The Myositis Association (TMA)
Autoimmune and Nutrition Webinar
Autoimmune and Nutrition Webinar – 1/29/2020
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💻 Originally aired 2020
good afternoon I am Mary McGowan executive director of the myositis Association I want to thank you for joining this afternoon's webinar on autoimmune disease and nutrition today's topic was one of the most frequently requested webinar topics in our previous post weinar evaluation I'm very excited to announce that we have 520 people registered for today's webinar we are honored to be introducing two wonderful speakers for today's educational event who will speak directly to your request for more information on this topic just a quick bit of housekeeping before we get started phones will be muted throughout the presentation however we encourage you to ask questions there is a chat box located at the bottom of your screen you can type your questions into this box at any time throughout the presentation we will have a question and answer period after both presenters are done speaking this webinar will be recorded and will live on our website for future reference for those of you who are not familiar with the myositis Association also known as TMA I want to take a few minutes to briefly introduce TMA and to highlight a few of our successes for 2019 next slide please the myositis Association is the leading international nonprofit Association supporting those living with myositis their Care Partners the medical community and researchers who care for them we were founded in 1993 by a patient who was living with IBM her name was Betty cury you see her photo in the top right corner of this slide she began the organization with 12 patients and it since then it has grown to an international organization reaching thousands of patients and clinicians worldwide in 2018 TMA celebrated its 25th anniversary and we are now an international collaborator of researchers advancing discoveries next slide please so it's a five prong approach to what TMA does we educate myositis patients Care Partners and clinicians we support patients and Care Partners and the medical community were located in Alexandria Virginia just across from Washington DC where we advocate for research and policies that meet the needs of patients we fund critical research seeking better understanding and new treatments and ultimately a cure for myositis diseases and of course we increase awareness of myositis internationally next slide please so just a few quick highlights from our successes for 2019 we added nearly 2,000 new members to the organization we held 30 support group meetings in uh the last year we had a 25% increase of applications for our research grants we published 21 articles um with the press to raise awareness about myositis diseases and TMA we held the second largest annual patient conference confence in the history of TMA with 531 attendees 96 sessions and 76 speakers we hope you all can join us at the upcoming September 2020 annual patient conference just outside of Seattle Washington this year we had 14 speaking opportunities this was a international speaking opportunities we reached over 5 million people during myositis awareness month we had a special campaign on women of color and Myositis and our esteemed medical Advisory Board conducted six visiting Professor programs at hospitals and universities across the globe I invite you all to visit our homepage myositis dorg to view our new corporate video just launched this month for additional information on the myositis Association and our efforts now it is my distinct pleasure to introduce Dr Renee lantner Renee is a patient with dermatomyositis a physician and former TMA board member she became very interested in nutrition as a means to help her journey with dermatomiositis thank you Renee for presenting on today's webinar thank you for that nice introduction Mary I'm really happy to be here and um I'm hoping there might be some familiar voices or my voice is familiar to some people that are um on the webinar um let's uh go to the next slide and we can get my party uh Parts started my party started too um so my journey with dermatomyositis um is a pretty long one I'm not going to give you all of my background but I wanted to talk here obviously about how nutrition has affected me and how it's helped me as well uh next slide please so I um I'm currently 60 but I had severe symptoms when I was 30 and unfortunately I didn't present in the exact way that doctors would have liked so I wasn't properly diagnosed and actually never got treated at all and went into remission very oddly on its own after several months but I was left with severe muscle weakness and loss and it eventually came back um very very slowly and then 12 years ago um it came back kind of with a Vengeance and then it was pretty obvious what I had and I ended up getting treated and I'm still on treatment now and I'm doing okay but I it never went back into remission so my muscles which uh for those of you who have myositis know that's the pretty devastating part of the disease um especially those of us who get it acutely uh meaning like I couldn't stand up I couldn't pick up my arms um doing anything minimally was exhausting and that improved with prenome the drug we love to hate and hate to love because it did provide a fairly quick relief but I was on it for many months and then when I was able enough I started doing a lot of strength training which I still do today and I I'm happy to say that muscle wise I'm doing I'm doing well uh but as many of us know with drom myositis the skin disease is really the hardest thing to treat and that's where I'm still having some challenges um and have gone through multiple things and um and I'm still trying to find the perfect thing next slide please so along the way as many of us uh who are dealing with a chronic illness I was getting sad frustrated um losing hope at some point that things were never going to get better for me and because I am a physician and obviously have some some science background and I've also always loved to cook and have an interest in nutrition and food I thought maybe I could start looking at that a little bit better and one of the first things I knew is that when I got started on the prazone I really had to watch my carbohydrate and sugar intake because um I knew that that would be a problem I'm someone who prescribes it frequently for my patients and I'm very familiar with the side effects so I was kind of terrified of gaining weight as it was I got the pretty fat face that we call the moon face um and I didn't want to have a really hard time uh with weight gain so I was very very careful about what I ate and uh not surprisingly I tried to stay away from the sweets and the other carbs and I really tried to focus more on um lean protein and fruits and vegetables but in addition as I mentioned I was getting pretty frustrated with a multiple medications that Wen really providing any help and I was having some GI problems as well that were probably unrelated but I didn't know so I uh wanted to help myself and I ended up going to two national nutrition conferences and that were fairly life changing for me they were actually only offered for people in the medical field so it's not something that everybody could take adantage of but certainly there are educational places to attend if you or to do online if you want to learn more about nutrition and those conferences were very eye openening for me as a patient and also help me with my patients as well as a physician next slide please so with uh early on in my dealings with the myositis Association I think I had only been a member for a year and at one of the meetings I was really looking forward to hearing a nutrition talk and it turned out Rosary istri who is a member was unable to attend because she wasn't feeling well and um when the announcement was made everyone was fairly disappointed and so I stepped up and said well I I certainly don't have anything prepared but maybe I could moderate and we could just chitchat about our experiences and that turned into me being asked to do speaking for the myositis annual conferences and I did it for a few years and I think many if not all of my prior conference uh annual conference presentations are on the myositis dorg website where they are cataloged and and archived but in general I got so interested that I started doing a lot of research and reading and wanting to prepare for these conference uh discussions so that not only helped me in my own Journey but I hope it helped other people too as I was able to uh present some of that information at the conferences and as we're doing now today next slide please so one of the things that I learned early on and I use this also in my own um Medical Practice is that autoimmune diseases are frequently associated with low vitamin D levels and I was really shocked to find out how low my level was it was a little embarrassing and not that going back on vitamin D fixed my problem but it did fix other issues that I was having trouble with so uh that in and of itself was just kind of a nice thing to learn and um so anybody who has an autoimmune disease especially uh People Like Us with dermatomyositis or polymyositis and if those of us are unfortunate enough to have other things like thyroid disorders or lupus Etc rheumatoid arthritis those are things we should make sure we have a good vitamin D level and separately I was having tremendous trouble with my GI tract my gastrointestinal tract so I finally finally uh stopped eating wheat and that really made a huge difference for me I do not have celiac disease um and as we may discuss later there is no such thing as a test for uh food sensitivity to wheat or any other food unless it's a true allergy but um I knew that just eliminating it helped me so I stopped that and for whatever reason I'm I'm pleased to announce now I can tolerate some and it doesn't bother me as much but of course we still all have to watch it for the calories uh and then just not surprisingly just eating better I felt better and um as I usually say with all of my talks uh we can get other stuff too we can get heart disease we can get arthritis we can get diabetes uh hypertension so I just um wanted to stay healthy and I wanted to keep everything else at Bay so I didn't have to worry about more problems on top of it and I wanted to stay healthy of course because I wanted to be able to continue to exercise and build more muscle and in case I ever had a relapse I'd have a little bit more cushion with more muscle mass and the other thing that I've known in practicing for years is that people who are overweight because of the virtue of all the inflammation that arises from the fat cells a lot of medications do not work effectively or hardly at all the more that we gain weight and the irony for a lot of these autoimmune diseases or inflammation diseases is that one of the best things for a lot of these is prazone or something like it and prazone as we all know can cause weight gain and then there's more inflammation and so there's more problems so you get more prazone or something else so many many drugs have been known for a long time not to work effectively if someone is overweight so that's even another reason to try to lose weight for any condition you're on for multiple reasons next slide please so the the bad news is there is no diet or supplement that will cure myositis um and like a lot of chronic diseases we just hope for the best management possible for our symptoms until a cure is reached which we're all hoping for of course uh but as I said we're all possibly going to get other things we can't pick our parents or our genetic makeup so we might get other things so we have to just stay as healthy as we can and um I'm sure Susan will talk about this too in her discussion but I I do try to follow what I preach and so I do eat a mostly plant-based diet but I do eat uh poultry and fish I do like eating beans and other lowfat proteins like lentils Etc I try my best to limit any what we call the white carbohydrates the white I used to call it fight the white and eat the rainbow um I really don't have fried foods at all because they don't make me feel well and I think we all know sugary drinks because of the high fructose corn syrup are just evil and bad and you know if we overeat and we don't feel good it's probably not something we should be eating on a regular basis um and as Susan will probably uh address too a registered dietitian can be really helpful and I think she'll touch on some of those things too and unfortunately like I said I I don't think any of us should expect a supplement to cure myositis but it certainly can in some situations that we might get into more detail about if it's not harmful it's not cating you an arm and a leg and it doesn't interact with any of your other medications it's probably worth giving it a try but unfortunately there isn't a lot of data to support lots and lots of supplements but I know we always like to keep our hope and uh I uh I don't think there's another slide but let's check nope that's it okay thank you very much um and I'll look forward to helping answer any questions uh in the future that's a wonderful thank you so much Renee we greatly appreciate you sharing your personal story and sharing that important information and also for the presentations and education that you have provided at tma's annual patient conferences um we greatly appreciate you helping us uh to continue educating the myositis Community about this important topic of autoimmune disease and nutrition I would now like to introduce Susan Whitaker a registered dietician for the MDA clinic at the University of Kansas Medical Center for 18 years and for the ALS clinic at KU for the last 12 years Susan was a speaker at our Regional Conference in Kansas City last year focusing on nutrition and the anti-inflammatory diet thank you so much Susan for sharing your expertise with us again today hello and I want to just thank everybody for listening today and and being here um thank you Dr latner for that uh great intro and I always say that I always learn more from my patients um and helping others so I appreciate you um giving your firsthand experience um next sline please this is um what I really want to talk about today is myositis the anti-inflammatory diet and what I really want to get into is what practical ideas can you use to incorporate this diet in your life if you're like me we've probably listened to lots of webinars and you've gone out of them thinking okay now what can I do today I want you to have some practical ideas that you can use um to put these um ideas into your life next slide please just going to look at a couple of things look at this anti-inflammatory diet that you've probably heard all about touch briefly on the dietary supplements that are good and then like I said before try to do some of these practical ideas on how to make the anti-inflammatory diet party or lifestyle next slide please now you've probably heard about this anti-inflammatory diet Mediterranean diet um it is the same thing why do we talk about that with autoimmune dis diseases such as myositis um what we have found is through research with this diet is we found that it decreases anti-inflammatory markers in the body and this leads to less inflammation and better symptom control um it also can help with weight loss and maintenance and Dr latner did a good job of saying that um you know maintaining your weight helps with muscles and it also helps with um other symptoms you might have um it also this diet also helps some with mood stabilization and brain health um it's been studied a lot with um uh with uh with Alzheimer's and other neural ol ological diseases so um it affects more than just the myositis that you might have going on in your life next slide please um there's certain dietary supplements that sometimes are used with autoimmune disease Dr latner she brought up a good point and I use it a lot too is there's not a lot of good quality research out there there's a lot of good anecdotal um research of people that have told us maybe what has happened for them but I use the same um uh way of thinking of things I Al I always say if it's not terribly expensive and it's not going to hurt you if we don't know for sure if it helps you I always encourage people if they do want to take them then supplements then it's a good thing calcium is a very important supplement for people with myositis to take especially if you're on prazone prazone is very much known to decrease bone density and so calcium is very important to take you might look at the calcium supplements and you might say you know what do I take there's so many um calcium carbonate is is a good supplement to take it is um cheaper than a lot of the other supplements and it's you have to take a smaller pill or less pills to get it done vitamin D is needed for for good calcium absorption many times you'll notice that some of the pills they might come in um multiples that the vitamin D and the calcium is together so that's a good way to do it folic acid is important for a lot of people to take um especially if you're on Methotrexate Methotrexate is known to is is caused to for you to decrease folic acid so you don't want to take too F too much folic acid but it's definitely something to talk about with your doctor we'll talk about omega-3 fatty acids later very good to get them in your diet by eating foods that contain them but for some people they might not like those Foods or it's it's hard to get enough foods that have the omega-3 fatty acids so some people will take supplements and the supplements that are on that picture there are a good example of omega-3 fatty acid and then a probiotic is a um is a good uh supplement that I recommend everybody take because it does help with intestinal inflammation next slide please again like I said we're talking about this Mediterranean diet anti-inflammatory diet it's the same thing one thing I really want to emphasize is it's not so much a diet as maybe a change in your lifestyle um it's a change of thinking about food um people that follow this lifestyle they tend to eat food with others they slow down when they're eating and they focus more on the quality of the food more than the quantity of a food another thing to remember is I have a lot of people ask me well what specific foods should I eat for the anti-inflammatory diet and I always like to say you know one specific food doesn't make up a difference it's really this diet as a whole um and dealing with Lifestyle Changes next slide please um this Mediterranean diet anti-inflammatory diet it was after World War II the anel keys and some other researchers they studied the health of men from different countries and what they were looking at is cardiovascular health health to begin with um why cardiovascular it was a big part after World War II when they were looking for that and what they found that the people from the area around the Mediterranean Sea they were found to have better health and why one reason that they found that they had better health is they had decreased inflammation markers um inflammation markers are big in many diseases especially myos myositis but it is um important in cardiovascular health also so this diet this um has actually been studied many times and it is one of the few that's been found to decrease inflammation and it will help many diseases next slide please so what is this mediterrania diet it's high in foods that fight inflammation one of the main things is it does avoid lots of processed foods and includes more fresh food s it um talks about eating lots of fruits and vegetables Dr lner talked about eating the rainbow so eating lots of colors of fruits and vegetables one of the main things that they do is they use lots of olive oil in that region and olive oil is made up of um a fat that is the good fat for you has more of omega-3 fatty acids and less of those Omega 6 it's got a moderate amount of lean protein especially fish less sugar and processed sugar and more exercise and activity and if you think about to what back to what do latner said worked for her and her lifestyle these are some of the things that she has done and they're working for her next slide please um the thing one thing that's uh important to learn is the difference between omega-3 fatty acids and omega-6 fatty acids omega-3 fatty acids um you'll find those a lot in Salmon sardines um fortified eggs there's eggs that you can buy that are omega-3 fatty acid fortified chia seeds flax seeds and then olive oil the um omega-6 fatty acids are for found more in those processed foods so that's why there's an emphasis on more Fresh Foods the reason we look at these omega3 fatty acids they are non-inflammatory and the Omega 6 they increase inflammatory next slide please okay so it's a great diet plan a lot of people have told me how to do it so so how do I follow it so I looked up a couple of references and resources and one of the real good ones I found was it's a um it's a website called oldways decom This is a nonprofit group that has studied the Mediterranean diet and have lots of great resources and practical resources for people um to follow they have some good um shopping lists of so when you go to the grocery store what should you eat um also there's an article on today's dietitian article it's from May 2012 and you may think that's pretty old when it comes to things like that but actually everything in it is pertinent to um today's standards and everything we're doing today next question please next slide please sorry um old ways has this Mediterranean diet pyramid on their website and I wanted to show you what it what it does is I wanted to encourage you to look at the bottom of the pyramid you notice as a pyramid is the bottom is always bigger and it goes up toward the top and gets smaller it encourages physical activity on the bottom now I know some people physical activity can vary but as Dr latner said doing as much as you can is is very important and it starts with the fruits and vegetables and the lean grains and then it goes up to the top where it has the meats and the sweets in the less variety and if you think about the diet that most Americans that we follow today we probably follow a very much inverted um pyramid than this and that is why I just wanted to show you this from the old ways site next slide please um one what's one way that you can try to follow this diet for one thing is cooking more now most of you I know know are thinking great I'm tired already I you know I'm I'm wore out I've either worked all day I've done things my muscles are hurting well some ways that you can help to get around that is to maybe do more buy more pre-prepared Foods so maybe that the fruits and vegetables are already cut up for you um we're trying to do things um ahead of time so maybe like I do on Sundays I'll try to fix several meals and then have them pre-made out and in refrigerator so that when you come home and you're you're really tired that you can have a good healthy delicious meal without having to feel more tired um fixing that um one thing I think is important is food does not have to be organic um organic can be very expensive and I know a lot of us are on um you know maybe a limited um uh you know economics and it's hard to get organic in some areas too so I think you just having to try to FOC focus on the fruits and vegetables um I think one thing that's really important I went to a supermarket shop um education once and they talked about eating around the outside perimeter of the supermarket so if you come into the supermarket if you think about it if you go around the outside it you get that's where all the fresh fruits and vegetables and meats and Breads and grains are so trying to do that would be a great thing next slide please so I told you to eat less meat um how do you do that one thing is you know have meat be not the main part of your meal but have it be a a part of it um so for when for instance having a salad and putting strips of lean meat on it um fixing pasta and having some lean meat in it um a lot of people will do stir fries and they'll have um the the lots of fruits and vegetables and a little bit of chicken or a little bit of lean meats in there but the main part of your meal is the fruits and vegetables try to eat Seafoods twice per week um fresh is best but I know fresh can be expensive and if you're like me from I am from Kansas City I'm landlocked um we don't get much good fresh seafood so Frozen can be okay canned is okay too such as tuna and salmon but you want to make sure sure it's packed in water and not oil um and then trying to cook some vegetarian meals more often I know some people especially here in the Midwest it's a meat and potatoes they when I tell them to try to do some more vegetarian meals they look at me like I'm crazy but trying to use more beans um nuts uh legumes um tofu is a good thing trying to use more of those things to to get more protein and they are often more cheaper also next slide um trying to eat lots of fruits and vegetables again fresh is best but Frozen is just as fine um you don't lose any kinds of of vitamin or minerals when they freeze them um if you're going to use canned which I know some of us have to especially fruit you can use it packed in water its own juice or if you're using canned vegetables make sure it's a lower sodium version um we talked about eating that variety of fruits and V vegetables trying to you know eat your Rainbow eat the rainbow of vegetables I know some people tell me they eat lots of fruits and vegetables but when I write them when I have them write them down look at them they're all orange are they're all green we get different vitamins and minerals in different um colors of fruits and vegetables so it's good to mix that up and it's best to not just have juices in your diet but try to have the the fruits and vegetables because you get a lot more nutrition and fiber from them we've got a picture here of an avocado avocados are a great food to add to your diet um they're a high fat but it's a fat that's very um very healthy very good for you eaten a lot in the Mediterranean um diet and so avocados can be a great source of nutrition next slide please um some people enjoy this when I tell them that enjoy red wine and in moderation if you think of that region they do drink wine um the thing that is important is moderation is the key and most of the time they drink it with a meal and they're drinking very slow and and drinking it with food um trying to encourage you to drink more water than soda and coffee um also cheese and yogurt are good I know we've had a lot of questions and a lot of people ask me what about Dairy what about milk um Dairy unfortunately does a lot of times increase inflammation um in a lot of people um yogurt is one of those that's more one of the dairies that doesn't do that quite as often and especially the Greek yogurt um and they do have like lower fat versions of the Greek yogurt um trying to eat more whole grain bread and brown rice products um I know Dr lner we mentioned um gluten-free and I know we've had some questions on that that we'll address later on but a whole grain bread and brown rice is a good product and try to limit the amount of sweets you eat this notice this doesn't say avoid um because anytime I tell somebody to try to avoid thing the first thing you want to eat is that food um in the Mediterranean area they use fruit edes desserts a lot more often one thing a lot of people usually like when I say it is dark chocolate is a good thing now the um thing to remember is is you want a minimum of 70% cocoa so you want that real jar chocolate and then nut are encouraged walnuts cashews almonds and then all the Butters and the milks that are made from those next slide please now I know a lot of us um eat three meals a day and I have a lot of people ask what about snacks what I have found especially with patients with any kind of muscle disease is your muscles need glucose they need fuel so it's not good for patients to go and skit meals or go all day don't eat much breakfast don't eat much lunch and eat a lot for dinner so I like to put up some snacks that could be a good idea that could still fit in a diet plan again it comes back to those nuts um a lot of times it's portion sizes and some of us grab too much nuts so one thing I like to do is um encourage people to have the little prepackaged bags of nuts because those are already um split up for you fruit baby carrots grap um grapes you'll see Greek yogurt again I mentioned that's a good thing and apple slices with almond butter um coming back to some of those nuts that are a little bit more um healthier for you next slide please I wanted to just touch back real quick um on the old ways site that I had mentioned earlier they have this great shopping list that is on there um it's a good reference when you're trying to plan meals and visits to the grocery store because I know a lot of times I will go to the grocery store and I'm like I do not know what to buy the shopping list does a good job about splitting the food into vegetables section fruit section beans and everything else and it just lists food that are healthy in that area and helps you know maybe what to buy when you do go to the grocery store next slide please so going back to it you know it's this great diet plan how do I follow it I hope I've gave you some topics some ideas that can help you with this one of the main thing I like to tell people though is moderation is the key anything that I've told you here too much of a good thing is too much if you eat too much fruits and vegetables it's too much so you really have to look at that moderation um monitoring portion sizes again it's coming back to looking at that quality of food and flavors more than the quantity and eating um you know too much um and I also like to talk about you know doing anything is better than nothing I have some people say well I can't do this I I can't do this whole diet it's it's too overwhelming pick something and start with it so maybe you start with using olive oil as as you know in your diet and then you start adding more fish into your diet to trying to ease into it to where it's not so overwhelming I want to thank all of you for letting me talk to today and um and be here and look forward to answering some questions and um hopefully getting to talk to you more in the future thank you thank you so much Susan um that was a wonderful presentation and uh we are so thankful that you were able to be here to join us um today uh we will now begin our question and answer session um and I am Trisha shivas I'm the director of development and strategic Partnerships here at the myositis Association and I'll be helping to facilitate the Q&A uh section as a reminder to everyone you can uh ask your questions today by typing your questions into the chat box which is at the bottom of your screen and we've been getting lots of wonderful questions throughout the entire section um I do see some people that have been raising their hands as a reminder we will not be able to facilitate questions through hand raising so if you do have any questions that you would like to ask please do type your question into to the chat box that is at the bottom of your screen and that will be how we are able to uh facilitate questions today um I will start with some of the questions that came in throughout the uh session and I will also remind everyone that TMA does have an autoimmune and nutrition infographic on our website at ww.my otis.gov um so Susan I'll start with you um one of the questions that we received was being on prednizone has increased my appetite significantly do you have any recommendations on how I might satiate my appetite and Renee please feel free to uh chime in as well yes that's a very good question and something that I get asked about a lot um it's a very hard thing I think one thing is you know if you're trying to do fruits and vegetables and and lean proteins proteins keep you full longer than um carbohydrates and so trying to keep that in your diet another thing I've tried to encourage people is to do other things besides eating such as chewing gum or um moving around and doing some other things to keep yourself um busy to help um with that appetite because it will make you want to to eat better and then trying to avoid a little bit of uh less uh salt because it does make you swell and the more salt we have in our diet the more that you swell so trying to do a lower sodium diet those are some things that I touch on Dr latner do you have any other suggestions um those are all really great ones I mean like I said myself I had to kind of pair things back because I have a terrible Sweet Tooth and I knew the prazone was going to make me crazy hungry um luckily for me I love vegetables and fruit and as as Susan mentioned um when you have the whole fruit or vegetable you're getting the fiber with it too and eating slowly I think really helps also filling up first with something like um broth or some green tea or something just kind of fills up your stomach so you're not as hungry and um uh just try to focus on the healthy stuff knowing that if you don't you may end up with more problems than you started with it's tough though I I was on it for a long time and it was a struggle but I um I was determined not to get fat great thank you both um we've been getting a lot of questions about um the gluten and um how you uh determine uh the use of gluten um so there's a lot of questions about do you have to go completely glutenfree um uh does gluten tend to impact inflammation um do you recommend a gluten-free diet um so uh Rene do you want to um respond and then of course Susan if you have any anything you would like to add we'd like to hear that as well sure I'll take that so this comes up um a lot and um as everyone listening probably is aware the whole you know gluten-free gluten inflammation thing has been a big deal for several years now there have been books written on it celebrities have gotten involved um the medical community has been trying to keep up with it and um many of us are aware of celiac disase disease which is an autoimmune disease it's not common at all uh it's a real disease and it can be very devastating if you're not picked up with it but that one has very specific diagnostic criteria um between blood work and more specifically getting a biopsy of the small intestine and that is a medical condition there's a a new term called non Celiac sorry yeah non Celiac gluten sensitivity which is what I think I had at least for a while it seems to have miraculously gotten better and unfortunately there is no test for that um over the many years as a physician I've seen people come in with um test results that they've gotten from some semi medic practitioners who have run blood work U many of them are called IGG tests which are frankly completely worthless they're not medically sound and they're usually not covered by insurance so those things are what people use to try to pick up food sensitivities and there's just no scientific backing to them at all um but to get it back to the gluten specifically there have been studies looking at a gluten-free diet in all forms of myositis meaning dermatomyositis polymyositis and inclusion body myositis and in some cases again there's not tons of data because we all are a fairly rare group anyway and no one's going to really there's no money in doing a a study like this so a lot of it's somewhat anecdotal but in the studies that have been done with small numbers of patients in every category many people did get better and then the question is well is it completely gluten-free can I have can I cheat once in a while and I don't think anybody knows the answer to that um if you want to really try going gluten-free then you probably would do best to follow the advice that people with celiac disease get and you could see a dietitian like Susan or there are places online that can give you some information but uh people with celiac disease have to be very strict about it with me I what I did just on a personal level is I went off of it and it my GI symptoms improved immeasurably it was just like night and day and then I got so tired of not having a brownie that at one point I just tried and nothing happened and so I could sneak it once in a while um it never made my myos sidus completely go away but again I have more skin problems than muscle so for those of you who are still struggling with muscle problems it's probably worthwhile to try it but you probably have to give it weeks if not months to see if it really made a difference I definitely agree with h Dr latner it's a very hard complex diet to follow and sometimes I get concerns that people they limit Foods too much um but what what I tend to encourage and see a lot of people do is cut out a lot of the processed white gluten sugars that are in there such as like white bread white pasta white um rice and stuff like that and I've seen that I think improve symptoms and not be quite as restrictive as following a true uh gluten-free diet great um we're getting a lot of questions about um as far as weight loss and challenges for weight loss and a lot of people asking about the ketogenic diet and whether that is um a good alternative to the autoimmune diet um uh and also the autoimmune protocol diet and how that um plays in with the Mediterranean diet can you um possibly Susan can you can you explain the differences between all these different diets and um Rene of course weigh in yes um the keto diet is the um I guess I would say a new fad um that is out there and really what a keto diet is is very very low um amounts of glucose high amounts of carbs and fat and you actually put your body into a keto acidosis where it uses fat um to make energy uh this is something that um I worry a lot about because it is a very restrictive diet um in this diet you're not really allowed to eat hardly any fruits and vegetables because there are carbs in fruits and vegetables and so it limits that a lot and we don't know a long time I mean a longterm how this is going to really it's not been studied long term so I don't know how that's going to affect on the cardiovascular I always say with um patients that have any kind of uh muscle disease I'd like you to have some carbohydrates because your muscles need those and so the keto diet um really it worries me um I do not know much about the what exactly that the autoinflammatory diet is that autoimmune protocol um autoimmune protocol diet it's a ke and I might I might have said that wrong I can kind of go up and and get it again sorry um uh do you know more about that one or um yeah I don't I'm not familiar with the distinguishing features I know that there's been a lot of stuff lately it's sort of another fad too about the lectin and um legumes and beans and nuts and stuff being horrible for you and that whole lectin thing is a little bit um out there too um and like with anything I mean all genetically we're all different and what's really frustrating for patients um and for those of us that take care of patients and our patients like myself being both there there really are no good tests for this and some of these fad diets like kind of the keto diet like Susan was explaining it's not it's not healthy long term for sure and um what's what's troubling for everybody is that there is no way anybody's going to do a study looking at thousands of people with any disease let alone something rare as ours so um for people that say that legumes and grains are horrible for you uh is probably not true but there are going to be people that don't respond to things as well as others and it I think um along the line of the questions I can see popping up too people were saying questions like well is there only is the only way to figure out what you're sensitive to is to just kind of try it alone and and kind of prepare with a fast before it or something and that seems very dramatic and strenuous but it might be the only way to tell like if you keep everything else the same and you start eating a lot of lentils and you feel badly then that might be something that doesn't agree with you but there's unfortunately no test for that back to you great thank you so much um uh so we've also um gotten quite a few questions about creatin I might be saying that wrong creatine is that how you said it right okay creatine um and um and it's recommendations with regard to folks who are living with IBM oh do you want me to take that one yes um and then of course and Susan please weigh in if you have thoughts on that sure um yeah well the first thing that a lot of people get confused about is that most of us with myositis we've had our uh CK or our CPK it's the same thing which is creatin creatinine kise um and that's a waste product that the kidney gets rid of um and that's not what we're talking about um this is creatine it's only um three syllables instead of four and it is a supplement and it actually was shown to be helpful uh unfortunately not for IBM but it was shown to be helpful for polymyositis and dermatomyositis once a loading dose of like eight grams was given for a while and then a a maintenance dose of three grams per day um and that was actually confirmed in studies done by ingred Berg who's a rheumatologist out of Sweden and found that it was helpful um I I personally tried it I was just super lazy and I just didn't stick with it so the only problem is that you have to you have to do it with exercise um very very rarely it can cause kidney problems but generally if someone has normal kidney function it shouldn't be an issue but the the the positive effects of a go away when you stop taking it so it's not like a cure and you have to combine it with exercise Susan anything you want to add um yes just uh reiterating what you said too we don't think that it necessarily hurts people but there hasn't been that good research to to show it and you do have to have that exercise and the muscle taking at the same time for it really to work the best we've we've also gotten a lot of uh questions about vitamins um and uh how vitamins how vitamin supplements being confusing um we've heard people say that they don't know which vitamins to take um uh is a multivitamin okay that sometimes there's news media around vitamin being okay one day and then uh not okay the next day um do you have any particular recommendations on which supplements are best for autoimmune disease Susan you want to take that um thank you I am a big proponent of a general multivitamin um I think that's a good thing for all of us I think vitamins are a very hard thing they're a hard thing for patients and they're a hard thing for us practitioners because there's not a um a lot of tried and true research out there and there's not a lot of regulations on vitamins so just because they say they are one thing it doesn't they're not FDA regulated does it exactly mean um that's what they are so I think you know when you're looking for recommendations and other important thing is to make sure you get quality sites um some medical Mayo um you know uh reputable uh universities with big hospitals um because if you get on there and you type Myositis and vitamins you could find um some recommendations by all kinds of people and some people might call themselves a nutritionist um some people might call themselves a homeopathic doctor and they might not have exactly the training maybe that Dr lner and I do so you really do have to be a little bit of uh careful where you get that um information and and I'll jump on that a little bit too and um I want to reiterate also what Susan said so I if if my understanding is that anybody I mean technically I'm a nutritionist because I just talked to you about nutrition but I have no formal training and um so you know like the trainer at the gym if they you know like to have their smoothies and tell people to take smoothies or or creatin powder or whatever or whey powder they're technically nutritionist but a registered dietician which is what Susan is they have immense training and and they really know what they're talking about um the other thing I I wanted to mention earlier and actually I have to think uh one of the attendees at the myositis conference many years ago who turned me on to this there's a website uh consumerlab.com consumerlab.com not Consumer Reports the consumer lab there's no s at the end.com and that is a really great website you have to pay a nominal fee once a year it's not that much and they review supplements um including dietary things uh not NE not specifically for myositis in fact there may be nothing about myositis on any of these reviews but they tend to do reviews of multiple brands of things and they also give fairly upto-date information if there's a study that's been done showing something works doesn't work side effects whatever uh interactions with medications you might be on and I use that not only for personal reasons but also for some of my patients um and uh as much as I obviously with very due respect to Susan the one thing I just wanted to mention about multivitamins is that um the majority of the multivitamin why they're so big generally and Susan please jump in if if I'm saying this incorrectly is that most of it's calcium and there have been some concerns over the last few years about too much calcium in the diet affecting cardiac health and part of that is is because um and again I'd love Susan to to uh after I'm done saying this uh comment on it too that because many of us whether we are having dairy or we just have a lot of vegetables that have calcium in them we're getting some calcium in our diet also and if we're overdoing that with a supplement on top of it um it might be leading to too much calcium which may not be a good idea particularly if you have kidney issues as well so that's one thing I would be careful about I think all of us know and Susan touched on this if you're on meth TR site which I was on for a long time you need to take folic acid so it doesn't mess up your blood counts and other things and finally like I mentioned earlier vitamin D especially for those of us in the colder parts of the year that never see any sun and for those of us with drom myositis who are not supposed to go in the sun the only way to really get our vitamin D is through supplementation and again um it doesn't cure the problem but it does help other things including I should have mentioned infection control people with low vitamin D levels tend to have higher uh levels of infection rates um but Susan did you want to mention anything about the calcium um no it is a very good thing to um remember because calcium levels yes they could be too high that's one reason that sometimes I like a general multivitamin because it provides 100% of what you need but it doesn't provide excess um and sometimes especially if you're eating a really good healthy well-balanced diet you probably are getting more um especially of vitamins and minerals calcium is one of those that's it's a little harder because we try to this diet sometimes discourages um Dairy except for the cheeses and stuff but you do have to watch that some of those vitamins can build up in your body and cause problems some of them if we do if we take in too much of them then we just excess excess goes out in our urine so it's you have to make sure that we're you know working with your doctor another thing is to make sure your doctor knows that you're on those vitamins and supplements um so if you go in I know sometimes they might say h i don't want to know anything about it I don't know but everybody should know what you're on because some vitamins and supplements can interfere with um medications that you're on great thank you um we also got a question um about uh you know with the Mediterranean diet there is a lot of both beans um which sometimes can cause um gastrointestinal issues and for some people who are on blood thinners can be a challenge do you have Susan do you have any thoughts on how people that have to balance these other challenges or health issues that they have to have um how do they um try to deal with um having or wanting to engage the Mediterranean diet and these other um health issues that they have um yeah that's that is a very good question um you know unfortunately a lot of us um don't have just maybe one disease we have other things um if we're on blood thinners it you do have to watch um V vitamin K foods and a lot of those vitamin K foods are found in some um vegetables um most of the time they're like your green leafy vegetables such as kale spinach broccoli stuff like that um the main thing with um vitamin K in food is you want a consistent level of food intake of vitamin K so you don't want to automatically one week eat tons of these vegetables and then the next week eat nothing because that will um affect your uh vitamin K and your your blood levels um so a lot of times we try to say if you're going to eat these vegetables consistently try to eat them um but as you can say you know there that that is quite a bit of vegetables to miss but there's still lots of other fruits and vegetables of the Mediterranean diet that you could have and avoid these kinds that have the vitamin k um in them uh another thing that comes up is um cardiovascular help this is a the Mediterranean diet is a great way to lose uh to help with a cardiovascular Health um and help those inflammation markers there okay great well we are coming up on the um the end of our um of our webinar uh we have lots of of questions and it does seem like this is a topic that will be something that we would want to revisit in future webinars and uh I just want to say thank you so much to all of our wonderful um people that engaged on this webinar who attended the webinar and to our wonderful speakers who were here and um I'm going to um go to next slides um we do have some other really wonderful things coming up um in partnership with the myositis associations and some of our other partners the FDA um the every life foundation and rdla um NIH and Nord um we have rare disease week coming up at the end of February so if you have any interest in participating in this um please please do keep this in mind um it is February 24th through the 29th and there's lots of really great events that are coming up some which if you cannot come to DC um you can participate um through live streaming in some of these and if you are able to come through to DC you can participate um and uh engage with us in that way and we hope you will be able to participate so keep an eye out and reach out to us on that um we also have a really exciting event we want to um have you all save the day May 8th um is the date coming up we will be having our first um ever inaugural virtual Summit um and this is an opportunity to uh engage in what is like a conference from your uh from your homes so you'll have eight educational presentations virtual exhibit booths virtual networking and educational resources for one day it's a one-day conference it's going to be um an opportunity to engage from your home um from the computer and it will be a really exciting opportunity um and we're going to give you more information um in about a week you'll hear more from this so keep an eye out we'll have more information on our website coming up uh we don't have information now but it will be coming up soon um and uh you know keep an eye out for this uh upcoming exciting opportunity to engage um for this one day opportunity to engage with us um and please please remember um if you have enjoyed this uh opportunity to engage in our post-webinar evaluation this is how we learned that you all wanted to hear um more about autoimmune disease and nutrition um and so we take uh your post evaluations very seriously as you can tell um so please fill out your post webinar evaluation that we will be sending out and then um you know we always post all of our recorded webinars onto our website under um our library and under webinars so you'll be able to find them there and if you are not currently a member of TMA please join up it is free to join and you'll be able to find out about additional educational uh information that we have like this uh particular educational seminar that you heard today and thank you again everyone for joining for
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