, and then that dietitian can provide telehealth…. And then there will always be the question of insurance coverage. Most of the time, the answer to that should be yes, but I can’t say all the time. Blue Cross Blue Shield is good, and they typically will provide coverage for ICD-10 [International Classification of Diseases, Tenth Revision] code Z71.3, which is personal nutrition counseling. The person doesn’t even have to have a nutrition-related comorbidity. To get coverage, a provider just has to make the judgment that this person would benefit from improving their diet. If there are any comorbidities that necessitate what’s called medical nutrition therapy—chronic kidney disease, diabetes, for example—if a person’s not already seeing a dietitian for those, that’s an easy referral.

IJMSC: Are there resources that you would point MS clinicians to if they wanted to start providing information or learning more information for themselves?

TT: The first thing I would point a provider to would be the Academy of Nutrition and Dietetics online tool to Find a Nutrition Expert, where you can punch in your zip code and it will tell you all the dietitians in your area who are taking patients, if they’re in that database. The academy also has a tool for ICD-10 codes [from which] dietitians frequently get insurance reimbursement…. If a provider wanted to provide some very general nutrition education or guidelines, recommendations, Dietary Guidelines for Americans currently has some really good educational resources that providers can download and print for free. They’re patient facing. The American Heart Association also has a heart-healthy diet. I would go to one of these existing organizations that makes nutrition recommendations.

Be sure to keep an eye out as we continue to spotlight other IJMSC authors this fall!