Bowel Moments

IBD Can Eat Me Episode 1 with Venus Kalami

• Alicia Barron and Robin Kingham • Season 1 • Episode 148

Share episode

Send us a text

Welcome to episode 1 of our series- IBD Can Eat Me guest hosted by Stacey Collins, IBD RD. In this series, Stacey will interview other Dietitians who also specialize in IBD. This week we welcomed Venus Kalami- board-certified pediatric Dietitian Nutritionist! 

What if the strict diet you’re told to follow does more harm than good? We sit down with pediatric dietitian Venus to unpack how nutrition in IBD can support health without sacrificing joy, culture, or family life. From Stanford Children’s IBD and celiac center to medical affairs and public education, Venus brings a rare mix of clinical depth and human warmth—and she doesn’t shy away from hard truths.

We dig into the pressure families feel to “do everything,” the overuse of restrictive therapeutic diets, and the real risks that come with them: malnutrition, ARFID, pediatric feeding disorders, and lasting food trauma. Venus shares a clear way to tell the difference between a transient food reaction and an inflammatory flare, helping patients step off the rollercoaster of fear and over-correction. She also shows how to make care culturally inclusive with simple, powerful questions: What do you like? What do you cook? What feels doable at home? It’s a move from generic handouts to plans that honor heritage foods and real life.

You’ll hear a vivid case study where a patient referred for low FODMAP improved dramatically without elimination—just lactase with dairy, spreading fruit across the day, and changing other patterns developed from past food trauma. We talk about involving mental health early, “asking around the ask” when supplements come up, and borrowing pediatric best practices for adults who shouldn’t have to navigate IBD alone. The theme running through it all: patients deserve permission to dream beyond survival. Biomarkers matter, but so do birthdays, travel, and the comfort foods that make you feel at home.

If this conversation resonates, follow the show, share it with someone who needs a gentler path, and leave a review to help more people find evidence-based, humane IBD care. Your feedback shapes future episodes—what question should we tackle next?

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

SPEAKER_04:

Next week we bring back our friend and friend of the show, registered dietitian Stacy Collins. She's going to be helping us host a new series called IBD Community, where we bring in other dietitians who specialize in inflammatory bowel disease. This week we're taking it off with registered pediatric dietitian Venusa Kalami. You'll hear all about her in Stacy's intro. So let's get it started.

SPEAKER_00:

Hi everybody, welcome to Bowel Moments. This is Robin.

SPEAKER_04:

Hello, everyone. This is Alicia, and we are absolutely delighted to be hosting our second ever IBD Can Eat Me show. This is a series we're going to be doing with our BFF. This is Stacey Collins, Dietician Extraordinaire. So Stacey, welcome to the show.

SPEAKER_03:

Thank you so much. Is it okay if I introduce my friend Venus? Absolutely. You take it away. Okay, so my friend Venus Kalami. I have asked her to kindly prepare a bio so that I don't just wax poetic about how she's my favorite person and we're besties, and I'm just so excited about her as a human being. So Venus is a board-certified pediatric dietitian and nutritionist author, an advocate at heart and in real life for culturally, socioeconomically, and weight-inclusive nutrition. As an experienced clinician, nutrition and science communicator, and James Beard Foundation scholar with training from Tufts, Stanford, and Fair, she empowers children and families to live their fullest lives by building healthy relationships with food and their bodies. Much of her clinical experience took place at Stanford Children's, where she helped found the inaugural nutrition program for their internationally recognized inflammatory battle disease and celiac disease center of excellence. She subspecializes in nutrition for infants and children with digestive and allergic conditions and advocates for food-related quality of life and minimizing diet restrictions. Her passion for food, psychology, and cultural humility has been featured on media outlets such as CBS, KPIX5, Very Well Health, Sesame Street, and others. And she speaks often at professional conferences. Most recently, she's transitioned into the world of medical affairs where she's doubled down on public speaking and educates clinicians on the latest and greatest in pediatric nutrition. Welcome, the news. I'm so excited you're here. Thank you, Stacey, for having me.

SPEAKER_02:

Thank you, Lisa and Robin. But Stacy, you know, you really messed up in my bio because you said you were going to mention my dogs and you didn't. And I'm never gonna forgive you for that.

SPEAKER_03:

Did you hear Jackson in the background? Jackson in the background was like, hell yeah, the noose is here. Okay, shout out to Rostum and to Bonu. Baby Bonu Bear, it's no secret, but baby Bonu bear is my favorite. And I don't mean to pick favorites, but Rostum is a nugget and we love them both. And shout out to the dogs. Amen. Shout out to the dogs. Yeah.

SPEAKER_02:

My reason for existing, you know, no big deal.

SPEAKER_03:

Thank you for being here. Thank you guys for having both of us. This is a real delight.

SPEAKER_00:

We have to start with what are y'all drinking?

SPEAKER_03:

Oh my god, so boring.

SPEAKER_02:

But I'm drinking water. Tears, I'm also drinking water. Okay, amazing. In a perfect world, I would be drinking honestly a hot jasmine tea because that keeps me going and gives me joy, and I never get sick of it.

SPEAKER_04:

I am drinking water, but in the form of tea. So I'm drinking a yogi immunity and stress tea. I'm not sure if it's working yet, but I'll let you know at the end.

SPEAKER_03:

Hope so. What about you? I see a topo chico.

SPEAKER_00:

Sparkling water, lime with mint. It's like I'm obsessed with it right now. So I have regular water, as always, multiple beverages on my little desk here, and Topo Chico Lime with mint.

SPEAKER_01:

As close to mojito as you can get without the mojito baggage, which I really like.

SPEAKER_03:

The mojito baggage.

SPEAKER_01:

We're here for it all.

SPEAKER_03:

Well, we're all well hydrated tonight. So it should be a good conversation. What kind of trouble should we get into? Venus, I'm gonna let you start it off by kind of introducing us to how you eventually made your way into the IBD community. Gladly.

SPEAKER_02:

Well, I started off at Stanford Children's as a pediatric dietitian. Didn't actually realize that I wanted to go into pediatrics until the opportunity presented itself to me, but I knew I always wanted to go into digestive health nutrition, just had a natural interest in it and really loved the mind, body, gut connection and how so much of nutrition for digestive health also has a lot to do with like our mental health and our socioeconomic status. And then when I got into that role, somehow, miraculously, I was placed in the two specialties I really wanted to spend the most time in, which was GI and maternal health. So that was really, really nice. I got to counsel pregnant moms and then counsel on celiac disease and then teach gestational diabetes educations and then counsel kids on tube feedings. And then a few years into that role, Stanford Children's was really fortunate to have received a like it's either 60 million or 80 million dollar grant from an anonymous donor to build this IBD and C React Disease Center of Excellence. And so for that role, because prior to that they they didn't have like a dedicated team, like all the GI dietitians and all the gastroenterologists would generally see IBD. So they wanted to build something really tailored and specific. And when they did that, they needed a dietitian. And at that time, I had just finished my master's in nutrition science and policy. There was a lot of focus on program building and research and whatnot. So it felt like the right opportunity to go in, do clinical work, but also do a lot of program building, get involved with research, and also do like a lot of outreach, like community outreach and education. So IBD came to me. I had family friends very close to me who had really, really, really bad IBD. So I was familiar with it. It wasn't something that was new to me, and I had that personal connection. And for me, I loved GI and loved working in a setting where I could have long-term relationships with my patients and be able to advocate for the child and help calm parents down. And IBD was a great fit for that. And there was a lot of food and mood stuff going on there that I could I could get down with and sometimes run away from.

SPEAKER_03:

Wonderful.

SPEAKER_02:

Depends on the day.

SPEAKER_03:

Yeah, depends on the day. But thank you so much for taking us through that explanation. And it sounds like just kind of the serendipitous conglomerate of right place, right time, passion meets purpose sort of thing. And I think that's really cool, the like the pool that IBD had, because I maintain that I've met my favorite people in life because of IBD, and you are included in that for sure. So we like to kind of end the show, or I say we, as if it's also my show, but Robin and Alicia like to end the show by asking patients and clinicians kind of what's one thing that you could leave with the IBD community. And I don't think it's necessary that we start on that note, but on a similar note, in your time kind of spent on this journey with IBD, with GI, what do you feel like are common pain points both for patients and for clinicians? Because both are listeners here of the Bow Moments podcast. So I'm wondering from your vantage point, Venuse, what do you feel like are some common pain points or even separate, either way? There's so many pain points.

SPEAKER_02:

I think I think we need like a physical therapist to walk us through all the pain points because they're so painful. Just kidding. So, but not kidding. There's a lot going on in the world of GI and IBD, and I think they're both blessing and curses in that, especially in pediatrics, I think a lot of clinicians are really, really excited about nutrition and diet and lifestyle interventions to help children and their families be healthier, potentially control their IBD to some degree. And then parents and caregivers tend to also be very nutrition motivated and want to do, quote, everything I can, end quote, to better help their child. And with that comes an intense amount of pressure to really absolutely exhaust yourself in doing some of these restrictive diets and making sure you've done everything you possibly can for your child. And when you have a child, a lot of times they don't want to go on these restrictive diets, even if the studies say that they help improve cow protectin levels by 25% or whatever it might be. Children need a lot more functional, meaningful, like developmentally appropriate motivators. So that brings me to the pain point of I think we all clinicians, parents, to lesser degree children feel like a pressure that because a lot of these restrictive therapeutic diets exist, that children must go on them or that they need to be pushed on them or motivated to get on them, and that if we're not, we're we're missing something, we're missing this great opportunity. It's a tool. There are so many others. So I think that's one big pain point that I know you know, Stacy, I can go on forever about this. I think another pain point is treating food like medicine in this regimented way of I don't know how to say it, other than like treating food like it's a medical variable rather than this like cultural variable, a moment where people come together and have joy at the table. I've had children literally tell me that when something like exclusive ventral nutrition was offered to them or a restrictive diet was offered to them, they've said things along the lines of, My disease has taken everything away from me, at least don't take my food away from me. Like my food is all I have, and I I couldn't agree with that more. Food is like it's comfort, and some people say, Well, food shouldn't be so emotional. It is stop, it is. And where I live in the Bay Area, it's super multicultural. So I have like a lot of South Asian children or Vietnamese children that I've worked with, or I don't know, Korean families where food is obviously cultural, but for many of these immigrant families, first generation families, it's like the closest connection that you have to your country while living abroad and feeling probably alienated. It means so much more to these families than many of us can even begin to realize. And it's meant to be just in an ideal setting, it's meant to be enjoyable. We don't really need to be talking about milligrams of this, grams of that, portions of this, eat this many refrigerated potatoes per day. Like cooked and cooled, baby, cooked and cooled. Cooked and cooled, because resistant starches and prebiotics and short chain fatty acids. I also think like we've just reduced food down to all these like nutritive components rather than like the the whole is greater than the sum of its parts. Like I think food is very much that. But then when we talk about nutrition, we just break it down to all these nitty-gritty aspects. And when we do that, we toss out like the joy and the fun and the emotional and cultural connections. So again, I can go on with these pain points, but I'll I'll take a pause here.

SPEAKER_03:

I think that that's important because, well, for so many reasons, right? But also just it can be so hard. It can be so hard. So it's interesting to hear you talk about this because our training as dietitians is almost, you know, we go through the nutrition screening, we go through the nutrition assessment. It is kind of set up to make nutrition very algorithmic. It is set up, especially if we think way back to our training where it's like, okay, 15 grams of glucose might cause a blood sugar spike. How are we going to educate around that? And then to kind of take this really nuanced lens, this really tailored sort of lens of looking at the whole patient that's in front of you. And I'm hearing you say that, you know, where you're located, you have very multicultural patients. Can you give us some examples, both for patients and clinicians, of what maybe to look out for so that on either side of the spectrum, they're thinking about what a more culturally inclusive, a more individualized, a more tailored approach to nutrition, what would that actually look like in practice?

SPEAKER_02:

Yeah, I think it's a great question. And I think that's that's the pain point for clinicians of like, I want to practice in a more culturally inclusive way, but I don't know how, or even taking it a step further. I have a lot of clinicians tell me that they feel like it's not their place in that they don't want to ask about culture or they're afraid of saying the wrong thing or saying something that might be a micro or macro aggression. And so then we miss the conversation entirely, and I think it's so much better to ask imperfectly rather than not ask at all. Yes. Yes, ask imperfectly. And I I would like I would extend that message to to so many factors within IBD. I know we're not talking about this quite yet, but talking about like IBD and body image, a lot of clinicians don't ask about that because they're so afraid of saying the wrong thing, and now I'm gonna cause an eating disorder. I think our our patients, our families need our compassion and our sincerity and our vulnerability, sometimes more than the nitty-gritty recommendations that we give them. They just need to be acknowledged as a human. And I think sometimes in the medical world and nutritional world, we really lose the humanity and we we like decenter the human from the whole process. So, anyway, to answer your question about how folks can be more culture inclusive, I think it's it's simple things like I don't know, I can think of a million families who've come to me and they're like, Oh, should I should I be eating more kale? Should I be eating more broccoli? And I'll ask things like, Well, what are the foods that you typically like to eat? Do you typically eat kale and broccoli? Do you like those foods? What do you typically cook at home? And I might have families who are like, Oh, we really like to cook with like fenagreek and our stews and okra. I'm like, those are great, those are fantastic. You can cook with those, they're just as good as kale and broccoli. So I think what you're doing is before you answer the question, you're asking, well, what is it that you do? And what is it that you like? And what would actually work for you? And do you want to eat kale and broccoli? Are these things you actually want to do? And usually somewhere in there, there's a response that they give you that you're like, ah, you're doing something amazing. Affirm that, like, let them feel good about what it is that they're doing. So many of our resources in the world of IBD tend to be very westernized, so they're not super inclusive of wide cultural eating patterns from Middle Eastern, North African to East Asian to wherever in the world you want to stay. And then we have a lot of like generic handouts that encouraged the Mediterranean diet. And I know this is not the first time that the Mediterranean diet has been mentioned on this podcast, but like the generic go-to diet in the world of IBD is the Mediterranean diet. Except the Mediterranean diet is really just a generally healthy diet that has lots of plants in it and isn't super high in saturated fat, and there's really nothing else that's special about it without me getting too deep in the weeds about my my qualms with the Mediterranean diet. And so if we can understand like what makes the Mediterranean diet so quote unquote special, which is just that it's varied and has a lot of fruits and vegetables and olive oil, but you could argue that there are many other oils that are good for you too. I mean, all that's to say is like, are there assumptions that you're making? Can you give some space to your patients to be who they are and share about their cultural practices? And can you encourage them rather than make them feel like they're not good enough?

SPEAKER_03:

I love that so much. And I've certainly lived, you know, on the other side of this as a patient too, but where you just want the answer. And I'm sure you've heard so many patients who are like, can you just tell me the food that will limit my inflammation? Can you just tell me the food that will be okay? Or I'm gonna stick to my, you know, same five foods over and over and over and over. And we we find that these patients are sort of stuck in this, like, you know, most ideal diet scenario, where I don't know, sometimes I wonder if it's allowing them to actually live into a better quality of life. And Venice, you and I have talked about this extensively, where it's like, are we doing our job to make sure that patients are actually living a really profound quality of life? Or are we actually like causing them to sacrifice even more? And what what is that balance between like that rigidity restriction? Like, can you take me through a little bit of like what your brain is sort of going through in an assessment with a patient? Because I think another thing that we get stuck in as clinicians is we're told, you know, which diets would be appropriate for patients. And then when we actually go in and start talking to the patients, we're like, wow, this diet looks nothing like what this patient looks like, right? And so how do we help a patient really live into their individuality with nutrition? Like, what does that process sort of look like in your brain for you or with a conversation with a patient for you?

SPEAKER_02:

Yeah, I think it's a great question. And again, I think in this particular setting in the world of IBD, there's so much pressure to optimize diet from the clinician end, from the parent caregiver end, from the child end, especially when we're working with like adolescents and young adults as well in the world of pediatrics. But I would say, like, if I were to summarize it succinctly and then go into it because that's what I do because I can't resist details. The way I would put it is like the whole point of trying to get IBD under control, whether it's medication, whether it's diet and lifestyle, whatever, is to ultimately help you live your life, right? Like these are all tools to help you find your joy and help you get back to whatever it is that gives you meaning and purpose. And so if you are on a diet that's like literally not only narrowing the foods that you eat, but narrowing the life experiences that you engage in or feel like you can engage in, to me, that's a problem. Like on balance, I don't feel like we're having a net positive impact on IBD, but also quality of life. One particular patient that comes to mind, and I was telling you about this particular patient, Stacy, was this really sweet family that had a young girl who had IBD and they love to do this like there's like a southern ball event that their family would travel to, and there's like a chef there who cooks all these foods and makes a lot of like southern barbecue, a lot of fatty foods, plenty of gluten and all the you know trigger words that people hear in the world of IBD. And this family was asking me, they're like, Yeah, we're we're thinking of just not going because I don't think there's anything that she'll be able to eat, and it's it's that like I we don't want to, you know, trigger her her IBD. And what I asked them was, is this something you guys enjoy? They're like, Well, yeah. I'm like, is it fun? Well, yeah, and like, does she look forward to it? They're like, Yeah, it's one of her favorite things. I'm like, then you go, then you go. And I'm like, there's so many, then you, then you go, like, you know, but like I think I think sometimes IBD2 will put people in this black or white place of like, I can or I can't. And for them, they're like, I can't. I'm like, well, you can go and you can talk to the chef and maybe see if there's some other options that like work better for your family, and it may not be perfect, and we're not chasing perfection.

SPEAKER_00:

I think that sometimes something that needs to be clarified with people, especially when they're newly diagnosed, is there's a difference between having some symptoms when you eat food and being in an active flair, and then like making it worse. Because if you're gonna go to this event and eat some barbecue and have the symptoms for a couple of days, that's a whole lot different than like actually being in an active flare. And like the food that we eat is the inflammation is not caused by the food that we eat. Like if you're in an active disease, that's a completely different thing. So I feel like sometimes people go confused about what that means. So they're like, is this gonna put me into a flare? Well, it's probably gonna give you symptoms for a couple of days, but is is that gonna put you into an actual flare, which I think of as active disease. So could you either both of you, one of you, talk about like the differences there and eating food and making you symptomatic?

SPEAKER_02:

Yeah, one of the things I say frequently to families is that especially when they're in remission and doing fine, but they're like, oh my god, I ate this food and I had loose stool. And one of the things I tell them is like, just because you have IVD doesn't mean you don't get to have a stomach ache because you're nervous about a test. Just because you have IVD doesn't mean that you're not gonna have loose stool after eating three cups of fruit just like everybody else. So all the things that bother everybody else's stomach is also gonna bother your stomach. And you might be a little bit more heightened in your response because of the history that you have, and you might be more aware of it because of what you've gone through. That doesn't make it any less scary, but I want you to know that you're not in harm, like you're not causing harm to yourself. This is not disease, and the way you know the difference usually, and this is not so perfectly black and white, but the way I would tell people, like you know your energy starts going if you're in a flare. Like you notice that normal things start becoming really hard versus you consume too much lactose in a setting, and then like you know, within four hours you're like generally better the next day, you're fine. Whereas like when you're in a flare, it's with you, you feel it, it's in your bones, and it doesn't feel good. Whereas like a food reaction, it's a lot more transient.

SPEAKER_03:

Yeah, I think that's a really important point to highlight, Robin, because so often I talk to patients and they're like, oh, it caused me to flare. And I'm like, oh, did we check your CRP after you ate, you know, a can of beans? It's totally normal to have GI distress after certain foods. That's actually normal. And that's something that we've certainly lost sight of, I think, with just like this optimization purity sort of culture that seems to be very pervasive on social media, is that there is a certain level of smoke alarms that it's important to be like, oh, I noticed that. How can I zoom out? Am I still participating? Am I isolating? Am I experiencing nocturnal bowel movements and night sweats? Because those are always example, like consistently, if you're experiencing, you know, zooming out again more days in a week than not, where you're waking up in the middle of the night with nocturnal urgency and night sweats, like those are all things worth paying attention to versus, okay, well, I mean, I went to a wedding this weekend, for example, had a very large slice of chip chocolate cake. And I'll tell you what, the plane ride home could have been better, could have been a lot worse as well. Could have been a lot worse. But there is a certain level of just like learning that, okay, I live in a body that has experienced trauma in my digestive system. How can I not attach so much investment into that sensation and understand that that is just going to be part of the digestive process versus that's giving my body inflammation? It's making me sick. I did this to myself. That's just kicking yourself wire down. It's not a good time. And the only thing that we know that will, like, over time with food, like really wreak havoc on the microbiome is over-restriction. Malnutrition. Malnutrition. Can you talk about how common that was in your pediatric population or if you saw it at all or never? What what are your thoughts?

SPEAKER_02:

If I saw a lot of over-restriction, I think that's just the knee-jerk reaction in this world of like I ate a food, it made me feel a way, I'm taking it out. That's probably the norm versus the exception across all the kinds of IBD, across all the kinds of life stages, unless they really had a parent or caregiver who was really well grounded and like really knew their stuff. An analogy that I really like to share with families to help them get them out of this like restrictive mindset is one of like the musculoskeletal system and physical therapy. So sometimes a patient will come to me and be like, oh my god, like I ate this kale salad and I had so much diarrhea the next day. I'm like, Well, how much kale salad? And they're like, it was a big bowl. I'm like, yo, everybody gets diarrhea after a kale salad. That's not what I actually say. But I'm also like, but really. And so what I tell them, I was like, well, how often do you like eat that? And they're like, not often. That was like a one-off thing. I'm like, okay, cool. Let's talk about this. You are like someone, like taking a physical therapy, like body example. I'm like, you're someone who goes on walks, right? You're not a marathoner. What you did last night was train like a marathoner with not the body of a marathoner. And what I mean by that is that your gut, just like your body, needs to adapt to things in your diet. And when you don't normally eat those things and you introduce them all of a sudden and a whole bunch at once, it's gonna freak out, just like your muscles and your bones would if you all of a sudden decided to run 26 miles tomorrow. And I feel like that resonates because our digestive system, as you know, it's inside of us. We can't see it, we can sure as hell feel it. But with our physical outside muscles and bones kind of body, we we see it more, we feel it more. There's it's easier to make that connection. So I tell people, just like if you go to physical therapy, it makes sense to introduce these things. I'm not saying don't have these foods, but you might need to do it smaller amounts, or you might need to ease into it, and you can't have maybe too much all at once, and you need to kind of listen to your body and increase as you feel works for you, and that's gonna look different from your cousin who has IBD or your Instagram BFF who has IBD. So for those who have that knee-jerk reaction to restrict because maybe they were on restrictive diets as a part of their IBD management, or because they ate a food and they had this digestive sensation and they they're hyper-vigilant around those sensations. I try to really talk about like, well, think about it in a different way, right? Like if you took everything out, that wouldn't make sense. Just like if you had pain in your body and you stopped moving entirely, that also wouldn't make sense. And what you're doing to your gut is stopping moving entirely, like you would for your body. I may simplify it sometimes for the younger ones, but it's it's the parents usually who need to hear it that it doesn't make sense to take stuff out. But the world at large really loves to tell people like take more out and then you'll find the root cause and you'll cure yourself, quote unquote, of IBD, and then like all will be better. And that's like the furthest thing from the truth, and it's not even going into how much havoc that wreaks on the child and the family units and mental health and their ability to like live their lives.

SPEAKER_03:

Kind of along those lines, just thinking about this hyper restriction that's over-consumed, over-prescribed, it seems like people fail to understand that diet is not a benign intervention. And so, you know, to I'll say many of my white patients, it feels like in some ways, I'll be honest, it feels sometimes as a white person, it feels easier to talk to them about diet and nutrition because a lot of our foods have been like already colonialized. They've already been kind of prescribed around the Mediterranean diet, which failed to, you know, encompass things like places like Tunisia or Morocco. So stay with me, stay with me. So I had a patient one time who was a First Nations indigenous patient, and they described the trauma of not being able to eat their cultural foods because they were made to believe that they were inflammatory foods. I'm talking like rice and corn. They were made to believe that these foods were inflammatory. And they talked about how that was actually more traumatic to them than their entire year of not being believed about a fistula, of being denied biologics. When I finally was able to tell them, like, you can actually have these foods, we're just going to have to consider different textures that are going to be congruent with your, you know, perianal disease. We're just going to have to consider different scenarios in which this may or may not be beneficial for your overall symptom management. They actually described like not being allowed to eat their foods as more psychologically damaging to themselves than their actual disease process. Do you have any examples of venues of something where it's like you think that a patient might benefit from perhaps X diet, or maybe another practitioner is like, hey, can the dietitian go see them to educate them around why diet? But can you kind of like take us through a little bit about what goes through an actual nutrition assessment whenever patients are asking about supplements and they're the, you know, and we're asking them questions as dietitians, like, what is an actual nutrition assessment look like with a dietitian for us to be able to understand how to truly like meet a person where they are? Because that's something we hear all the time. Meet a person where they are, but we're trained in algorithms. So how do we really meet a person where they are?

SPEAKER_02:

I don't even know where to start, but I want to start everywhere. So I want to backtrack and say to you your point that the point that I think you were trying to make is that restriction is not benign. And I think there's a huge misconception that a lot of these dietary therapies are perceived as more natural and therefore lower risk in terms of embarking on as an intervention for IBD. I don't think that could be further from the truth because, again, especially with impressionable young children, we can be sending a lot of wrong messages, we can be invoking significant food-related trauma like your patient. That was not the first time I've heard a story like that. I've I've heard that so many times where patients were like, I would rather be sick than eat in this way. I really rather would. And I was seeing so much of this over prescription of these dietary therapies where clinicians, well intentioned, didn't know how to do the job of the dietitian, right? And were prescribing the diets. It got to the point so much that I literally was having trouble sleeping. It was so bad. Like I felt like it was a mess beyond anything that I could fix. And then I went to NASP again, which is the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. They really need to shorten that though. And I told them, I was like, I need to get up on a podium and I need to talk about this because this can't go on the way it is right now, where people are viewing this these diets as medicinal and no risk. That this is insane because there are so many risks from disordered eating to the emotional trauma to furthering feeding disorders like RFID or PFDs to think about the families.

SPEAKER_03:

Really quickly, I'm sorry to interject. Can you just explain very quickly what RFID and PFD stands for, just for the listeners? For sure.

SPEAKER_02:

So PFD is a pediatric feeding disorder, which can is a big umbrella of many different types of feeding disorders. And there's, you know, debate in the pediatric world of is RFID a PFD or not? I'm not going to get into that. RFID, we see a lot in the world of GI, especially in IBD, and it stands for avoidant restrictive food intake disorder. And we often see it in the world of IBD because we're working with a patient population that has had a lot of shitty experiences with food. And very naturally, this population becomes fearful of food because they've had so many negative reactions. So you take a patient like that and put them on a really restrictive diet, you are literally telling them, keep on having more RFID, like keep keep being fearful, keep doing that. So it got to the point where I got up on a podium and I went through a bunch of literature, a lot of literature in the world of mental health, GI mental health, on why these therapeutic diets, which can be helpful for a small sub-population, is generally not as beneficial as we think. And then myself, a pediatric IBD psychologist, a pediatric gastroenterologist, and a patient advocate sat down together and wrote a paper that we published in the Journal of Pediatric Gastroenterology and Nutrition, which is JPGN, where we talk about like who is a good fit patient and who is not a good fit patient for diet therapy. And I'm telling you, good fit patient is a unicorn. Right? They need all the resources. They need to be have a relatively chill relationship with food in their body. Their disease can't be too extreme because we're we're running the risk of making malnutrition worse. We need to have resources that are culturally appropriate. We need, must have a dietitian and honestly a mental health specialist because this is hard. And when people are telling you things like this diet was more traumatic than my life-threatening disease, you bet I want a mental health specialist in there. So, to your actual question, Stacey, of like what does a nutrition assessment look like? It looks like centering the patient. If you're trying to not take this algorithmic approach, which as human beings, I like to think that none of us are these simple plug-and-chug equations. So if I have a new patient, like what I really like to know is what's on your mind and what is it that you want to talk about? What's important to you? Tell me a little bit about yourself. Like, what school do you go to? What classes are you taking? What's your favorite? What are your favorite activities? What brings you joy? What I really want to know is obviously the patient, but I also want to know what motivates them, like what gives them purpose in life. Because, especially with kids, a lot of kids don't care about health. They don't care about cow protectant levels. I'm a big fan of speaking one's motivational language, which is not like Spanish to Spanish, English to English, but like if I have a boy who loves baseball, right, we're gonna talk about okay, eating, not skipping your meals, and trying to include carrots and broccoli twice a week is actually gonna help your vision be sharper so that when you go up to bat, you are gonna hit that ball, and this is your competitive advantage against the opposing team that speaks their language. So I want to know the things that give them purpose so that when I am then asking about, okay, well, tell me what you eat and who cooks and who shops and what do you like and what do you don't like, I'm thinking about okay, how can I help move the needle forward in a way that gives purpose and meaning to them and keeps them motivated. And it's also a nice way for parents and caregivers to see their child like spark up about something and help them also move away from like the table time struggles of like just eat your vegetables and just one more bite, and moving away from that dynamic that also makes kids not love being at the dinner table with their parents. So when you are caught feeling like, oh, I want to potentially prescribe this therapeutic diet as a clinician, you have to ask yourself, does it make sense? Do they want to do this? What is it giving? What is it taking away? On balance, is this helping or is this hurting? Where is the finish line? Once you get there, what does life after the finish line look like? Because, okay, sure, you get your cow protectins down to a really great level and you scope and it looks really great and there's no inflammation. Okay, but now we're like eating this super restrictive diet that no one is happy eating, then what? So I like clinicians to think about that because sometimes you're just caught in the survival of like patients coming every 20 minutes and you just need to stay on top of your schedule and you're just trying to give an answer to move on and like just survive your day. And I I empathize deeply. And we also have to think about what does the finish line look like? Is there life beyond like this restriction and survival? Like, can we have a little bit of happiness right now and not focus so much on restriction?

SPEAKER_03:

No, I think that's important because something you had mentioned to me in conversations prior is giving patients permission to dream beyond surviving. And like the most important question a dietitian ever asked me as a patient is how did it taste? And to me, that reinforced, like, oh, it's okay that me with a J Pouch, like me with, you know, a 10-year plus history, god like 15-year history with ulcerative colitis. It still means that I deserve to, you know, enjoy those moments when I'm able to actually like taste a meal and enjoy the, you know, the digestive experience that isn't always available. That's something that you actually kind of taught me, Venus, is like giving patients permission to dream beyond surviving. And then also like that balance of sacrifice in a time-bound way. Like maybe, maybe for some people it is really feasible to do some sort of medical diet for a short period of time as a bridge to therapy. For some people, it can offer them a sense of comfort. But what do you do? For example, if you have these guidelines that say that we should be approaching people one way, but then you're looking at a patient and you're like, this just doesn't make sense. Like, because I think that's where a lot of dietitians and even other clinicians get hung up. It's like, well, the guidelines say one thing, but I know that this patient needs another thing. Like we have people right now who don't have access to full kitchens. We have people right now who don't have access to groceries, we have people right now who have a million reasons not to eat at all. What do we do in those scenarios?

SPEAKER_02:

Yeah, I think a lot of times dietitians are put in a position where they get a referral, and the referral is like, teach them this diet rather than like do an assessment and evaluate if a diet therapy would be appropriate at all. And I think with that comes this implicit pressure to maybe move forward with prescribing diets that aren't appropriate for patients, at least in the world of pediatrics. And so one of the things I think that you know dietitians and other clinicians can do is to take a step back and relieve yourself of that pressure and do the assessment and really be objective and subjective, because we're we're talking about humans here, about does this make sense for the patient and not to be afraid to use your voice and respectfully just communicate that style is not a good fit. I had a patient who came to me with inflammatory bowel disease that per his labs and per his last scope was completely controlled, like literally patent scope, perfect. But this guy was still having 15 to 20 bowel movements a day. So they said that he has irrital bowel syndrome diarrhea type and referred him to me for a low FODMAPS diet education. I did a really, really, really deep intake. This took a lot of time, and so I think that can be a big barrier to clinicians. But a good intake, I think, really does take time to get to know your patients and to come come across like the few small interventions you really need to make versus these grand sweeping generalized recommendations that patients tend to get all the time that aren't individualized. So after a lot of questions and asking and all this sort of stuff, I realized that he's likely severely lactose intolerant. I noticed that he's eating large portions of fruit all at once and he's consuming literal gallons of fluid a day, which is like probably triple to quadruple of what his body like actually needed if he were to sit down and do the math. But when I approached him about like, okay, I kind of think you're probably lactose intolerant, like, what do you think about that? He's like, Oh yeah, I know I'm lactose intolerant. And I was like, Okay, tell me more. He's like, I know I'm lactose intolerant, but I really don't want to restrict myself and I want to eat what I want to eat because I used to have active bulimia, and so the idea of restricting myself scares me that I may re-trigger myself to that really low point in my life, and I've made so much progress, and I I don't want to go back to that place, and and I I don't want to be restricted, so I was like, Well, I'm not here to restrict you, so I'm like, could you could you take a lactate with your McFlurry next time? He's like, Yes. I'm like, cool, done.

unknown:

Okay.

SPEAKER_03:

Wait, you you said McFlurry.

SPEAKER_02:

Oh my goodness. Because that's what it was. He was he was getting like flurry, so I'm like, I'm not gonna take this away from you, and also like, yeah, okay, sugar and dairy and whatever, but I'm like, hmm, I don't know, life-threatening eating disorder where you can have like fatal electrolyte shifts and like you know what I mean? I'm like, eat the McFlurria. I will not be the one to send you back to that place, and I hope you never go back to that place. And then the next thing is that he had a lot of like residual behaviors left over from when he was a lot had more active bulimia, so he would eat like large portions of food at once, including really fiber-rich foods like fruit, which are it was it's great. It's great for IPD, antioxidants and fiber and all the things. So I told him, again, I'm not here to restrict you, I just need you to spread that fruit out throughout the day. So if you're gonna have like three cups of fruit, could you do like one cup in the morning, one in the middle of the day, one in the evening, just see how it feels. Just an experiment, right? If you don't like it, we don't have to do this forever. It's we're just feeling it out. He was down with that. And then I was like, okay, but the water, the water we have to cut down. This is crazy. Like, and and the water was because a a lot of folks who have bulimia will drink a lot of water after a meal to make it easier to vomit. And that was like another residual behavior. So I said, I think this is where this comes comes from. He agreed, and we agreed to just cut down his water in half, see how that felt before we cut it down any further. After a couple of visits, when he came back, his stooling went from 15 to 20 urgent bowel movements a day to three to four non-urgent, formed, comfortable bowel movements. And we did not do any such low FODMAP diets. I didn't take anything out of his diet except if you count water, a little bit of water. Took some water up, okay. And I so I I use that case often because it took a lot of questioning to get to that point, and the knee-jerk reaction from a lot of GI clinicians would have been a low FODMAP's diet, and that's what he was referred to me for. And I was like, this is objectively wrong, the wrong thing to do. I had no doubt in my heart, mind, body, and soul that like we're not doing this. And so then after we had the success story, I emailed his gastroenterologist, who happened to be the head director of my program, is a very reputable person, and I was like, So here's the story. And then we had this really great discussion in clinic, and I told him my like unadulterated thoughts about a low FODMAPS diet that in most cases it's actually really harmful, and in a way, it's kind of a lazy intervention to give anyone who has some sort of GI sensation a low FODMAPS diet, is also insane. So who knows what your question was, Stacy? I went on my tangent, but here I am.

SPEAKER_03:

No, it's great, and it's simply it's simply not appropriate for people with a history of eating disorder. So there's that, but well done, well done.

SPEAKER_00:

As somebody who has lived with this disease for more than half my life now and being diagnosed as an adult is I find sometimes too, is that especially the last time I was in active disease for a long time, for several years, my body is it's like a habit. It's used to go into the bathroom three, four, five times a night. And so my body's like, well, we have to go to the bathroom even if we don't. So sometimes it's even that when I have pain and discomfort in certain areas, I'm in remission. So it's like, okay, all right, fine. Let's have a little conversation here. Is this actually pain and discomfort, or is there something happening and you're like, oh, it must be pain because that's what I'm used to? Especially for adult patients who've lived with lived with it for a long time. I feel like that is just we're so used to like feeling every feeling, feeling every morsel of food go through our body, feeling all of these things, and our body is so used to t trying to take care of us the best that it can.

SPEAKER_02:

Yeah, I totally agree. Our bodies are imperfect, and that's what makes them so good. You know, they they are imperfect, and sometimes our body needs to take care of the mind. The mind needs to take care of the body with IBD, without IBD. Like we are flawed human beings, and we just sometimes need someone to bounce our experiences off of to be validated and to like know that like this is normal and this is okay, and that you don't need a crazy restrictive diet to make it better.

SPEAKER_03:

I think that sometimes I come across as a little too like I'm just like so aggressive on like IBD patients deserve to experience like a good digestive experience. And I'll just say, like, heard one of the GI doctors in our clinic recently explain to a newly diagnosed patient, like, IBD sucks enough. Like, we shouldn't also make your diet suck. But it was just such a refreshing like reframe from in 2012 when I was diagnosed, the doctor was like, diet doesn't matter. And to me, that meant like my pleasure doesn't matter, my curiosity doesn't matter, my fear doesn't matter because the way that I was afraid of, the way that food hurt in digestion, my God, like water hurt to digest. And the way to just wasp that away as if, like, oh, it doesn't matter. I mean all of this to say, like, to me, in that moment, just hearing that doctor say that to that patient, like IBD sucks enough. We don't need food to also suck for you. You need your diet to be as varied, as possible, in as safe of a way as possible. Like here, talk to Stacey. I just hope that people are hearing the nuance of like the work that we do is like holding space, understanding a person. Where are you? Where do you come from? Tell me everything you've ever wanted to know about food. And also something that I learned from you, Venus, is like asking around a person's curiosity. So, for example, if they want a certain supplement, actually, can you really quickly like go into that spiel? Because you you are very much more eloquent about that. I just really think that's important really quickly.

SPEAKER_02:

I'm something that I'm a big fan of is teaching other clinicians to ask around the ask, which means that if a patient's coming to you and they're like, oh, what do you think about this protein supplement? Or, or like, what do you think about green juicing and celery juice and whatever? A great way to just acknowledge that they're motivated is to be like, oh, that's really interesting. I'm happy to answer that question for you, but tell me a little bit more about what motivated you to pursue this. Like, what is it that you want to know about it? What drew you to this? And I think that helps us as clinicians be able to give more thoughtful and individualized responses versus being like, yeah, the protein's fine. Ah, creatine, I don't know, ask your dietitian. Green juice, if you like it, drink it. More of what it does is like it just gives us more insight into where they're coming from, what's important to them. And it also gives us an opportunity to redirect to maybe something that's gonna be more beneficial to what it is they need. So if let's say it's green juice, and I'm like, it sounds like you're super motivated to take control of your health, do something good for your body, nourish your body. And I love that you're asking about this. I'm wondering if we could talk more about like incorporating vegetables in a way that feels good for your gut because that's gonna give you actually even more benefits than the celery juice that you're asking me about. We could do the celery juice too. That's fine. But I'm just thinking about like what you're motivated about and like what it is that you're trying to achieve. And I want to help you get there. So I think asking around the ask gives us just a glimpse into the worldview that our patients have and what's important to them.

SPEAKER_03:

I love that so much. Robin, what do you think that we could take from Venusa's pediatric lens and bring into adulthood or adult GI?

SPEAKER_00:

I think lots of things from the pediatric lens need to be brought into adult GI just because they're so focused on the care of the whole patient more so in the pediatric world than they are in the adult world. Not every big clinic has resources like dietitians and and mental health support. So I just love that whole treating the whole patient and uh taking care of them, which they do very well in the pediatric space. If I can be Robin for a moment, welcome.

SPEAKER_04:

I also feel like perhaps in the pediatric setting, they're much more defaulted to including the family in discussions and talking about what's important to the family. And I think that's not something like once you get to be an adult, they're like, it's just you and you gotta manage yourself. It's it feels like we sort of lose that community around us. And so I do feel like that's something that pediatric clinicians and dietitians in particular are talking about like what's important to your family, how do you celebrate things? Like, you know, how can we help you kind of keep the flavor of your family as we're trying to help you navigate these waters?

SPEAKER_00:

So Felicia, that is so good because even as an adult, you are not on your own. Like I have a caregiver. When I was in the hospital, when I had surgery, when I'm in a flare, my husband's there, my daughters are there. Like it's not just me taking care of myself. Like that's such a good point.

SPEAKER_03:

I think that wraparound like comprehensive meeting people where they are. I think everything I know from nutrition is because you know, a pediatric dietitian is like you, the news has taken time on a podcast.

SPEAKER_02:

I think that's what makes pediatrics special. And I think I hadn't again I had no intention of going into pediatrics, but once I saw like the respect for the family unit and like the emphasis on it takes a village, truly, I stayed because I hated how isolated the adult world felt. And it's very, very hard. And I commend those who work in the adult space, but I need some warm and fuzzies at the end of my clinic day, and I felt like I could get that in pediatrics, and it was still hard. And you're still seeing children go through the worst days of their life and entrusting you with something that I've felt very privileged to have been entrusted with. Still not easy, but at least like you visibly see the community and you can include them. Whereas I think adult care is just a lot more individualistic and it may lend itself to making IBD feel like that much more of an isolated experience. I feel like that's a misrepresentation because it really does take a village to take care of someone, love on someone well, feed them well, and you know, no one is taken care of alone, whether you're not the adult or a child. It's just that in pediatrics we acknowledge that in adult world we we pretend we're all tough cookies. Deep down we're just soft marshmallows, you know.

SPEAKER_03:

Yeah, we're just tall kids. You said that, right? We're just tall kids.

SPEAKER_02:

Yeah, adults are big kids, but kids are not small adults, is what I say.

SPEAKER_00:

That's right. Um, I feel like this is gonna be a fun series, Alicia. That IBD Can Eat Me series with Stacey. Thank you both so much for being on the show. I'm gonna give each one of you an opportunity to answer this question. What is the one thing that you want the IBD community to know?

SPEAKER_02:

You are allowed to dream above and beyond just surviving your condition. You are allowed to dream beyond ideal cal protectin levels and perfect scopes. Like you can dream about that trip you want to take and the college that you want to go to and the profession that you want to pursue. Don't limit yourself, don't let your condition limit yourself. Your journey to whatever it is that you want to do is gonna look different because of IBD, but you can still have the journey. It's not gonna look the same, but don't not have the journey at all. And gosh darn it, like please, please think about it, please dream. Wonderful.

SPEAKER_03:

Yeah. I also think that it's important, I'll just piggyback off of that, to advocate for not only for yourself, but when you do advocate for yourself, know that you're also advocating for others. So if you do happen to have a dietitian, it's okay to tell them, like, hey, this handout is not my life. This is this is not gonna work for me. Challenge your clinicians to be really strong accomplices on your behalf so that you can have, you know, recruit the resources to dream beyond your fecal cow protective levels.

SPEAKER_00:

Sometimes it can be scary to advocate for yourself, but you have to do it scared for the reason that Stacey said, like advocating for yourself helps other patients, even if you love your doctor, even if you especially if you love your doctor. But when you love your doctor, it can feel scarier because like, or if you've been living with the disease for a long time and you're like, I don't want to talk about this anymore, like you have to do it. Sometimes it's hard, even if you're like me and you're outspoken, and most people would think like it's she's not scared of talking to her doctor, she's not scared of advocating for herself and others, she's not scared of that. I 100% am when I'm in the moment with my doctor because sometimes I don't want to be the lab patient. I don't want to be the squeaky wheel, I don't want to be the one who's the problem, or I don't want to be that person, but it does help all the patients coming behind you.

SPEAKER_04:

Stacey, Venice, it was so lovely to get a chance to eavesdrop on your conversation. So thank you guys so much for coming and joining us and doing the second inner IVD Can Eat Me series. So we're excited to have Stacey back to have even more wisdom dropped upon everybody. So thank you guys so much. Thank you, everyone else, for listening. And cheers. If you like this episode, please rate, review, subscribe, and even better, share it with your friends. Cheers.

Head Shot

Alicia Barron

Host
Head Shot

Robin Kingham

Host

Podcasts we love

Check out these other fine podcasts recommended by us, not an algorithm.

About IBD Artwork

About IBD

Amber J Tresca