#047: Breaking the Silence Around Lymphedema and Lipedema: Expert Advice from Jean LaMantia, RD and Cancer Nutrition Specialist
KEY INFORMATION ON TWO UNDERDIAGNOSED CONDITIONS IN WOMEN
In this week's episode:
BREAKING THE SILENCE AROUND LYMPHEDEMA AND LIPEDEMA: EXPERT ADVICE FROM JEAN LAMANTIA, RD AND CANCER NUTRITION SPECIALIST
Lymphedema and lipedema are two conditions that often go misdiagnosed or overlooked, despite their potential to significantly impact a person's long-term health, especially women.
Our goal today is to break the silence and shed light on the physical and emotional challenges that women face when dealing with these conditions and to promote understanding within the broader community. These are so commonly missed, leading to delayed treatment and unnecessary anguish and unsuccessful chronic dieting in women.
One of the main reasons why these conditions often go misdiagnosed or overlooked is the lack of knowledge and specialization within the medical community. Medical training typically provides only a few minutes of education on the lymphatic system, leaving healthcare professionals ill-equipped to recognize and properly diagnose these conditions. And even today, there is a lack of research.
Join us for this special conversation with Jean LaMantia, R.D., a cancer nutrition specialist, and an expert in nutritional support for the conditions of lymphedema and lipedema. One of her superpowers is digging into the research that does exist and making connections. Jean is a Registered Dietitian in Canada and the United States with more than 20 years’ experience helping people to achieve their nutrition goals and use food to fight cancer and cancer recurrence. She has researched and authored or co-authored three books on nutrition for cancer, lymphedema and intermittent fasting: the links for them are in the Show Notes for this episode here.
Although they sound the same, they are very different, and women can up having both at the same time. In this episode, we will explore those differences, the challenges of misdiagnosis, the importance of advocating for proper treatment, the role of the lymphatic system, the benefits of an anti-inflammatory diet, and insights on intermittent fasting and its positive impact on lymphedema and lipedema.
This topic is one where women need to advocate for themselves! If you struggle to speak up or if you're discouraged on your journey to find support, listen to Episode #043.
- The lymphatic system plays a crucial role in moving fluid throughout the body, and its dysfunction can lead to conditions like lipedema.
- Lymphedema and lipedema are often underrecognized or misdiagnosed, causing significant physical and emotional distress for patients.
- The lack of specialized training and awareness among healthcare professionals contributes to the underdiagnosis and undertreatment of these conditions.
- Seeking a diagnosis from a certified lymphedema therapist is a crucial first step in managing lymphedema and lipedema.
- An anti-inflammatory diet can be beneficial for both lymphedema and lipedema, as inflammation is a common factor in these conditions. However, the interpretation of what the true anti-inflammatory diet is changes everything.
- Intermittent fasting, when done correctly, can support lymphatic health and help manage symptoms of lymphedema and lipedema.
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- The Essential Cancer Treatment Nutrition Guide and Cookbook
- The Complete Lymphedema Management and Nutrition Guide
- Complete Intermittent Fasting: Practical Guidelines and Healthy Recipes to Lose Weight and Improve Wellness
Contact Jean: [email protected]
Jean's Website: https://jeanlamantia.com/
For those asking, there are the Compression Massagers we used for our Dad to manage his lymphedema. These have more compartments and more programming options than other competitors or cheaper versions. They were a game changer on his road to recovery:
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Heather Young, C-IAYT, E-RYT 500, CPT, CES: Welcome to the podcast, Jean. We are so excited to have you here today.
Jean LaMantia, RD : Oh, thank you.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: I'm excited to meet the two of you as well. Yes, it's amazing what the internet can do in connecting people from all corners of the world. Yeah, making the world a little smaller. It is, in a very good way. The place we always love to start is with people's story. How did you get to where you are today, where you're on a mission to help educate people about nutrition and the intersection between nutrition and cancer, and then also the really important conditions of lymphedema and lipedema?
Jean LaMantia, RD : You know, I was very interested in nutrition back in high school. And I think a lot of dietitians, you know, got into this profession, you know, out of their own personal interests. And I definitely was one of those. So I just knew right out of high school, I'm going to study nutrition. And thankfully, I got into the university of my choice and got to do that and got my clinical internship because it was clinical or bust for me. I was not doing any admin or public health nutrition, like nothing wrong with those, it's just that's where my interests lie. I really wanted to focus on that and I love the troubleshooting aspect of it. So I graduated from my clinical dietetic internship, and then I had had a couple of jobs, like two seven-month contracts, one inpatient, which I loved, in neurology, calculating tube feedings. Boy, if I can get the calculator out as a dietitian, I am in love. So I'm in Canada. I did my education here, but a few years ago I wrote the American exam, the CDR exam, and I realized in going through all the practice questions, whenever one where I had to calculate TPN or entro, it's like, oh, goodie, you know, it's like, that's definitely my vibe. It's not where I ended up working, however. But what happened was a real turning point. When I turned 27, I was actually diagnosed with cancer. I had Hodgkin's lymphoma. So I had, um, lymph nodes in my neck, under each arm, and then in the middle of my chest were affected. And the one in the middle of my chest was 15 centimeters. It was actually like pushing out of my body. It reminded me of that movie Alien, you know, where the creature comes out of you. So after that, I really developed an interest in cancer nutrition because there's just so much anxiety that goes with, especially, you know, at any age, but at a young age, You know, I thought that every little headache I had after that was a recurrence. So I really had to have a little talking to myself one day and say, Jean, like, you've got to get a grip on this. Because I realized that my anxiety was running the show and my hypervigilance was running the show. So I do what I love and I, you know, hit the research. I just spend a lot of time over on PubMed reading about nutrition and And it really seemed like the cancer nutrition kind of fit into one of three pillars, which was you either eat to support your immune system, you eat to reduce chronic inflammation, or you eat the nutrients that, at least in laboratory work, we know can actually damage the cancer cell directly. And I started applying that. I started working with that. I worked with a cancer support agency and I wrote a book. It's called The Essential Cancer Treatment Nutrition Guide and Cookbook. And so I was really, really invested in the cancer. One day I got a call from a physical therapist who works at a lymphedema clinic. She really wanted to work with a dietician who understood cancer because a lot of her lymphedema patients came to lymphedema through cancer. And I started working there and I realized there are no resources for dieticians either in Canada or the US to help them work with lymphedema. So again, I went back to what I know, I went back to the research, I started researching, and I started applying what I was reading and it was helping people. And I just kept going. Called up my publisher and I said, I think there's a need here for a really good book, evidence-informed book, on lymphedema nutrition and self-care. And so I got to write it with that same physical therapist who initially hired me in her clinic. And that's called the Complete Lymphedema Management and Nutrition Guide. Yeah, and so since then I've been speaking about lymphedema, presenting at national conferences, presenting to groups of oncology dieticians and, you know, any other groups where I think it's relevant. So in the bariatric community as well. And then from there, got interested in lipedema because many women would say, well, I have lymphedema and lipedema. And so again, I got interested in that research. So that's the answer to how I got into this. It's through my own cancer. and then through that clinic.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: That's quite the journey and it's unique and it's impactful that you have done work with a physical therapist because that's what we see in our practice is you have to work on the nutrition side and then with the physical therapy and the physical body side. And so it creates a much more in-depth approach to how are you going to tackle these conditions and create change and help people feel better. So first of all, I love that and hearing that from you, but then also right away I was curious because with your cancer and especially with having such a large growth in your chest, did you struggle then with your own form of lymphedema or did that not be one of the things that happened to you with the cancer?
Jean LaMantia, RD : Yeah, so I did not end up with lymphedema, but what happened to me with my treatment, because my lymphatic system was affected by the cancer, and for your listeners who may not know, one of the main jobs of the lymphatic system is to move fluid in your body. So if you think of your heart, when your heart pumps out blood from the aorta, then that aorta channels out into smaller arteries and then those arteries go down into arterioles and then from the arterioles the blood passes through capillary beds and then into venules and veins and then back to the heart. But as the blood is passing through the capillary beds some of that blood fluid leaks out. So it's like the blood plasma, it leaks out. And it's the job of the lymphatic system to pick up that blood and return it back to the heart. So it has to bring from the tips of your toes all the way up to this area behind your clavicle bones, where the subclavian veins are. and from the tips of your fingers in and from your head down. So all of your lymphatic fluid comes to that area around the neck. Because I had this big tumor in the middle of my chest, you know, the fluid that was on its way to, you know, up the subclavian veins, it wasn't going where it was supposed to, and it was being emptied into the lungs. And so what was happening, I was becoming increasingly more short of breath. And, you know, for someone who was like, I was 27, I was fit, I was working out every day, I couldn't climb a flight of stairs without having to rest. I could only say two or three words at a time without having to take a breath. And essentially what was happening was I was drowning in my own body. Yeah. Because my lungs were filling up with lymphatic fluid. So it left a lasting impression that, you know, the lymphatic system is really critical. It's one of several systems in the body, but boy, it gets ignored, but at its peril because it really is important. So that was my issue with my lymphatic system.
Jennifer Klotz, MS, RDN, LDN: I could not agree more that there is not a lot of information about this and especially for dieticians. So I have read both of your books. They're amazing. And I devoured everything that I could find on this because not only was I getting more and more patients with cancer and supporting them through that, but then our dad Went through his own cancer journey over the last year and a half and one of the major side effects for him was getting lymphedema and Luckily, you know because of our experience with others we knew what was happening and so we could advocate Really hard for him of getting it Supported and adequately treated and doing all the things that we could to make sure that it didn't keep progressing So what we see on our side is often conditions go undiagnosed or unmanaged, especially the lymphedema. I feel like lipedema is relatively unknown for most people. So from your perspective, can you just shed a little bit of light on why these conditions often go misdiagnosed or overlooked, despite them being something that can significantly impact someone's long-term health?
Jean LaMantia, RD : Absolutely. And I just want to say, you know, shout out to the two of you because advocating for your father as he's going through treatment, that is so powerful. And you know, a lot of, I'm not sure how old your father was, but you know, that generation, they don't want to complain to the doctors, right? You know, they think anytime you ask a question or something, it's complaining. And my dad, you know, just, just be quiet, right? I need to ask this question. I need to know. I just want to highlight that. What an amazing gift that was to your father to have the two of you doing all that background research and advocacy. I hope that's the case for a lot of people out there going through cancer treatment. But to answer your question, why are they often misdiagnosed and overlooked? In the case of Like, honestly, I think in both cases, there's only so much you can learn in medical school, right? And, you know, as it is already, it takes years to become a doctor. It takes years then on top of that to become a specialist. And there's no lymphedema specialization. Like the closest thing is a vascular surgeon, right? So often if someone's having, you know, struggling with their lymphedema, we send them to you know, a vascular doctor, but there's no, you know, lymphedema specialty, like it's a whole body system and there's no one that specializes in it. And from what I've heard, medical training is only a few minutes on the lymphatic system, and dieticians, you know, I can tell you, and Jennifer, maybe you can comment as well, but I remember learning about the lymphatic system when we learned about, you know, digestion absorption, we learned that long-chain fatty acids are absorbed through the lymphatics, but outside of that, I don't remember really learning much about it at all. Agreed. And then in terms of lipedema, this is just a tragedy because, you know, there is research on this, on how women's concerns are often overlooked. Women are often labeled as being, you know, kind of hypochondriac, they're undertreated. And on top of that, people who appear to have a larger body, so people who would meet the classification as obesity, again, everything gets blamed on the obesity. And I think it just somehow, I don't know what it is about the training in healthcare, if this is just, what do you call that, unconscious bias. But that exists a lot. And these women are stigmatized. They're just told, you know, they're obese and they need to lose weight or exercise more. They need to stop eating. And people don't believe them when they say, but, you know, I eat the same thing as, you know, everyone else in my family. Or I eat better than they do and I'm still gaining weight. But, you know, people just, I think the health care system just, when they don't have an answer, the easy answer is it's your fault. Right? And a little bit of laziness because You know, and I get it. If you're a doctor, you've got 10 minutes per patient. Like, do you have the hours it takes to, you know, get on to PubMed and start researching or figuring things out? You probably don't. So, yeah, it just, unfortunately, from the people that I've met with lipedema and also some cases of lymphedema, they go years without a diagnosis. It's heartbreaking.
Jennifer Klotz, MS, RDN, LDN: Yeah, I could not agree more. I currently have a client that I recently just started working with and her lipedema went undiagnosed for 35 years. Yeah. Yeah. And there's a lot of pain there, right? There's physical pain, but the mental anguish of understanding that, you know, they were taking care of themselves and they were presenting this issue to doctors like this particular client She saw about, I think she said 13 different doctors and she went to different specialists because she could see that there was something going on, right? It didn't make sense to her and it was all dismissed, right? Despite now, right? You can look back. she had all of the presenting symptoms the first time she presented it to the first doctor. And so there's a lot of anger there. There's a lot of frustration, suffering. And so what do you usually do to start tackling even just the emotional side of it, of recognizing, oh my goodness, you know, yes, you should have gotten help sooner, but this is what we can do to help you now.
Jean LaMantia, RD : I think one of the things I do is I just listen. I let them tell me their story and I support them, I sympathize with them. And then we get to the point where it's like, okay, what are your goals? What do you want to do? And then we move forward. But I think it's important to hear them because You know, I actually, I have a word for this. I don't know if this is universal or just something I've made up, but I just call it medical trauma. that a lot of the women that I see who have lipedema, and can you imagine like it presents at puberty. Yes. That's such a vulnerable time for young girls. And you know their bodies are forming differently than their friends and they look different even though they eat the same and you know all of that trauma and then to go to the doctor for help and be told it's you, you're lazy, you're fat, you're useless. Oh my gosh, like the trauma in there is it's unforgivable but you know we try and move forward with just lots of support and you know a lot of times might seem funny to like to get a medical diagnosis you think you'd be upset or sad or angry but a lot of them are just so relieved to finally have an answer and explain what's been going on with them so yeah and I just let them know there is help and there are things that we can do to help manage the lipedema.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Yeah, that's beautiful and I'm glad so many people have access to someone like you who can listen and then help them learn and advocate for themselves. And the reason we were so excited to have this conversation today is because we do see it, but it's not very well researched. There's not a lot of understanding about it. And unfortunately, it just plays right into this cultural silence. Jennifer and I were talking in the season about noise versus silence, the things we hear all the time, the noisy messages versus the quiet ones we miss that also affect our life as well. And it fits into the noise of if you are heavier, if your legs are heavier, if you appear physically as if you have a problem with that or the composition of your body, then clearly it's on you. You have to try harder. And that's the noisy side versus the silent side that there are 10%, 10 to 11% of women who it has nothing to do with their effort and it has nothing to do with their motivation or self-control. It's a physical condition that needs to be managed. So Getting the word out there helps people start to be able to advocate for themselves and to start to ask questions and go to the next doctor and then hopefully find people who can help them. So what would you say is the starting point for someone who's listening right now who is like, wait, I've struggled with my weight my whole life. I feel like I try. I'm feeling pain in my legs. It hurts to touch what other people call cellulite on my body. It just doesn't feel right. Where's the starting point for someone like that?
Jean LaMantia, RD : Yeah, I think it's important to get a diagnosis. Now that's challenging because just like there aren't lymphedema, there's not a lymphedema specialty, there are a few doctors that specialize in fat disorders because this is essentially what this is and it's one of several, you know, a handful of rare adipose tissue disorders. So if you're fortunate enough to be in a location where you can find one of those doctors, that would be a good start. If you're like most of the country and, you know, a fat disorder specialist is not close to you, I think the best place to start is to find a certified lymphedema therapist. And I know I'm saying lymphedema for people who have lipedema, but that's because even though they're two different conditions, so lymphedema is an accumulation of lymphatic fluid in the body, which can be primary, so essentially something that you're born with, where your lymphatics don't function properly, or secondary, so related to injury or trauma to your lymph nodes or your lymphatic vessels. So a common example there would be someone who's had lymph nodes removed as part of cancer treatment and then they develop lymphedema as opposed to lipedema, which is a fat disorder. It's the accumulation of painful fibrotic fatty tissue. It's often referred to as well as a connective tissue disorder. And so this fat can grow, it grows certainly disproportionately within the body, right? It tends to affect the hips, the thighs, the legs, sometimes the arms. Now, not always, but it can spare the torso. But the treatment for lymphedema and lipedema, like the conventional treatment is the same. it's going to a certified lymphoedema therapist. So not, you know, not someone who does lymphatic drainage for cosmetic, using a certified lymphoedema therapist who has training in this. And this could be a physical therapist, an occupational therapist, a nurse, a massage therapist, right? Any of those, or kinesiologists, any of those professions can then do the advanced training. And they will take you through, there's a series of four different main treatments and those are manual lymphatic drainage, which is a very gentle, let's call it massage, but it's like a skin stretching technique that helps move the lymphatic fluid. because especially in advanced lipidema like stage three and above, you tend to have fluid that accumulates as well. Then there's compression and there are different stages of compression. So there's the decongestive phase in which you would go through something called multi-layer compression bandaging. And then once your fluid accumulation is stabilized, then you would wear a compression garment. So these are medical devices, they might look like just leggings or stockings, but they have 10 to 20 millimeters mercury of compression or 20 to 30 millimeters mercury, like that would be prescribed by your lymphedema therapist. That can provide a lot of pain relief for someone with lymphedema. then there's proper skin care, and then there's exercise. So that's what's known as the conventional treatment. If you even suspect you have lipedema and there's not a rare adipose tissue disorder specialist in your area, I would go to a certified lymphedema therapist. Now, they can't diagnose you, but they could certainly give you a hint like, yeah, I think this is lipedema or no, I think this is something else. Here are the specialists in the area because they're going to have a better idea of who to refer you to, and it might be a vascular surgeon or, you know, a rehab physician or someone who they have probably received referrals from that they know understand these conditions.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: That's a great starting point, and it is important, too. Obviously, we're really good. The medical community, I think, kind of sometimes likes to gaslight people and be like, you can't self-diagnose and you probably don't have this thing, which is true. It doesn't do you any favors to self-diagnose. But once you start to understand, you check these boxes and you have a lot of the things that make this condition seem like it's real for you, you can start pursuing getting a diagnosis and looking into advocating for yourself. And what I find interesting, especially with this, is getting the treatment for this is going to be in general good for the human body. As an RD, I know Jennifer's been waiting to ask this question and I'm jumping the gun and asking it for her. It's like, how do you approach the nutrition side of treatment and specifically approach the positive research that is around intermittent fasting?
Jean LaMantia, RD : I actually, in between my cancer book and my lymphedema book, I wrote a book on intermittent fasting. So it's called Complete Intermittent Fasting. I easily have read over a hundred research papers on intermittent fasting. So I feel very confident that it is safe And initially when I was researching my lymphedema book, I just came across one particular paper and talked about more than 50% of the lymph fluid in the body is formed in the GI tract. And it really, my brain went back to my clinical internship on the GI unit. And when we would admit someone with Crohn's disease or colitis and their gut would just be inflamed and they're just in a lot of pain and they just can't tolerate anything. And one of the treatments we would use at that time was called complete bowel rest. So we just would not feed them anything and they would get CPN. And so their bowel could just rest and recover and the inflammation could go down. That's where my mind went when I read this, and I'm like, well, if all this lymph fluid keeps getting produced after every time you eat with your lymphedema, obviously we're not gonna put someone on complete bowel rest, but what if we just gave the bowel a chance to process all of this? And so I've not come across any studies on, intermittent fasting for the lymphedema population specifically. But it just made so much sense, and it also, like I could see all the intermittent fasting research, that it was a safe strategy. Yeah, there are some mild side effects, but nothing long term. And I started using it with my clients, and they really did notice a difference. It's one of their favorite things to do, actually. is cut out that nighttime eating, stop snacking after dinner, and then when they wake up in the morning, that lymphedema is so much happier. And it just makes sense. So what I tend to use is, as you probably know, there's two main types of intermittent fasting. There's the weekly fasting, which is something like 5-2, where you might fast two days a week and eat five. And then there's time-restricted eating. So when you divide your 24-hour day into windows of eating and fasting. And so we tend to do the time-restricted eating. And my first step is always, let's get you to 12 and 12. So a 12-hour eating window, a 12-hour fasting window, that's step number one. And then they advance, they keep inching back those windows so that maybe they can get to a 13-hour fast or a 14-hour fast, and they really do find it helps their lymphedema.
Jennifer Klotz, MS, RDN, LDN: And that makes total sense to me as far as within this conversation, I think sometimes people like to use a new dietary suggestion and make it apply to the entire general population for everyone. However, based on what I have learned about this and reading everything that you've written and even this conversation right now, I would say that using intermittent fasting the way that you just described, which is you're not having someone skip breakfast. You're not having them fast into the day when you need energy. You're having them stop eating, you know, in the evening, you know, shut things down and you're having them achieve the recommended break for anyone within the population, which is 12 hours. And then seeing if from there, extending it to 13 to 14, does it make you feel better? Do you notice differences? And it sounds like with everyone that you are working with, you are noticing a positive effect with doing that and pushing the window a little bit farther back.
Jean LaMantia, RD : Yeah, that's right.
Jennifer Klotz, MS, RDN, LDN: So I absolutely, I really like that. And in general, I think even if you don't think you have lymphedema or lipedema, the confusing language around intermittent fasting, I would say that you do want to work on allowing your digestion to rest and give yourself that 12-hour window. But you don't want to be skipping morning eating. You want to be figuring out how to stop eating in the evening. And with that being said, that's a dietary rhythm change that you do with your clients. Are there certain foods that you have them bring in or even certain nutrients that you focus on that can be really helpful and supportive for either of these conditions as well?
Jean LaMantia, RD : Well, one thing across both of them is anti-inflammatory eating. Because ultimately, if you look at what's going on at a cellular level, there's inflammation. So when someone has lymphedema, they have an accumulation of lymphatic fluid. Now, that's different from cardiac edema or renal edema or liver ascites. And the difference is that the lymphatic fluid is a protein-rich fluid. And that protein sends out, basically attracts macrophages, which are your big eater cells, part of your inflammatory response. And then that triggers an inflammatory response in that limb. So that arm with lymphedema or the leg or the breast or the, you know, wherever the lymphedema is. And what's happening under the skin is the inflammatory response is to start building fibrotic fatty tissue and thickening the skin. And so that's going on underneath the skin and that's the progressive part of lymphedema. So lymphedema is chronic and progressive. Chronic meaning like there's not like one single cure that you can do, right? And progressive meaning it gets worse over time. And what contributes to it getting worse is the buildup of this fibrotic scaffold and the thickening of the skin. And eventually some people who have lymphedema that progresses, instead of having fluid under the skin, the fluid goes and it gets replaced by hard fibrotic tissue. And then you get problems with the skin where the skin starts developing. It could be warty overgrowth or papilloma or, you know, the skin gets really dried out and, you know, it can lead to lots of problems. So, and that's a legitimate fear. I think that a lot of people that come and take my program, so I have a group program called Lymphedema Nutrition School, and they'll often say they're afraid of their lymphedema getting worse, or they're afraid of losing their mobility. And so I, although there's no There's no diet research on this. We know from, I mean, there's no diet research specifically on lymphedema and people following an anti-inflammatory diet, showing that it slows the progression. We don't have that, but we have other pieces of that puzzle, which is, you know, if you look at the Dietary Inflammatory Index research, it goes back to 2009. We know that certain foods can, you know, predict blood levels of inflammation. And people who have high blood levels of inflammation, if they change their diet, we know that we can bring it down with diet. So that's all been validated. We know that that can happen. And then we know from other health conditions like cancer and heart disease and diabetes, that an anti-inflammatory diet is protective. So I feel fairly confident in recommending anti-inflammatory diet for both conditions. With lipedema, There seems to be a little more controversy. I was speaking at a conference. last year, and the lipidema specialists were saying, we don't know if lipidema is inflammatory, which kind of surprised me, because I thought it was kind of self-evident. But anyway, regardless, I think an anti-inflammatory diet is going to be beneficial there. And I know, you know, I can think of clients, one young client who's sort of the textbook picture of someone who was misdiagnosed and stigmatized as a young girl, and finally diagnosed as an adult. Two things that really helped her with her pain was one, getting into compression garments, and two, getting on the anti-inflammatory diet. So I think it's good for both.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Even though there is controversy, and I'm obviously not a medical professional, I do think since it is chronic, it would make sense that there is research that suggests that anti-inflammatory diets help many systems of the body. So therefore, even if it wasn't directly impacting the lipoedema, it's affecting your body's ability to find more homeostasis. So I can see it being a beneficial try anyway.
Jean LaMantia, RD : Yeah, I mean it seems like a no-brainer, right? And I'm just a stickler for evidence, but yeah, and there's no downside that I've ever read of being on an anti-inflammatory diet.
Jennifer Klotz, MS, RDN, LDN: Yeah, that's what I was just going to say. There's no harm associated with it. So there's no risk in trying it. Because on the other side of it, you can get a reduction in symptoms and be feeling better and in less pain. So it's an absolute win as far as deciding to try it.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: But just to reinforce though, we love that you're evidence forward and evidence focused. So you need that. So you're not misleading people or wasting their time. But this is one of those where I was just shocked when I first started to dive into it that there just isn't a lot of evidence to be found. You have to do what you're doing, connect the dots and really understand the human body because there's a lack of evidence and hopefully that will come in the future.
Jean LaMantia, RD : I will say where I can be evidence forward, I love that term, is looking at, well, what actually is the anti-inflammatory diet? Because there's a lot of misconceptions out there, and I know there are, I've read other people who, you know, write about lymphedema and anti-inflammatory, and they'll say, you know, it should be gluten-free and dairy-free and no nightshades. And, you know, it's like, well, if we look at the evidence, that doesn't hold up. So you want to do the proper anti-inflammatory diet and not just what certain people are repeating and the misconception of the anti-inflammatory diet.
Jennifer Klotz, MS, RDN, LDN: Yeah. I'm really glad you pointed that out because there's a lot of anti-inflammatory diets that people on the internet have just made up and they've, they're putting their guide out there and then you end up, you know, getting to a place where you're not eating anything and suddenly you're on a really low calorie diet because you've removed so many different foods. Right. And what I think you're focusing on is the true anti-inflammatory diet is very doable.
Jean LaMantia, RD : And my belief is your diet shouldn't be any more restrictive than it has to be. It needs to be to get results and evidence informed. So if you're including gluten-free in your anti-inflammatory diet, well, evidence says that's not the case. In fact, high fiber, which is more the case with a gluten-containing diet, is anti-inflammatory. Now, if you suspect gluten's an issue, get it tested. Get your gluten, you know, your tissue transglutamase, IGA test done, 100%. Do not, oh, this is a, listen, I can get really ranty about this. I hate it. I know, I'm with you. When people have come to me and they've been told to go gluten-free and they, you know, their symptoms all clear up, it's like, okay, well, I really need to know if this is celiac disease or not because- Yes. Anyway, I won't get too ranty about it, but definitely I'll just say test it before you go on the gluten-free diet.
Jennifer Klotz, MS, RDN, LDN: Yes, this is a good rant, though. I see the same thing in my practice because I think what gets lost in translation with people going on these elimination diets and realizing, you know what, no, gluten was something that was bothering me. First of all, did you do the elimination diet correctly? Do you really know it's gluten? Because from my perspective, people blame gluten, and it's actually other things that they're not digesting well, that just are often combined with the presence of wheat, and it has nothing to do with gluten. And then exactly what you're saying, because if you have celiac, then many people are unaware that that means then you should be avoiding wheat in your shampoo, and you need to be avoiding wheat in your makeup, right? The the layers that most people are unaware of because they think they solved the problem. But if you're not tested and you don't know if you have celiac, then you're actually causing, in my opinion, more long-term harm because you're exposing yourself continuously to small amounts of gluten because you're unaware that the tiny amounts matter for you individually. So for anyone listening, if you think gluten might be an issue, you don't want to stop eating it. You absolutely want to get a blood test done because you want to know, is it celiac or is it potentially, you know, you know, non celiac disease, gluten sensitivity, that is a real thing. Or wheat allergy or wheat allergy issues. Yeah. Yes. And you want to work with someone who's going to help you know exactly what's going on with your body. Because what happens, what I'm seeing a lot of currently is people who did elimination diets five to seven years ago, and now they're presenting with more chronic symptoms, more chronic issues. And it's because of this messiness that we're talking about, which is you never figured out what was going on with your body to begin with. You just removed something that was bothering you. But you didn't get the full story from why it was bothering you. And it was still bothering you on a low grade level, most likely. Right.
Jean LaMantia, RD : And that's one thing I hear repeated by non-dietitians in the lymphedema and lipedema community is somehow somebody somewhere said you need to be gluten-free and it just it gets repeated and I think because the first somebody was a health care professional then the other health care professionals you know repeat it but no one stopped to actually look at the evidence and the research and Yeah, it's unfortunate. That's a big one of the big myths I see in this community that gets passed around that they should be gluten-free, but I always say get the blood test first. If you're negative and you want to go gluten-free after that, fine, but don't do it without the blood test.
Jennifer Klotz, MS, RDN, LDN: Yes, do the blood test because it's really difficult to then get a blood test after you've been avoiding it for a long time. It becomes really messy and we want to avoid that for you. Yeah. Besides the fact that, I think you brought up a really good point, is gut health is so key for disease prevention. I think with the popularity of just going gluten-free preemptively without knowing if you should be or not, I'm seeing a lot of people with digestive issues now because they were chronically low fiber for years.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Low fiber, and you shared, Jennifer, an interesting study with me that said that people get a staggering amount of their prebiotics
Jennifer Klotz, MS, RDN, LDN: from wheat. So they're not replacing it with something that can actually nourish the prebiotics in the gut and then actually then be able to stimulate your good bacteria. And so wheat is the number one way in America that people get that prebiotic component. And so by preemptively removing it without working with someone that's going to help you replace it and know how to replace it well, you're actually creating more of a long-term issue. From my perspective of working with a lot of people who have a lot of different chronic health conditions, this starts to play into it.
Jean LaMantia, RD : Yeah, and the gut is important for lymphedema. If you think about, you know, if you can picture your intestines and you picture those villi, right? All those little fingers. Yeah, the fingers. The center of each villi is one single lymphatic capillary. It's called the locteal. And when you are eating, your diet, which is a mixture of all kinds of different foods, the body obviously is going to break those carbohydrates down into single sugars. It's going to break the proteins down into amino acids. It's going to break the fats down into fatty acids. So when you look at the fatty acids, which are, of course, chains of carbons with hydrogens attached, some of those are short chains, like six carbons in the chain. Some of them are medium, which is up to 12 carbons. And then some of them are long chain, which is longer than 12 carbons. So the short and the medium chain fatty acids can get absorbed from the small intestines directly into the portal vein. So they're essentially absorbed by the body. The long chain fatty acids cannot, they're not soluble enough to be absorbed there. So they get put into a chylomicron, which I think of as a fat transporter sphere. And that goes through the lining of the small intestine into the lacteal, so into that lymphatic capillary. And then the lymphatic capillaries of all the clusters of lymph nodes, you know, a person can have 400 to 700 lymph nodes in the body, the biggest cluster is in the mesentery, so the lining of the small intestines, right? And so that's got to work all its way through those lymph nodes and go up the central lymphatics all the way up the middle of your chest to your collarbone area. And that's where those long chain fats are absorbed is up by your neck. right? So if you don't have healthy gut, if you don't have healthy lacteals, then you're malabsorbing fat in your gut. And so some people with lymphedema are even noticing like it seems to be moving, it seems to be spreading, it seems to be coming into my gut, or I'm getting all this abdominal obesity and all these issues are happening. Well, If you don't have a healthy gut, those lacteals can't absorb what it needs to. So, prebiotic fibers are very important. Probiotics, so good, you know, healthy bacteria, those are also important. And I think the fasting, as we mentioned before, is important, you know, to help process all of that. So, I think it's key. It's key for having a healthy lymphatic system.
Jennifer Klotz, MS, RDN, LDN: So to build on top of that, we really like to take a holistic lens with how we support women and their health. So are there, we like to say, you get to add tools to your health toolbox. So is there, looking broadly, we're talking about things that you can do physically, including compression and massage along with diet, but are there other modalities or areas that you suggest that people can look at to add more tools to their toolbox to support these specific conditions?
Jean LaMantia, RD : Yeah, you know, great question. I did a whole webinar series in the fall of 2022 and I called it complementary therapies for lymphedema. There you go. 20 different complementary therapies because I first thought you know I was actually working on a course for lymphedema therapists to teach them about nutrition and I thought okay well We've got the four main components of complete decongestive therapy, which is compression, manual lymphatic drainage, skincare and exercise. And of course you've got nutrition in your toolbox, which have several components to it. Well, then I knew about taping and taping is like use that athletic tape, which people, you know, you often see when they're on the Olympics, they have these, you know, taped up shoulders. It's that same stuff. Yeah. That, that can help with lymphedema. So I knew about that. So what else is out there? Well, there's all kinds of like kind of low-key devices like yoga, especially lymphatic yoga that helps move the lymph. There is just breath work, because using your breath can help. And then there's really high-tech devices like hyperbaric oxygen and low-level laser. And there's all kinds of devices, whether using sound or light or vibration or heat. So there are so many complementary therapies for lymphedema. The trick would be, you know, finding the practitioner who uses that modality, who's familiar with lymphedema. So I think we need more time to get out of the research realm and get into the practice. But from where I'm sitting, there's a lot on the horizon that's going to complement these therapies and be added to that toolbox.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Yeah, that's really exciting. Lymphatic drainage is it's skin stretching. I really like that. That's the way you describe it. And you do see a big difference. And again, I see that it just helps people in general to support their bodies in these ways. And I think it's going to be wonderful to see what else comes online for people to have access to, including the leg massagers, which were really big for our dad, very similar to the high tech ones that you can get through insurance. But more available on a mass market level if insurance fails you, which it did for our dad and we were able to still kind of cobble together our own solution.
Jennifer Klotz, MS, RDN, LDN: Yeah, we cobbled together our own solution. And I do, but I do think that's the advantage of understanding why do you keep trying and why do you keep trying to find a solution? because you understand the long-term impact if you don't support it. And that's what we're trying to do here is give people options and understanding of how to work with your health practitioners. But if they just are not on board with supporting you in it, then knowing that there's other options, there's other health professionals that can support you in it. And don't stop advocating or fighting for taking care of yourself.
Jean LaMantia, RD : Yeah, and if people need ideas, I've got a free blog that they can read. I've got blogs on herbs for lymphedema and pumps and all kinds of stuff, and then webinars and things like that to introduce people to the different devices. I don't have an agenda. I'm not trying to sell a certain device or anything. I just put it out plainly. Here's the research. Here's what they found. And what I do at the end of the webinars, I do a cost benefit analysis and a risk benefit to decide where to put your limited time and money resources and in which modalities and you know honestly you can also just kind of do that gut check what appeals to me right yes yes one thing that a few of my students have tried is reflexology lymphatic drainage and oh my gosh they love it they love it it's so relaxing and it moves the limb so there's there's lots of stuff
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Yeah, we'll put the link to your site in the show notes. It's such an excellent resource. It is a wonderful resource for people to access. And I want to leave them with one more chance to kind of tap into all the wisdom you've collected over the years. And that's what the final question we always ask, which is, what is one change that was the most influential in your personal wellness journey that you would like to pass on to our listeners because you believe it could change everything for them?
Jean LaMantia, RD : So in my personal wellness journey, I guess it would have to be around cancer and being a cancer survivor. And I think it would be not so much the individual things I'm doing, but just that daily reminder of, okay, I'm doing this, okay, I drank my green tea, or I'm putting double the onions in this recipe, right? Reminding yourself of the good things that you're doing, keep highlighting it in your brain. I did this, I did this, I did this, like go through that mental checklist, because otherwise, if you're just focused on, oh my God, I don't want my cancer to come back, or I don't want my lymphedema to get worse, or I don't wanna add more weight to my lipedema, Right? That can really get heavy. So just go through that mental checklist of, okay, I did this, I did my exercise, I did my walking, I did my deep breathing, I did my manual lymphatic drainage, I ate all my vegetables at lunchtime, right? And just keep reminding yourself of all the good things you're doing.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: I love that. It's, I heard it said you want to be your best cheerleader. And in those moments you're, when you cheer for something or when you celebrate your brain attaches attention to it and it makes it easier to do it again. And so there's all these amazing benefits for just being present enough to cheer yourself on for what you're actually doing.
Jean LaMantia, RD : Right. And instead of the opposite, which is focusing on the missteps, right? Yeah.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Lack of perfection when you're tired.
Jennifer Klotz, MS, RDN, LDN: So it's… That and I can start to feel like you're not doing enough if you don't take a moment to go through that list. And let's doubt. Oh, I did do all these things. These are supporting me. These are taking care of me. I showed up today You know what my brain was lying to me It was trying to just focus on the few things that I didn't get to but I can try and do those tomorrow Today I did enough. I took care of me and So I absolutely love that because I feel like everyone has, I call her Miss Negative Nancy in their head, and you're just working on telling her that she can leave and we get to focus on reframing and understanding that we are taking care of ourselves and you're doing the best that you can each and every day. Yeah.
Jean LaMantia, RD : Progress, not perfection. Yes.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: Each and every day. That's a wonderful piece of wisdom to leave people with. And I know we have barely scratched the surface.
Jennifer Klotz, MS, RDN, LDN: We barely scratched the surface. I had so many other things that I wanted to talk to you about, including infrared saunas and selenium. Yeah, she has a list.
Heather Young, C-IAYT, E-RYT 500, CPT, CES: So we'll just have to have you back. But in the meantime, we can't thank you enough for just taking the time to be with us, to share your wisdom with everyone who's listening to the podcast, and to pass it on.
Jean LaMantia, RD : Right. Well, thank you for the opportunity. I'm always happy to share about these two under-recognized and under-treated conditions. So thanks for giving me the platform to talk about lymphedema and lipedema. Absolutely. You're so welcome.
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