Food, Fiber, and Flexibility with Lorna Ryan

Dr. Linda Bluestein: [00:00:00] Welcome back, every bendy body to the bendy bodies podcast with your host and founder, Dr. Linda Bluestein, the hypermobility MD. Today, we'll be talking with Lorna Ryan about nutrition. This is such an important topic, and I know so many of you have so many questions about what you should be doing when it comes to food.

This is something that I found to be really, really important for me when I went from having so much pain. And as I often describe it as having pain in all capital letters and was encompassing every aspect of my life. It was basically taking over my brain during every waking moment and interfering with my sleep of course, as well to having lowercase pain and even starting to go more and more into the background.

And now I don't even have pain most days, which is [00:01:00] obviously fantastic. Lorna Ryan is a member of the London Hypermobility Unit and she serves in the International Consortium on Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders as the chair of the Diet and Nutrition Working Group and member of the Pain and Fatigue Working Group.

She facilitates EDS Project ECHO Nutrition, presents for non profit international organizations and contributes to collaborative research. I am so excited about this topic because nutrition is key for our healing and is so essential for life and it should be something that we can enjoy. We covered so many of the frequently asked questions during this conversation, so I hope that you will enjoy it.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. Let's get started.

Okay. Well, I'm so excited to finally get to talk with Lorna Ryan. We have had [00:02:00] this scheduled several times and I think you were sick once. I was sick once, like we've had so many hiccups along the way, but it's great to get to see you finally. 

Lorna Ryan: Yeah, it's a delight to finally align our diaries and be chatting today, Linda.

Thank you for having me. 

Dr. Linda Bluestein: Yes, of course. Of course. I get to see you in some meetings from time to time, but this is a conversation that we've been wanting to do for quite a while, and so I'm excited that we're finally getting to do it. Yeah, me too. Very overdue. Yes. Yes. Um, and I know it's quite late where you are, so I hope that I'm not keeping you up too, too late today.

Lorna Ryan: No, it's not too late. 7 p. m. It's just delayed dinner slightly. 

Dr. Linda Bluestein: All right. Well, that's, that's late enough. So we'll go ahead and get started. Um, can you start out by telling us why nutrition is such an important topic for hypermobility spectrum disorders and the Ehlers Danlos syndromes? 

Lorna Ryan: I think the key factor is it's the opportunity to nourish the body and help all of our wonderful pathways [00:03:00] that food and nutrients deliver.

And it's no more important for EDS than it is for any other complex health condition or just being a human being. But in EDS, we have the opportunity to make gains in our health outcomes by nourishing the whole of our systems, particularly the lovely gut. 

Dr. Linda Bluestein: Yes. Yes. And we know that a lot of people have a lot of different GI symptoms and we'll definitely be getting into that, especially in the second half of the conversation.

So super important. So we know that with HSD or hypermobility spectrum disorders and, and EDS, that there are also a lot of different comorbidities that come along with that. So like mast cell activation syndrome, which again, we'll get into more of that in the second half. Yeah. Um, and postural orthostatic tachycardia syndrome or other forms of, of dysautonomia.

When it comes to, uh, dietary plans, if you will, cause of course a lot of people will have said, Oh, well I've tried, I've tried vegan or vegetarian, or I've tried Mediterranean or low histamine, anti inflammatory, [00:04:00] low FODMAP. I'm just mentioning some, right? Gluten free, dairy free, carnivore. Is there any one diet that is more commonly.

A really good fit for people or what are your thoughts on that? 

Lorna Ryan: So my thoughts and also literature is that there isn't one diet that's going to be a good fit across the broad stroke of hypermobility or EDS. The best diet is the one that someone is going to eat food on a regular basis and without restriction.

We know the downside of restricting. If anything, the one that does help somebody nourish is going to be where we're just manipulating foods rather than restricting and not sticking to a sort of rigid plan. That's never going to work. We want flexibility because also the big caveat is that no one day is the same.

No one's symptoms are just plateau. We're up and down and our dietary intake needs to reflect that as well. 

Dr. Linda Bluestein: Yeah, that's definitely true and [00:05:00] I think that does make it so hard to make correlations between foods that we eat or other things that we do and our symptoms because like you said no two days are the same and I know a lot of people really get frustrated by that totally understandably.

You know, they're trying to make these connections, yeah. 

Lorna Ryan: Yeah, and I hear it a lot when people first come into clinic for support, is that they feel a diet's done really well for them and served them well and they don't understand why they've now got new symptoms. And that's because we can't just have the same pattern of eating and expect it to suit.

It's like, you know, it would be like having a wardrobe, you soon get fed up of some colors and you want a bit of change. And that's the same with the body. 

Dr. Linda Bluestein: Interesting. Um, if somebody was following a certain, and I love that you're talking about right away from the very beginning, you're talking about restriction and how we need to think of that.

I think flipping that compared to what so many people think of when they think of nutrition and these [00:06:00] conditions, I think a lot of people think of, what do I need to restrict? What do I need to take out? What what's causing me problems rather than thinking of food and how important it is to nourish the body and provide the body with the essential nutrients and things.

So I love that you're immediately getting us into a different mindset, which is really important. Um, and I, and I love that you're talking about this mindset of just because a certain plan that you've been trying seems to have worked for you for a while, that it's not going to work for you necessarily indefinitely.

And that if you have a change in your symptoms, that type of dietary plan that you've been following actually could be part of the problem, if I'm hearing you correctly, or, uh, maybe you'd need something different at that point in time. 

Lorna Ryan: Yeah, absolutely. And it's not even where the symptoms fluctuate. It might be environmental.

It, you might shift season. If you're living in a country that goes from hot to cold and your body's going to potentially need different things from your diet in that [00:07:00] environmental shift. You might change jobs, you might go on holiday, and there's all these things that need to reframe what you're eating and not just blame the fact that you've been following one solid diet and a lot of people have their key must haves and you know, I like saying to my patients, we're not robots and we have to be a bit more open to maneuvering out of what is our ordinary and our safe.

But that does, I want to caveat at this point, we do have to pay attention to what someone feels safe with because quite often there's been a lot of struggles and a real lot of suffering. And so we do understand without judgment why someone's restricting food. And so I don't say it lightly when we want to broaden up safe foods, it's a whole.

A whole Pandora's box when we go there. 

Dr. Linda Bluestein: Yeah, no, that makes sense. And if our, if we don't feel safe, if our nervous system doesn't feel safe, then we know that that has a lot of, a lot of downstream effects. So I'm glad that you brought that up. [00:08:00] So in terms of how you approach dietary intake, when people are living with symptomatic joint hypermobility, how do you actually start to approach that?

Lorna Ryan: So it's very. Patient centric and it's who's sat in front of me and the first discussion I like to have anyway is what do you miss with food if you're not consuming a wide variety, what do you enjoy in your dietary patterns and then we use that as a sort of footprint to build upon and then I'm really looking at the, the historic restriction, the current plan, the symptom management and overarching is always going to be very slow.

monitor progress. And I like people to try and make friends with fiber. This fiber gets a bad rap and I like to just slowly try to become friends and make changes very incrementally. 

Dr. Linda Bluestein: Interesting, so that's something that you see a lot of us perhaps not have enough of as [00:09:00] fiber? 

Lorna Ryan: Yeah, across the board. I think in general population actually, there's not many people that actually meet a good fiber intake or what we know in literature to be a good fiber intake.

What I observe in clinic is most people in our EDS population are concerned about protein because obviously they hear a lot about protein and collagen and it's like, I need to eat more protein, protein for energy, protein for muscles. And actually, you know, without sufficient fiber, we're not going to, be supporting our gut to use our protein in the first place.

So I see a lot of people have, for one reason or another, slowly, slowly restricted down fiber based foods because they do tend to be blamed for symptoms, bloating, fatigue, constipation. And once they're out of the diet, they're really hard to bring back in without support or knowing what you're doing. So I see it a lot.

That's why I think don't, don't blame the old fiber. 

Dr. Linda Bluestein: Right. Right. [00:10:00] And I do get that a lot. I have a lot of patients who do have problems with bloating and, uh, you know, of course we know constipation is quite common as is, as is diarrhea also, but, um, GI symptoms, I had no idea how common that was until I really started seeing more patients and it just seemed like that's, uh, I say in my practice, pain is number one, fatigue is number two, but GI symptoms is definitely, uh, number three.

They can be quite diverse and really impact someone's quality of life really, really significantly. So when it comes to fiber, let's, let's say I'm your patient today and I have been restricting my fiber because I have been having problems with bloating and how would you advise me to Start to experiment or start to add some fiber back into my diet.

Lorna Ryan: I like to go back to good old chemistry lessons with my people in clinic and really have that discussion about what is fiber. Cause it's not one thing. There's different types. There's [00:11:00] insoluble, soluble, then there's resistant starches and they all get digested slightly differently and they have different actions on the body.

And rather than just avoid, I like to. Just have the discussion of what someone feels is the problem. So what foods, fiber types do they feel bloats them or adds to constipation? And then I ask, how are you eating them? How are you cooking them? Volume, portion size? Do you have with fluids, without fluids? To really get a good picture of what the, the pivot point might be.

And then we're trying to just move the needle on. Helping someone eat fiber in a more happy way. Usually it's starting with taking skins off of the soluble fiber types. It's about mashing food. So it's already sort of in a more easy to digest form. It's about limiting volume and actually stripping back slightly and then slowly adding it in and letting the fiber go.

The lovely gastrointestinal functions catch [00:12:00] up instead of a big old sort of whammy of fibre in one go. So it's really over a course of a month that we're wanting to increase very, very slowly. And the caveat there is we absolutely have to screen for red flags, so if someone's reporting symptoms related to fibre and constipation.

Have they had a, a thorough EDS relative colorectal exam? We never want to add in fiber If there's a question over rectal prolapse, and sorry to go there so soon in our interview, Linda, but it's really, really important for our patient population and if you slowly start to increase fiber, or if someone's telling me that they're eating more fiber and they're more constipated, then I'm sending them straight back to the gastroenterologist for a thumb of review.

Dr. Linda Bluestein: Yeah, no, we discuss everything on this show, and so it's very important to mention these things early on because I think that That's, like you said, these red flags, we want to make sure that we're not missing them. So, so you said [00:13:00] something about the peeling the skins off. What would be, what would we be peeling the skins off of?

Lorna Ryan: So there's, and I'll tell you, I get so many people come to clinics. asking me about things like inulin supplementation for fiber. But the good old humble parsnip, which I know some countries, depending on your listeners, might not have parsnips, but parsnip is really rich in inulin. It's a wonderful fiber type, but it's hard to digest with the skin.

So we're just going to take the skins off that. We might be taking the skins off of other fruits and vegetables and also pits. and maybe some hard stems as well. Um, but we're also going to be cooking down so that we actually change that molecular structure of the fiber. Um, stewed apples is one of the perfect examples.

I think it's nearly every nutritional professional's Preferred type of fiber to help gut function. And we're going to stew it or boil it and release that pectin. And for people with quite delicate GI's, we might just want to take that skin off while we're introducing it. [00:14:00] So it's all about manipulating fiber and looking at basic 

Dr. Linda Bluestein: chemistry.

Yeah, that sounds like a good idea. And as soon as you were saying that, we're in the fall right now, and I was picturing, like, cooked apples with cinnamon, and that's like, that sounds really good. What about spices? Are there, yeah. 

Lorna Ryan: Oh, I love spices, because again, a lot of our population feel that they can't have many plant based foods.

They're sort of, Once you have really, really severe GI symptoms, it's very natural to feel, I can't have those foods, and you do become a little bit scared. But spices and herbs, and I'm talking about herbs in the culinary sense, not herbal medicine, they offer a wonderful Antioxidant rich compounds, fiber rich compounds, depending on the type and flavor.

And so they are class as a plant, so it counts to your, you know, plant consumption and diversity. So, like you say about this, the baked [00:15:00] apple add on some chopped walnuts or ground walnuts for a little bit more sort of nutty fiber. But if that doesn't aggravate any symptoms, cinnamon, basil, thyme. Oregano.

There's so many herbs and spices that can be beneficial. Um, black pepper, obviously, turmeric, the list goes on. And there they offer that small volume, but nutrient dense options for people 

Dr. Linda Bluestein: to experiment with. And in terms of things that we're mashing up, it could be A whole host of things or other specific things that you recommend that for?

Lorna Ryan: Yeah, it would be the harder to digest like root vegetable. If one thinks about they might be cooking, um, say roast beef with roast potatoes, broccoli, a squash or pumpkin, then maybe we're going to be mashing down those root vegetables and If one needs to, for their gastrointestinal, we might also mash down the protein rich as well, so like the red beef, if you can tolerate it, or the [00:16:00] chicken.

It's just changing that structure. It's actually technically called mashing things down to make it easier to digest. So we can do that to all of our food bases. But with the fiber, it would be apples, beans, oats were going to be really, really soaking. Lentils would just be blending down. So, we can actually really change the structure.

So, beans, most people, I don't know if you have it in your clinic, a lot of people in our community are scared of beans. They're scared of how they don't digest them well. They have effects that they don't like. Um, but I love in my clinic, just looking objectively and out the box to things like having a bean, um, flour and making truffles is a good way to get beans in.

And it's much more easy to digest than trying to just have like the whole beans briefly cooked. 

Dr. Linda Bluestein: Okay, when you said truffles, my mind goes to, like, a kind of candy, so I don't know if that, are you [00:17:00] thinking of truffles in a different way than I 

Lorna Ryan: am? Potentially, and it might be the British to American.

Truffles as in the chocolate truffles. So I like to use dark chocolate, yeah, dark chocolate, black bean, flour, or just mashed down black bean, um, are my favorite go tos for people, especially when people think of feel they can't have desserts. It's like, let's open up the world of what we frame as a dessert.

Um, so yeah, those kinds of truffles and it extends to things like making cookies, making pancakes, you know. 

Dr. Linda Bluestein: Okay. Wow. This conversation is suddenly making me very hungry. And I'm thinking if you have, if you have any favorite recipes for those kinds of things, cause you're right. Like we, we want to feel like we are getting to have those treats too, because I think so often when we're in pain, we don't feel good.

We don't want to feel like we're just depriving ourselves all the time. So if we can take some of these healthier foods, but then, or I shouldn't say healthier, like some of these foods that have important [00:18:00] nutrients, but if we can utilize them in ways that also feel like a treat, then I think that might have multiple benefits.

So if you, do you have any special recipes you can share? Cause we could link them in the show notes or, or, uh, send them out as part of the email blast or something like that. 

Lorna Ryan: Yeah. So it is, it is all about reframing food and it's not good. It's not bad. It's what is. beneficial and what's going to suit somebody.

Um, I'm a huge fan of poaching fruit. So we can have poached pears and we can have a little bit of, if you can have dairy, a little bit of ice cream. Um, we can also mash down fruit and I love watermelon ice lollies or make a sorbet. And then you can add that with a few little fresh foods. Uh, baked cherries.

with dark chocolate is quite sumptuous and people feel that, oh my gosh, it's a proper dessert. So there isn't really any recipes per se, it's just about, I like people to feel the freedom and safety of ingredients and [00:19:00] just get experimenting in the kitchen. But a baked apple, chopped walnuts, a little bit of maple syrup or honey, bake it really well, that's delicious.

Um, yeah, so stewed fruits. Um, everything like that, but I'm also a fan of like the Japanese style of making rice dumplings and mochi and using bean flour in that way. Um, so yeah, lots, lots of things to experiment with. 

Dr. Linda Bluestein: So I really like this too, because I have a lot of problems with my jaw. So like a lot of our patients have a lot of TMD and so apples are something that I normally can't otherwise have.

But what you're describing is something that would be. Perfect for me. I love that. Let's talk about protein because you, you brought up the P word and uh, this, it's such a hot topic, right? It's like, you know, uh, depending on who you ask, am I getting enough protein, not getting enough protein? What should we know about [00:20:00] protein?

Lorna Ryan: Oh my goodness, this is like a whole day's topic I feel. Right, 

Dr. Linda Bluestein: right. 

Lorna Ryan: So I think there's a couple of myths that I hear a lot in clinic is that people feel demonized if they choose to or need to for religious purposes follow a fully plant based diet that I can't get enough protein. So we need to first of all understand that different types of proteins, and that there's, you know, complete, that's called complete from animal based products, and then the non complete from plant based.

But if we're picky and choosy on the plant based, so things like beans, legumes, lentils, green peas, brown rice, And then our lovely tofu, we are getting an abundance of the full breadth of amino acids except for a couple lysine. Depends how you pronounce it. I never say it right. Leucine or lysine from, um, I say leucine, but I don't know if, I don't know if that's right.

I never pronounce things well. [00:21:00] Um, so lysine is only available from animals. So when someone feels that they're not consuming enough protein, my first question is, why do you feel that you're not having enough? Because there is, like you just go onto any media platform and it's bombarding of, you know, have more protein.

And it's generally coming off the research for exercise based, performance based needs. Um, and there, there is some very robust literature for the chronic health space. So disease based needs, if you're recovering from surgery, there's an increased protein need. If you've got a particular sort of disease presentation, you might need a higher protein need.

We don't sadly have anything like that for EDS yet, but we can piece it together. And what we're knowing that we need is sufficient protein at every meal, sufficient protein to suit one's individual needs. Because again, we've got a very wide stretching [00:22:00] ability in our community. We have people that unfortunately, are confined to bed and they're maybe not very mobile.

Then we have other people that are really trying to keep their life together and working hard, trying to do exercise, and they might be under a lot of stress. Then we might have people that are fully able and they just have their struggles. And then we go all the way up to performance athletes. So we can't ever say what is the one protein need, but what we do know is that we're It's not just the protein we eat, it's the protein we digest.

So we want to optimise digestion so that we're actually breaking down the protein to use it as the amino acid building blocks because it's for every structure in the body. It's a very long winded answer I'm afraid. The first thing I'm interested in is somebody's, um, first we want to check bloods. I want to see if there's any sort of low, high elevated creatine to know what someone might be, um, [00:23:00] Physiologically, what's going on with muscles.

Make sure someone's kidney function is okay if I've got questions about protein intake. And then it's all about that question and answering, like, when is your fatigue? How do your muscles feel? Do you ever get things like DOMS if you're exercising well? And then just piecing it together. And, um, People don't often need as much protein as they 

Dr. Linda Bluestein: think they do.

So DOMS being delayed onset muscle soreness, and so are you saying that that can indicate that you need, that a person might need more protein or that they were able to exercise hard enough to get DOMS, so maybe their protein is adequate? What might be the correlation there? 

Lorna Ryan: Yeah, thank you for also explaining what the initials mean.

Um, it's sometimes people feel they need more protein because they come to me and they say, Oh, I experienced DOMS or my physio says I get DOMS so I need more protein. Um, obviously in our hypermobile world, I, We need physios to assess what exactly is going on. Is it delayed [00:24:00] muscle onset? Have you been working hard enough?

That's outside my wheelhouse. But when it comes to the protein intake, we do find some people fare better having a higher protein intake within that 20 to 30 minutes of intense exercise to help the muscles sort of, um, uh, regenerate well. But I also want Before that for muscle function, whilst we are there, is what's going on with someone's carbohydrate intake, glycogen stores in the muscles to start with.

So it's never, ever one thing in isolation. 

Dr. Linda Bluestein: Yeah. And, and as you're describing this too, I, I'm thinking of another challenge if, if people are, let's say they have dys Denomi and they have difficulty with that right. Posture, and so they're. And, or for financial reasons, they're more limited in what they can purchase at the store.

And so they might be buying more like prepared foods and things like that. Do you have any recommendations as far as, as far as that goes? 

Lorna Ryan: The overarching message [00:25:00] should be eat, enjoy what food you can have available to you. And there's many barriers in our population. There's money to buy fresh food. And I don't like the argument of organics best because that's.

Not many people can afford a fully organic diet and, you know, we'll set aside the argument of whether that's actually better for you or not. Many people don't have the options around them for fresh fruit and vegetables, like shops wise, depends where you live. And then we do tag into many areas of barriers when it comes to ability.

There might be the fatigue, the pots, there could also be, um. ability to cook, even just the heat in the kitchen. So if someone wants a pre prepared meal, then we are looking for one that has less additives, less emulsifiers. So as good to what you'd cook at home, but a good old frozen meal is wonderfully nutritious.

Sometimes frozen [00:26:00] food can be more nutritious because it's, it's nice and the nutrients are stable in the freezer. Um, And you know, if some people, a takeaway is what they're going to eat that day, try to make a good choice in that takeaway, but it's nourishing you, it's giving you food. I'd prefer someone to eat than not eat because they're scared of, um, tinned food, packet, like noodle packet, dry food or frozen food.

Yeah, so it absolutely has a place in our diets. 

Dr. Linda Bluestein: And speaking of, uh, which the protein, I feel like, I feel like you said, we could definitely talk about that for hours and hours and hours. Um, but I'm also going to bring up another thing that we could talk about for hours and hours and hours, and that is collagen.

And obviously, this is an area, I shouldn't say obviously, but I think this is probably an area where we desperately need more research, especially when it comes to people with symptomatic joint hypermobility, because we don't know why a lot of people are hypermobile. Um, but what are your thoughts? And what does the research show on collagen [00:27:00] supplements?

Lorna Ryan: Yeah, this is, I mean, we could do like a whole day. It's a real sit on the fence thing with collagen supplementation in the world of sort of nutrition and human health anyway. The research is really limiting. When we do look at the research that's available, a lot of it are rodent studies. A lot of it is looking at osteoarthritis.

And most of it is on skin, um, and really the research is trying to show that it increases hydration in the skin, which plumps out wrinkles. And then if we delve down a little bit more, much of the study is actually funded by supplement companies that want to sell collagen. So it's a lot of nuances. When we focus on, do our population, someone that's hypermobile with Ehlers Danlos, a diagnosed hereditary connective tissue disorder, is additional collagen in supplemental form going to help?

We just don't know. [00:28:00] Some people report that they feel it helps. And I have a few caveats when I sort of question people around this. Never want to, um, devalue someone's bias someone feels it helps. I don't want to take that away from them. But if someone's telling me that they've just started a supplement powder and it's one week and their joints are better, their gut's better, their skin's better, then we have to be like, I don't think so.

Because it likely takes three to six months to really start getting the benefit of a collagen supplement through into tissue concentration. What I find, which I find, pick my words, Linda, but most people don't talk about it, is that a lot of collagen supplements are bound with zinc, B6, B12, and that is going to have more of an immediate effect on energy, skin, and the other things people might feel it helps.

So when, I think it [00:29:00] was, um, 2014, there was a randomized trial and it looked at objective measurement on the skin and it found no difference between, uh, I think it was a three month, don't quote me on that. I can find the study and give it to you for the show notes. Um, so, It's looking at like 12 percent of water increase in the skin, and so this is where you might feel that collagen is going to help.

If we delve deeper into our structures, and I think this is why a lot of people want to take collagen for hypermobility and EDS, is joints, muscles, tendons, um. It's really sitting on the fence about if it's going to benefit. What we do know is if a collagen supplement's going to help, it needs to be a short chain peptide.

And so, the big thing I'd like people to understand From a nutrition science point of view, is that not all collagen supplements are the same. We have denatured, which is where [00:30:00] it's not been synthetically altered. We have hydrolyzed, non hydrolyzed. We have to be breaking down those peptide chains to the smallest possible Um, literally like bead so that we can actually utilize it.

We need to be able to digest it well in the first place. Um, I think it's quite promising around the osteoarthritis, but you're right. If we could have a really good study on EDS, it would be wonderful. But in reality, we would have to be dosing to quite a high dose over at least six months and have really good measurements.

Um, yeah. This again is a very long-winded answer, isn't it, Linda? 

Dr. Linda Bluestein: No, that that, that's okay. It's a, it's a very important question. It's, I'm sure one that you get a lot and a lot of people wonder, well, does it fall into the category of unlikely to hurt and might help? So if they can afford it from a cost standpoint and if they tolerate it, okay.

Is it, is it one of those things that, you know, try it and see what [00:31:00] happens or, or you don't think that's the case? 

Lorna Ryan: Well, here's the thing is yes, it does come in the category of. likely not to do any harm. Um, however, too much hydrolyzed collagen will give you diarrhea. And so I have quite a lot of people come to clinic with loose stalls, gastroenterology, everything's like fine.

So we know that there's no pathology there. And when we really delve in and I sort of say, so when did you start taking the collagen supplement and when did the diarrhoea start or the bloating and it does sort of match up and quite often when we then either half dose or take away the collagen peptide supplement, loose stools, go back to normal.

So for some people, just be aware that it does depend on your digestion rate. Obviously, we have different transit of gut motility rates. If you're quite quick and maybe you're not digesting the amount of collagen you're taking in the supplement, you might get some sort of quite, some people actually have [00:32:00] quite, um, urgent diarrhoea from the collagen.

But it's also very important to break down what a collagen supplement is because we are talking about the three major amino acids. It's the glycine, proline, and hydroxyproline. And these are Found in animal produce, but the most important thing is if we're wanting to use collagen supplements to help our EDS body We absolutely have to have its cofactors to help collagen synthesis.

And so we do still need to be consuming It's proline if we can get it in the diet Eggs white to be particular is a good example. Not everyone can eat those. We're wanting our vitamin C rich foods. We're wanting to have our sulfur rich foods and a plethora of antioxidants. So just be mindful that yes, collagen supplementation might help, but it's not the full stop of the story for our bodies.

Dr. Linda Bluestein: Well, that's great. That's great information. Um, we're going to [00:33:00] take a quick break and when we come back, we are going to talk about the microbiome. We are going to talk about dysautonomia and mast cell activation syndrome and so much more. So we'll be right back.

This episode of the bendy bodies podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes community patient to patient for the common good. I am proud to serve on the Inaugural Board of Directors for EDS Guardians, a small charity with a big mission and a big heart, now seeking donors, volunteers, and partners.

Patient advocacy and support programs available now, travel grants launching in 2025. Learn more, shop for a cause at their swag store, and join the revolution at edsguardians. org. Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe, and comment on YouTube, and follow, rate, and review on all audio platforms.

This helps us reach so many more people and spread the information to [00:34:00] everyone. Thank you so much again, and enjoy the rest of the episode.

Okay. So we're back with Lorna Ryan talking about nutrition, such an important topic. And I would love to ask you about people with mast cell activation syndrome, because we know that there is such a high prevalence of mast cell activation syndrome. And I keep saying it should be, I think it should be mast cell activation spectrum, uh, because it's such a wide spectrum of, of symptoms, right?

We have people who seem to have, you know, uh, On the more mild end, and we have some people who are really, really struggling a lot. And so a lot of people, I think, uh, will immediately think, Oh, I have to avoid all high histamine foods. I need to go on a low histamine diet. Um, you know, these are all, these are the definite supplements I need to take, but, but it's still not a one size fits all, right?

And, and are there those some guidelines that you can share with people or some certain things that you think [00:35:00] are bigger triggers? Yeah, 

Lorna Ryan: and this is such an important topic and it's a massive topic and we do have to remember that mast cell disorders aren't unique to EDS, it's a whole old condition out there and it's important when we might get clients or patients in clinic that have either they feel that it's like a ding ding of light bulb moments.

They feel that they might come under that mast cell histamine issues or they have a medical diagnosis. It's about seeing how is this linking into their medical history or their EDS. The overarching thing I always want to say is Dietary wise, there's no one thing that's ever going to suit everybody and it's about just stopping, pausing and really observing what one's doing.

So it's not just food, it's not just environment, it's not just stress, it's everything together. [00:36:00] So obviously where it comes to the dietary side, most people have already started to restrict food. There's so much sort of, I call it noise on. Some platforms about low histamine diets and some people put themselves on a low histamine diet and maybe it's not working so they restrict more and then restrict more and then get really lost.

So it's hard at that point to observe the diet to figure out what's going on because they're already avoiding all the foods. So my. My pearl is to please don't restrict foods until you've just kept a very detailed diary as long as this isn't triggering for the individual. And keep a diary of everything.

We want to know, are you at home? Are you at work? Are you on public transport? Have you been to the doctor? somewhere where a lot of fragrance, what foods are you eating, what time of day, have you done exercise, what medications, what supplements, everything goes into the bucket of evaluating. And then, if we identify [00:37:00] trigger foods, they're the ones we might want to restrict temporarily rather than See how symptoms go.

And then if we can reintroduce, maybe we need to consider again that cooking. And I know you talk a lot about, you know, the, the leftover hypothesis and the putting foods in freezers. And there's, there's some wonderful, um, conversations already out there that I know you've had with mast cell and food. And it's about people understanding that what might trigger.

A histamine or a mast cell reaction for one person might not be their trigger. And sometimes we just have to be very detective to figure it out. Um, ultimately we never want anyone to be on a low histamine diet for life. And it's really important that we do align with medical professionals to try and get the right antihistamine medication.

Dr. Linda Bluestein: Yes. And I, I see that so often where people like exactly what you just said, they restrict their diet. And they're still having symptoms restrict more, restrict more and [00:38:00] that gets to be so stressful and then we're potentially losing a lot of nutrients that we need. So sometimes I hear people say, Oh, well, I love spinach, but I, you know, I hear that it's high in histamine.

So I'm going to stop eating it, whether they appear to have problems with that or not. So, so you suggest that people really think through and I like the idea of keeping a diary or a journal or something so that people can really track their symptoms and what correlates. 

Lorna Ryan: Yeah, absolutely. And we do have to go back to fiber again.

I know it's boring and I feel like I'm like Mrs. Repeat myself with it, but fiber is so important. What the gut does with, And so, we also consider if we're restricting foods that are high in histamine or histamine liberators or whatever someone wants to frame them as, we're restricting dietary intake ultimately.

And then we might be getting nutrient deficiencies, and then we might be affecting some enzyme function in the gut. And all of this is going to [00:39:00] exasperate the symptoms of what our body's doing with, with Histamine levels, mast cell activity, et cetera. 

Dr. Linda Bluestein: Because the gut is actually very important for making neurotransmitters, correct?

Yeah, very important. So it's, I think a lot of people think that, um, at least, and I sure thought this for so many years, that the GI tract was kind of separate from like neurologic. things, but they're actually everything in the body is really connected, right? So like the foods that we eat actually impact the neurotransmitters that can affect our mood and that we need in order to move and, and things like that.

So are there certain foods that we need to have in particular in order to form those neurotransmitters? 

Lorna Ryan: Well, I mean that's, that's like a million dollar question I feel because it's, we can't quite isolate just one because it's, um, neuro hormone activity or the plus the immune system. The immune system in the nervous system [00:40:00] go hand in hand sometimes.

But it does come back to what fiber does for the gut and our gut microbiota in that signaling. So we want to really nurture our, if you like. good bacteria, so the commensal bacteria. We want to try to limit the opportunist bacteria, because that's going to shift neurotransmitter activities. We're going to really want to try and support, in particular, the DAO enzyme function, which is what a lot of people, well certainly in my clinic, a lot of people come to me to say that should I be supplementing?

What should I do? Um, so the gut, the nervous system is so intertwined. We can't really just extract one food or one group of foods. It's going to support neurotransmitters. Mission, didn't hit the right term, sorry. 

Dr. Linda Bluestein: Yeah, no, no, that's okay. And I did want to ask about the gut microbiome because, you know, I used to think, oh, if [00:41:00] Antibiotics, no big deal, but now we know that The, having that good commensal bacteria is, is critically important for the, the functioning of our, well, our whole body really.

So in terms of the gut microbiome, are there things that you want us to know about that in particular in this population? 

Lorna Ryan: Yeah, there's so much and it's, it's really misunderstood I feel in our population. We don't have robust evidence on isolated bacterias, so to speak. So what we do know about the gut microbiota is really in its infancy in terms of science.

What we do know is how the gut microbiota uses byproducts of the fibre we eat. It goes down to short chain fatty acids, and then we get its different metabolites. Butyrate is one of them that hopefully A lot of people have already heard about. And so the gut microbiome is going to be our bacteria, our yeasts and our genes [00:42:00] and our viruses, just so that people get a good understanding of the microbiota.

Um, and it really is involved in a lot of signaling to the body, whether it's nervous system, immune health, breaking down of our metabolites from food. And so it's crucial to understand that we need to be really nourishing the host. So it's like the host of the immune system, the host of the gut brain access and communication.

Um, and we go back again to the biggest way to help our gut microbiota is thinking what might be negatively affecting. So medication, stress, alcohol, even, um, lots of sugary processed foods, and then what's going to help it? And it's never one thing. It's going to be good sleep. Movement to the capacity of someone's able to prebiotic foods, probiotic foods, fibers, um, making sure we don't get too constipated so that it's never one thing.

It's [00:43:00] like a big cauldron of recipe to support the gut. 

Dr. Linda Bluestein: And a lot of people will have tried taking probiotic supplements, what are your thoughts on that? 

Lorna Ryan: Yeah. Um, I won't say they're all bad because some are really robustly tested, third party tested and strain specific. And this is where they can be a joy to use for people is if you have had antibiotics, we know strains are going to be supporting that.

sort of yin and yang. If someone has had a particular sort of gut bug, then there might be strains it can support. If someone's had a bout of traveller's diarrhoea, we know that there might be a certain probiotic yeast that people can consume. So the overarching themes of probiotics, they might help in a short term if you've got the right species.

But other than that, some people think, oh, they're just probiotics, it probably won't do any harm. And it's a little similar to the collagen is, [00:44:00] why are you taking it? And what are you taking? Because many of them, particularly off the shelf products, they're not stable, and they're probably not even going to reach where we want them to get to.

If you already have an abundance of lactobacillus, for example, and you're only taking lactobacillus, it's probably Probably not going to do anything for you. And the other thing is that we do have to err on the side of caution in our population when we consider there might be some gastroparesis and slow motility.

There might be a presence of SIBO, which is a small intestinal bacteria overgrowth. And we know for that population, potentially, and I say potentially because it is an absolute not for everybody, probiotic supplementation and probiotic food, such as, um, Kombucha tea, sauerkraut, kimchi, all the things that we generally hear as wonderful might exasperate symptoms.

So, yes, probiotics are sit on the fence things. Science baths, strain [00:45:00] specific. 

Dr. Linda Bluestein: And this is where I think it's so frustrating for people because At least here in the US, so many appointments are five minutes long, so they don't really have the time to go into a lot of detail with, um, well, if they're seeing a nutritionist, it's probably longer, a dietitian, it's probably longer, but a lot of the doctor's appointments with the gastroenterologist are going to be super short and they're not really going to go into that level of detail that you're explaining in order to really determine, is this somebody in which a short course of probiotics might be helpful because they were just on antibiotics, for example.

Um, and, and I'm glad you brought up about gastroparesis because we know that, um, gastroparesis or slow movement through the gastrointestinal, in particular, uh, slow emptying through the stomach can be, uh, super, uh, impactful. And some people end up on tube feedings and even, um, ultimately some people end up on like IV type feedings.

And so if we can intervene earlier, it'd be really helpful because some people, um, end up, [00:46:00] you know, just on a liquid diet and things like that. So are there certain tips that you have for people who have signs of gastroparesis? So if they have, for example, if they get really full while they're eating or, you know, feel like they can't take in a normal amount of food?

Lorna Ryan: Yeah. And this is one of my favorite topics actually, Linda, because people really struggle and it's, you know, I don't think unless you really have struggled with gastroparesis and slow motility, I don't think you can actually understand. The real physical barrier to wanting to eat any more food. And so it's really understandable.

And there's zero judgment to somebody going, this really hurts. I'm just not going to have any more food today. And I hear it quite, um. commonly that people feel that if I don't eat any more food, everything will just move down slowly and then I'll just have more food tomorrow. But that's not actually how the gastrointestinal trap works, is it?

So actually consuming a little bit more food [00:47:00] stimulates digestion, stimulates the peristalsis, which is the muscles sort of propulsion. And so, If someone is struggling, our best tactics is to modify the food we're consuming. So we want to be having smaller volumes, maybe a little bit more frequently. And that does depict on, um, The individual.

So we can't be prescriptive to say like six meals a day or a handful of food. It completely depends. I have some people that it's literally like feeding a little bird. So we have tiny little palm full of food every two hours. So, over the course of 24 hours, we are consuming enough to nourish and sustain the body.

And this is where we have to be careful. If we're unable to do that, then yes, you need specialist dietetic support and you might need some clinical, medical, nutritional interventions there. But if we are able to consume orally, we're wanting to have our liquids away from our food. [00:48:00] We wanted to make it easier to digest.

So we go back to our mashed foods, take off the skins if necessary. We might limit foods that are really hard to digest like our, you know, our good old steaks. And if you love them, I'm sorry, but they're harder to digest. And then we just our foods. We also do have to be. Very, very mindful and respectful of how digestion does not work in isolation in the body.

Our vagal stimulatory hormones, um, our nervous system, our breath, our diaphragms doing it all interplays with helping digestion. So we do want to, with capacity, and I say this again respectfully, some people can't sit upright. If we can adopt a good posture while we're eating, if we can breathe and let our nervous system help us, this is going to be the best intervention rather than just avoiding foods.

Dr. Linda Bluestein: And I've wondered about that. If you start having some symptoms [00:49:00] related to food, then if you start getting more stressed and more anxious, and if that can Perhaps, um, you know, cause like contribute to a vicious cycle. So do you think that in some cases, anyway, for some people, if they can practice some, you know, meditation or something like that, um, maybe away from meals at first, but then maybe do a little bit of that before they start eating that perhaps that might be beneficial.

Lorna Ryan: Yeah, 100%. 100%. And it's actually an analogy that people say, do you know, when I go to Italy or when I go to, you know, the mountains, I don't have any symptoms. And when you actually look, it's not necessarily that you're eating different foods. It's that you're relaxed. You're probably not rushing foods. So we know that chewing our food really well helps digestion.

But in our population, you know, as you touched upon earlier with the chewing, it might be that you get the muscle fatigue. It might be that you actually have teeth issues [00:50:00] or the TMJ issues. You might have a sort of slower swallow or problems there. So I never want to be hard and fast if you have to chew more.

It's always about quantity. can you chew a little bit better? And then really leaning into that switch into rest and digest from our autonomic nervous system, which again is another caveat because everything in our population is caveats when it comes to digestion. If you have POTS and you've got another layer on top of the gastroparesis or slow motility, But it's all about trying to enable the nervous system to work with you.

So, um, you know, there are a few sort of, uh, digital technologies. It's out there developed mostly for IBS, but we find it helpful. There's, um, gut directed hypnotherapy, which a lot of people do find helpful. Of course you need the specialist clinician for that. That's outside a nutrition professional's wheelhouse.[00:51:00] 

If we just take a moment to relax and let our, our digestive system think, Okay, it's all right. Then we have our food and we, we try to eat slowly and mindfully of whatever that means for somebody. And then after we have our meal, we want to also be mindful that we're still digesting. So let's not get up and try to get back to work or go out for a run if you're physically fit or wash up and just sit and let your digestive system do its thing.

Dr. Linda Bluestein: Now, I like that. I like that. That makes, that makes perfectly good sense. And we know that the opposite can also happen, right? Dumping syndrome. Is that something that you see in, in your patients? 

Lorna Ryan: I don't see it too often, actually. Um, I do hear my patients say they feel that they do have dumping syndrome.

Um, Generally, people that feel that they get that sort of dumping syndrome, it's maybe more POTS related, that postprandial, um, [00:52:00] but it's very common in someone with gastrointestinal involvement. For my side clinically, what's really important is if there are clinical symptoms that you're, you know, sent away for some lovely testing and ultimately we want to make sure if it's that one to three hours post symptoms, um, that you're absolutely being checked out for things like, and not to scare viewers, but diabetes and any kind of anatomical constriction around the stomach.

Um, but usually what we find is that you have the rapid and you have the slow. So we're wanting to assess the timeframe and the symptoms. Is it gastrointestinal? Is it that vagal nervous system, um, interference and people can swing to both. It depends what they might eat. Um, I've actually heard weird and wonderful things that people have tried to do to self manage the symptoms.

Um, so yeah, it's, it's another huge topic actually. 

Dr. Linda Bluestein: What about [00:53:00] supplements? Of course, this is a whole nother, this could be a whole nother, you know, multi hour conversation, but we know a lot of people have tried various different supplements, either for the pain or for sleep or for the mast cell activation syndrome or for the dysautonomia type.

Are there certain supplements that you have found to be more beneficial in your population? 

Lorna Ryan: That is such a big can of worms. Ultimately, yes, I do have my go to clinical toolbox of supplementation that we know are very safe, that we know has minimal drug nutrient interactions and have limited excipients because, as we've already discussed, there's GI, there's POTS, there's mast cells, there's lots of things in the mix.

So, I personally want to have least ingredients in them. Probably isn't going to be a surprise. Vitamin C, Magnesium, they can be very helpful. I might lean [00:54:00] into some digestive enzymes if it's going to be helpful for someone's digestive capacity whilst we're building up a better food profile. Um, I do find if someone is a little bit more on the neuropathic style of pain, P, P E A, please don't ask me to say the long name.

Um, 

Dr. Linda Bluestein: I find that to be quite helpful. So I, I think I know how to pronounce it. I'm not a hundred percent sure. Are you talking about palmitolaethanolamide? That's it. 

Lorna Ryan: Excellent pronunciation. Okay. 

Dr. Linda Bluestein: So, so, so I, I'm not sure if I pronounced that right, but I'll make sure that we have that in the show notes or, or something.

So that's what I recommend a lot as well. 

Lorna Ryan: Yeah. I find it's really, really a nice product to use. Um, do have to be on it quite long term to see the benefits. Um, Depending as well, GI, I do love a good Celium husk supplement, very particular about the ones I use. I like it to be very finely ground, um, and then, you know, I'm not [00:55:00] actually adverse to using a collagen peptide, I must say.

If someone is not able to digest proteins as well as we would like or if they have got a limited diet and we have concerns there, particularly with more of the sort of joint areas and if someone's got frequent injuries. So, um, and I have a particular, uh, like for eggshell membrane in particular out of the collagen peptides.

So I tend to use eggshell membrane a fair amount. Um, and then there's. I mean, there's a few others that come in and out. Quercetin, I think everyone's heard about. Um, but other than that, I actually much prefer to look at what might we want a supplement for, and can we break that down and get it from food?

So like. Look at quercetin. Um, we can get quercetin from foods, not to such a high degree as a therapeutic supplement might offer on a daily basis, but we [00:56:00] can get it through food. And it's all about trying to get more of these wonderful flavonoids and antioxidants in foods as much as we might be able to, A, get in and B, digest well.

Um, and you know, I think that's pretty much it. Yeah, pretty much my wheelhouse of top supplements. 

Dr. Linda Bluestein: Sure. And, and a lot of those are ones that I, that I use as well. Um, what about your thoughts on, do you have any thoughts, I guess I should ask, on Luteolin versus Cousertin? 

Lorna Ryan: Yeah, this is so interesting and it seems to be come up quite a lot lately.

Um, So they're both flavonoids, but they are slightly different in their molecular structure. I think it's, is it quercetin that's got the longer structure? Um, again, both antioxidants, polyphenols, different foods offer different amounts. Um, I think they have different actions in the body, sort of, so the mode of action, if we're talking about the supplements.

I don't necessarily see a [00:57:00] huge problem with Benefit outside people that might be needing it for the hypersensitivity side. So I think this is the biggest difference. Quercetin in research is going to be more beneficial on swelling and things. Um, the, excuse me, I can't say it, Linda, the, um, the first one you said I said luteolin.

Dr. Linda Bluestein: Luteolin. Uh, but I'm not sure if that's right. 

Lorna Ryan: We'll go with that. Um, yeah, research suggests it's a bit better for hypersensitivity, but again, I'm going to be trying to get both of those compounds in food first, which is actually fairly difficult if you have mast cell issues and the foods it contains. So, quercetin is like the red wine and luteol is totally forgotten.

In my head, can't remember. Anyway, I can put it in the show notes for you. The food sources. Sure, sure. It's getting late and I've gone, my brain [00:58:00] fog is creeping in. 

Dr. Linda Bluestein: Yeah, yeah. Oh yeah, I know it's, I know this is always the challenging thing with the, with the time difference. And I really appreciate you talking to me and, you know, you're probably not going to sleep well tonight because your brain will be going, you know, up until the time that you go to bed.

So I, I apologize, but I really appreciate you doing this. Yes. And there's a supplement that, that I often recommend that is a combination of palmitolaethanolamide and luteolin. And, and I'm probably going to get some people saying, by the way, you pronounced all of these wrong. So we'll have to see about that.

Um, what about diamine oxidase or DAO? You, you mentioned DAO earlier, but we know that, uh, some of the DAO supplements are, uh, pork based, correct? There's also one that's pea based, I believe. 

Lorna Ryan: Yeah, DAO is an interesting one and actually is one of the things I see a lot of people come into clinic already taking.

So, I very rarely supplement with it actually in clinic. I don't think [00:59:00] evidence in literature is there enough. I will caveat that I don't have a specialist MCAS or, um, mast cell disorder clinic. Um, first of all, yes, it is from kidneys and we, we manufacture DAO in our kidneys. Um, but ultimately what I'm interested in is have you got a deficiency?

Have you had a measurement from a medical doctor and being found to have a DAO deficiency? And then I want to look at what's going on with your gut health. Are you able to sustain a good DAO enzyme function? And for that we want our zinc, our omega, um, fatty acids, our fibers, etc. So a lot of people come and they want to have, um, a DAO supplement, but they're plant-based.

And I would never suggest a plant-based one in my clinic. 'cause I just don't think the research is there because ultimately we do have to have the, the pork kidneys. Sorry for the vegans [01:00:00] out there. Um, but I'm also interested in, instead of supplementing of DAOI want to know. Is the diet offering blockers?

So, are we having a lot of beans and legumes? Are we having a lot of alcohol? Um, some medications might be affecting our DAO enzyme function. Do we have bacterial overgrowth? So, all of these things come in the mix as to whether we then would conclude that a DAO supplement might be beneficial. 

Dr. Linda Bluestein: Okay, that's really helpful.

And that's good to know about the PAA, PEA. There's so many different PEAs. That's so helpful to know about the PE based DAO that that's something that you don't think is worthwhile. That's really good to know. 

Lorna Ryan: Yeah, I've just not, and you might, there might be dietitians and other nutritional professionals out there that.

We all look at evidence slightly differently. They might be shouting at me right now. But yeah, as far as I'm aware. Yeah. 

Dr. Linda Bluestein: Yeah. No, that's exactly right. And it's, I, I sometimes [01:01:00] will see a patient that someone else has seen in our community and I'll read the note and it's like, they approach things differently than I do.

We all do things a little bit differently. differently, which, you know, on the one hand can be challenging, but on the other hand, if we all did everything exactly the same, then we wouldn't necessarily be introducing some new ideas and, and things that people might benefit from. So it can be a blessing and also challenging for people when they get different recommendations, I think sometimes.

Um, before we wrap up, I did want to ask, I think you mentioned it briefly, but I wanted to circle back to it. You mentioned butyrate. Can you tell us a little bit about that and why that's important? 

Lorna Ryan: Um, it's my favorite thing, actually. It's so important for many functions in the body. So if we're consuming fiber, um, particularly resistant starches, we're going to be producing short chain fatty acid, and butyrate is one of those.

The wonderful short chain fatty acids it's produced and butyrate can go on and have [01:02:00] so many different beneficial functions in the body, whether it's from helping to support inflammatory processes, the nervous system pathways, neurotransmitters, mast cells even. And lots of people say, Oh, I should supplement with butyrate.

But again, the evidence isn't there and supplementing with butyrate can be quite problematic. Diarrhoea, bloating, nausea, etc. and painful cramps. And again, I don't think the research in our population anyway supports using the supplement. So I say to people, let's try and help produce more butyrate in the gut by where we're able to increase our resistant starches.

So it's like Cook some rice, let it cool down. That's turning it into a nice resistant starch. It's going to produce short chain fatty acid that will produce arbutrate. So it's, it's quite easy actually when you look at the dietary [01:03:00] intake of foods and the metabolites that it produces. 

Dr. Linda Bluestein: I'm hoping that you can solve a, um, a family debate really quick.

I have, I have a very specific question here before, uh, we just wrap up, um, speaking of starches, when it comes to potatoes, whether they're regular potatoes or sweet potatoes, How big of a difference does that make from a nutrition standpoint? 

Lorna Ryan: This is interesting. I got this question a little while ago, actually, because there was some new research that came out to show that the fiber types aren't that different and the nutritional profiles aren't that different.

Um, so I'm, as it stands at the moment, going to sit on the fence because I think there's some emerging research that I'm not completely made my mind up about. But what we're looking at between the two potatoes is the, and we have To twist it even more, the purple potato as well. So we have the white, the sweet potato.

White potato is going to be a higher resistant starch, is going to be [01:04:00] classified as a simple carbohydrate. And then our sweet potato is classed as more of a complex carbohydrate, less resistant starch. The fiber types are going to be slightly differently. And some people find that they digest a sweet potato a bit better and it's going to feed our gut microbiota better.

But Again, there's always caveats. The skin of a sweet potato is a lot harder to digest and so we might want to remove that if we have some motility issues. Um, and ultimately it comes down to both have a good place in our diet and who doesn't love a potato? 

Dr. Linda Bluestein: So I love sweet potatoes and my son sent me something a while back.

He was like, you know, they're not that much healthier than regular potatoes. I was like, really? I always thought that they were. 

Lorna Ryan: Yeah, no, they're not much. And, um, if you want to geek out on it, look at the Japanese potato, the Japanese sweet potato. It's in another realm of its own. And there's a lot of nutritional differences in potatoes and some fascinating studies out there.

Dr. Linda Bluestein: So, so that might be [01:05:00] a better option. The Japanese, like, is that the purple one or no, or no, that's a different one. 

Lorna Ryan: No, it's a whole different, not breed, like species of potato. 

Dr. Linda Bluestein: Yeah. Gotcha. Gotcha. Okay. Good to know. Um, okay. Excellent. And I know that you are one of the presenters for the virtual conference that the Ehlers Danlos Society is putting out, um, in, in a couple of weeks from now or no less than that.

But by the time this Episode comes out, that conference will have happened already. Do you, do you happen to know if people are listening to this and they think, wow, I want more information. I want to do a deeper dive. Will people still be able to purchase tickets for that? Do you happen to know? 

Lorna Ryan: Um, so it's on the 2nd of November and it's on Eastern time.

Um, I've actually had the privilege of Being the lead facilitator, so I've organized the topics and the speakers and we've got such an amazing day of education. I can't tell you off the top of my head if you can purchase a ticket after the date. I know if you do register, you will be able [01:06:00] to view it after as well, but I don't think you can buy the ticket to the event afterwards.

So that bit I don't know, but I can tell your listeners is that it's. Absolutely thorough topics being discussed and yes, I am speaking as well. 

Dr. Linda Bluestein: Excellent. And I will try to find that out before we actually release this episode so that we are not leading people astray, um, when it comes to that. So, but I want, but I wanted to mention that because I know that that's something that you're involved with and I'm looking forward to it.

I think it's going to be a great, uh, a great day of information. 

Lorna Ryan: Yeah. 

Dr. Linda Bluestein: Yeah. It should be. I keep saying before we're going to wrap up, which, uh, but the last thing I want to do before we say goodbye is to, uh, if you could share with us a hypermobility hack. So some quick win for people. 

Lorna Ryan: A quick win is make friends with fiber and don't worry if on the one day you've not eaten what you would want to eat, [01:07:00] tomorrow's always another day and another opportunity to eat 

Dr. Linda Bluestein: better for you.

I love that. I love that. Well, uh, Lorna, it was so great chatting with you and I'm so grateful to you for coming on the show. Um, before we wrap up, can you share with us what you're up to and also where we can find you? 

Lorna Ryan: Sure. So you can find me at LornaRyanHealth. com and it's Lorna Ryan Health across social media platforms.

And what I'm up to is I run a busy private practice clinic and a clinic. group support program. And my latest project, which we've just talked about, has been organizing the One Day Diet Nutrition Summit. And I also chaired the Diet and Nutrition Working Group for the International Consortium on EDS. And we're busy doing some really wonderful research.

And there's five of us in a close knit team working with the society, um, on their latest research advances. 

Dr. Linda Bluestein: That is huge because we, as we kept saying over and over again, like, yeah, I feel like every time I [01:08:00] think about a topic or, you know, it depends, right? We have to say it depends because we, we, we know a lot, but yet there's so many things that we don't know.

So that's great to know that there are a lot of projects going underway. 

Lorna Ryan: And there's so much going underway that, um, obviously we're very excited in due course to share with everybody. And I just want to say that a lot of people feel not enough is being done in the nutrition space because we do keep saying we don't have enough research, but there's so much work going on and we're learning more and more to offer some more definitive diet and nutrition sort of, um, support.

Dr. Linda Bluestein: Alright, well that's, that's a great hopeful note to end on and I just want to thank you again, Lorna, for chatting with me this evening for you, during the day for me, but this evening for you. It was so great to get this information and to connect with you. 

Lorna Ryan: No, it's been delightful to sit down and have a good old chat, Linda, and thank you again for inviting me on.

It's been wonderful.[01:09:00] 

Dr. Linda Bluestein: Well, I really enjoyed that conversation with Lorna and I bet you did too. I know so many people have questions regarding nutrition and what they should do when it comes to EDS. POTS, mast cell activation syndrome, hypermobility spectrum disorders, etc. So I hope that you found this information helpful and I just want to thank you so very much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast.

You can really help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex and often unrecognized conditions. If you would like to meet with me one-on-one, check out the available options on the services page of my website@hypermobilitymd.com.

You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter and LinkedIn At Hypermobility MD you can find human content, my producing team [01:10:00] at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies Program Disclaimer and Ethics Policy, Submission Verification and Licensing Terms, and HIPAA Release Terms, or to reach out with any questions, please visit bendybodiespodcast.

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