 Major sponsors for Ableton on Air include Green Mountain Support Services, empowering people with disabilities to live home in the community, Washington County Mental Health, where hope and support come together. Media sponsors for Ableton on Air include Park Chester Times, Muslim Community Report, WWW, this is the Bronx.info, Associated Press Media Editors, New York Power Online Newspaper, U.S. Press Corps, Domestic and International, Anchor FM and Spotify. Partners for Ableton on Air include the HOD of New York and New England where everyone belongs, the Orthodox Union, the Division for the Blind and Visionary Impair of Vermont, the Vermont Association for the Blind and Visionary Impair, Center for Vermont Habitat for Humanity and Montpelier Sustainable Coalition, Montefiore Medical Center of the Bronx, Rose of Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx. Ableton on Air has been seen in the following publications, Park Chester Times, WWW, this is the Bronx.com, New York Power Online Newspaper, Muslim Community Report, WWW.H.com and the Montpelier Bridge. Ableton on Air is part of the following organizations, the National Academy of Television, Arts and Sciences, Boston, New England Chapter and the Society of Professional Journalists. Welcome to this edition of Ableton on Air, the one and only program that focuses on the needs, concerns and achievements of the different labeled. I've always been your host, Lauren Seiler. Okay, and on this edition today we will focus on celiac disease, but before we do that we would like to thank our sponsors, Washington County Mental Health, Green Mountain Support Services and many others, including today's partner, the National Celiac Association. We would like to welcome the National Celiac Association to Ableton on Air. Thank you very much, Carla, for joining us. Thank you so much for having me. And her name is Carla Carter. What is your title? Sure. Yes, my title is the Director of Outreach and Programming with the National Celiac Association. Okay, so let's get started. Tell me a little about yourself and the organizations, the National Celiac Association. Yes, so personally, I've had celiac disease for over 22 years. I'm actually from Vermont and was diagnosed right in Berlin, Vermont when I was in college, which is aging me. So quickly after because it is a genetic disease, which I'll be going into a little later, my sister was diagnosed and six or so years later, my brother, my husband and I have two children and we are blessed to have them. Our 10 year old actually was diagnosed at age two. So we have there are four of us in the family. So that's a bit of my personal background with the disease. And the National Celiac Association exists basically to help people live every day with celiac disease and related conditions because there are a lot of related gluten sensitivities, including non celiac gluten sensitivity. So basically, it's our mission to help people be their best selves when from various age ranges from pediatrics to adults, seniors and everything in between. So okay, when you say celiac disease and other challenges within that, what exactly is celiac? Can you define celiac? And then let's go from there. Sure. Yeah. So celiac disease, as I mentioned, is genetic. It is an autoimmune condition. So similar to diabetes, rheumatoid arthritis, celiac disease, the body attacks itself when it doesn't recognize gluten as a protein in the body. And so it happens all in the lining of the small intestine when people eat gluten, the body for some reason says, I don't know what that is. It's a foreign invader. We need to get rid of it. And so what results is the damage to the lining of the small intestine. And from that point on, it affects the ability to absorb nutrients, which there in turn can affect the entire body. There are over 200 symptoms of celiac disease ranging from the typical gut related symptoms. I apologize for interrupting. Explain what you mean gut. Can you explain what you mean in the stomach area, correct? So your gut, the gastrointestinal tract is very long and it includes different parts. So the part that affects celiac disease is actually the small intestine. Okay. So that's where the damage occurs. And what really causes celiac disease? Like the main cause. Go ahead. So we're still learning about that. Basically, as I mentioned, the genes, there are two genes and about a third of the population has one of those genes, but a very small subset about 4% goes on to develop the disease. So science is still trying to figure out what turns on that gene. There are a lot of potential causes. I just got back from the international celiac disease symposium in Italy a couple of weeks ago, and there is a whole lot of talks about the potential causes. So there's a lot of research still going on about that. Arlene, did you want to ask any questions right now? Go ahead. Take your time. This is so important. I'm going to rephrase her question. Is it so important for someone with celiac disease to really eat gluten-free products or stay away from gluten? So the only treatment right now is a strict gluten-free diet. Okay. That's strict being the operative word because with celiac disease, it's basically the body kicks off an autoimmune response when it's down to about 10 milligrams of exposure to gluten, and that's an approximate amount. But if you take a piece of bread and you chop it up into 350 pieces, one of those pieces would be approximately about 10 milligrams, and that's the part where people generally speaking start that autoimmune response. So whether they feel it or not, it's happening in their body. So let's kind of backtrack and go because you want to talk about a lot of stuff, which is great. Processed foods, which is a problem. You see, here in Vermont, we tend to eat a lot of fresh foods, but for those who don't or can't afford fresh food, it is a problem, especially with probably a problem with gluten-free. So is it a problem with gluten-free, with the process market being like you said off-camera, you had told me that the FDA, in order for it to be gluten-free, the factory needs to do something to their process? How does that work? Am I saying it right? Am I saying it right? Go ahead. I'm sorry. Yeah. So just for the listeners, I want to back up just even more, if I could, just explain what gluten is. Yes, ma'am. I'm sorry. No, no, no. That's okay. These are great questions. And I just want to make sure everybody understands because gluten and gluten-free is like a huge hot button topic in today's times. But a lot of people don't understand what gluten actually is. So it's a protein that's found in wheat, barley, and rye. And a lot of other grains are contaminated or have cross-contact with those gluten-containing grains. So we have to be very careful with things like oats as well. So that when people ingest those proteins. So in addition, we also have to worry about things like cross-contact. So if we have to worry about different cross-contamination, correct? So cross-contamination, we bring up a great point. Larry or Lawrence? I'm sorry. Lawrence is fine. Lawrence is great. So cross-contamination actually refers to bacteria and cross-contact refers to food. So we use cross-contact for referencing when gluten has been in contact with gluten-free food. So we have to be careful of using separate cutting boards, separate utensils. So when you go to stir the pasta with regular pasta, you can't use the same spoon to stir gluten-free pasta. So those are the ways in which we have to live our lives every day, as well as what we put in our mouths with medications, chapstick. So anything that goes in the mouth, we have to make sure it's gluten-free. It's almost the same thing because I've done culinary. So basically if you have a cutting board, almost the same is you can't put raw product with cooked product on the same cutting board because then you're going to cross-contaminate that area. So yeah. Okay, so go ahead. Did you want to ask a question, Arlene? Is this disease what? I didn't get that. Can you refrain? Did you hear what she said? Is she asking if it's curable? Yeah. Is this disease curable? I'm sorry. Go ahead. Is this disease curable? Is ciliac curable in any way? At the time, no. The only treatment is the gluten-free diet. It doesn't work. It works for the majority of people, but it's also a really hard diet to understand. There is a lot more interest lately with pharmaceutical treatments. The goal is always a cure, but they're aiming a little lower to see if the more achievable goal could be getting away or treating episodes of cross-contact. So let's say going out to eat can be challenging for a lot of people. So how can it be challenging? Can you explain that? Yeah. So you're basically putting your life in somebody else's hands when they're going out back and preparing food for you. And it's not really, that may sound dramatic, but for some people, very small exposure can result in a hospitalization. So really? Yep. It depends on the body's system. Some people don't recognize. Some people are called asymptomatic, where they don't have gastrointestinal symptoms, but their body has been stricken with osteoporosis from malabsorption. So that's the ways in which it can affect certain people. However, so yeah, dining out at a restaurant, you have to be good about calling ahead to see if they can safely prepare gluten-free food, keep it separate from the gluten-containing food every step of the way. And that's throughout the dining experience in the back of the kitchen. So as you know, Lawrence working in the culinary department, there can be a lot that goes on back there. Yeah. Like for example, if someone is vegetarian, people get kind of scared, okay, is my food going to be cross contamination with meat. And that can be an issue too, which brings me to this important question. What are, or I know we're kind of jumping here, but what is the anxiety or emotional complications with celiac disease or people getting scared or afraid, if I may put it in that context as well? Yes. So this is twofold. First, talking about the physiological or biological changes that happen in someone with celiac disease as a result of the breakdown of the lining of their small intestine and the malnutrition that happens. Anxiety and depression are actually two symptoms of celiac disease. And that's because of the chemical changes that happen as a result of malnutrition. Explain what you mean by the chemical changes. So sometimes because of nutrient deficiencies. In my background as an occupational therapy, I'm a clinical educator. All of the resources that we have are medically vetted by our nutrition and dietary advisors. So anything that I'm explaining right now is based on those resources in my knowledge as a clinical educator. So basically sometimes because of vitamin and mineral deficiencies, it can affect brain chemistry and that can cause anxiety and depression. But then you factor in all the psychosocial and emotional things that people have to deal with walking out of their house and being able to eat safely. So that does result in feelings of isolation. Think of how much food is involved in society and our social interactions at holiday parties, work outings, travel, girl and boy scout meetings, right? I have another question talking about travel. The airline industry or the food industry within the airline. When people travel long distances, they get a meal. Can a person request gluten-free options or is there a problem with the airline industry or the travel industry in that respect? So actually we just got back from our long overseas trip to Italy and there's work that you have to do to make sure you get gluten-free food. It depends on the airline. So we were able to get a gluten-free meal and snack on the long flight over. You always have to be prepared and it's something we educate our community about because sometimes mix-ups happen. Your food might not be available. There might have been a mistake in preparing it. So you still have to pack that non-perishable food in your backpack, which is what we use as strategies. Yeah, just in case. Now, what is, okay, how does Celiac disease differ from a gluten-free or wheat allergy? Good question. Yeah. So Celiac disease affects one type and one part of the immune system. Gluten intolerance or an allergy affects a different part of the immune system where it's a more, with an allergy, it's a more immediate reaction and it affects that other part of the immune system. Celiac disease is the autoimmune condition that affects your IgA antibodies. Okay. Back up a little bit here. We're going to try to make it simpler for our viewers. What is IgA? No, it's fine. What is IgA antibodies within this? Sure. And honestly, if I could go back because a lot, one question that might be helpful to answer is how do you get diagnosed for Celiac disease? Because this is a really important topic. It's really important that people don't give up gluten or try the gluten-free diet without being ruled out for Celiac disease because it affects about 1% of the population and about 80% of those people don't know that they have it. So in what happens is you get tested, the first test for Celiac disease is for antibodies. Now, this is the branch of the immune system that I was talking about. It's IgA. It's just a type of antibody that's produced. Those are the fighter cells that say, oh, you shouldn't be there and the antibodies are produced. And that's what's measured in your blood. If those are positive, you really need to see a gastroenterologist to have a biopsy. So a tube would go down your throat. They would take a look with a camera and take little snippets of your small intestine and it's not a bad test. And that's how you, that's the gold standard to get diagnosed in the United States. And so that's again, but that's not going to be an accurate test. If you've already started the gluten-free diet, you really need to continue eating gluten the whole diagnostic process. So does that answer both questions? Yes, it does. Arlene, did you want to ask a question? Go ahead. Sure. Take your time. Okay. Can you repeat the question, please? What my wife's question is, what really causes the person to get the disease? They don't know. They have related it to a virus. There is one virus and they're looking into more that may change the immune system. They're theorizing, so here's, this is a new research on the microbiome. So the bacteria in your body can go out of whack and they're measuring a lot of bacteria in people to see if that's part of the equation, stress, they're measuring a whole lot of different indicators that might, it's like a light switch of what's going to kick on the gene to start being active because it can happen at any time in your life that the gene can be activated. Now talking about genes and vaccines, I know we didn't discuss this question, but since we're in the COVID situation and people are getting their vaccines, is gluten in any way because really people don't, I mean everybody got their vaccines, but is gluten in any way in vaccines and do people like vaccines or inoculations and do people have to be careful of that as well? Am I saying that right? Yeah that's actually a common question because we do have to be careful of what we put in our mouth for medications. Typically gluten is not in vaccines. Okay. What about aspirins or anything, Advils or any, any aspirins over the counter medications? Do you, do people have to be weary of looking at labels to see what is in, you know. Excellent question. So that's probably a more in-depth answer. Yes. In general, the FDA finds that it is rare for gluten to be in as an additive because they add things as binders and fillers. However, it is still important that it is investigated, especially if you're taking a lot of a particular medication or multiple times of day. Anything that you do put into your mouth, you need to be sure that it is gluten-free and that's, and you know, you asked about labeling earlier and there is an, a labeling rule for the term gluten-free under FDA. However, it doesn't apply to medications. Is there a reason for that? Is there a reason for that? Jurisdiction, I guess, but also it's a very big topic, food versus medications versus over the counter. There are a lot of different parties involved and it's a lot to get any sort of legislation through because it, it's a lot of work. Okay. Now, we're going to mention this question, but before we do that, there's a question about special needs of City Act. But before we do that, in talking about food pantries, okay, you wanted to educate why is it important for food pantries to have more gluten-free options and if they don't, how can we educate the public on that situation? This is really, really important. So statistically speaking, one in six people with celiac disease are experiencing food insecurity. So if, if you can imagine that you have this chronic lifelong condition that is quite serious and the only treatment is food-related and that treatment is not covered by insurance, it's not subsidized and it's about two times more expensive than all the rest of the food that everybody else eats and sometimes much more expensive than two times. So Explain a little bit more about that. Can you go in depth about that situation? Why food is more expensive? Yeah. Well, is gluten-free, let's see if I can, is gluten-free food more expensive than normal regular food? Yes, unfortunately. And so one study done, it was 183% more expensive. And so if that's your only treatment and you are already experiencing financial hardship, even having to skip meals and then all of a sudden you or your child or family member was diagnosed, how do you think you're going to afford gluten-free food now? So we tried to do a lot of basic education on getting naturally gluten-free foods, fruits, vegetables, undressed meats, unadorned meats, dairy, gluten-free nuts and seeds. So we have a cookbook to help people understand how to prepare food. And then like you've mentioned a couple times, processed gluten-free foods. Everybody deserves to have some gluten-free bread, cereal, send your kid to school with a peanut butter and jelly sandwich if you don't have a peanut allergy. So with food insecurity, these are the areas where people don't have access to gluten-free food. One of the biggest things that is gluten-free, my wife and I are Jewish and matzah is gluten-free a lot of times because they use, some Vryans use gluten-free flour because it doesn't rise during Passover. So that's a good way of thinking. Now culturally, if I'm saying this right, is there more gluten-free allergies with them? Because you have like in certain religions there are holla bread, pita bread in certain countries are, is Ciliac more prevalent in other countries than, am I saying it right? Yeah, yeah. So there have been full-long talks about the prevalence of Ciliac disease throughout the world. And there are definitely certain areas of the world where it's more prevalent. But in general, Ciliac disease doesn't discriminate very much. Yeah. But a lot of it does have to do with exposure to wheat and gluten in crops. So in India, there's a high Ciliac population. In Europe, the Scandinavian countries have a high population of Ciliac disease. So I would have to pull up direct references as to the percentages. But in general, that's... Okay. Did you want to ask him more questions, Arli? Yeah, this is my last question. Okay. Can you repeat that question, please? Is there a way... Let me rephrase my wife's question. Is there a way besides all the education that your organization provides, is there a way for people to get counseling or counseling resources to have people deal with Ciliac disease, if I'm saying that correctly? Yeah. So it is recommended that people see a registered dietitian who's knowledgeable in Ciliac disease. It's really, really important that follow-up care is given. So when someone's diagnosed, it's potential that they have other malnutrition-related illnesses or deficiencies. So they need blood work done. They need vitamin D levels, B12, iron, folate. They need all those levels monitored and with a registered dietitian so they can get back to a state of good health. You also need a bone density scan. So you really need good medical follow-up. And then peers, peer support is so important. And that's what we do at NCA because we have support groups, both virtually and in person. And it's really about getting through the day-to-day and learning the disease, learning the diet, and just... It's totally possible. And there's so many amazing ways to adapt and to live a healthy life. And we like to try and make sure people know that it's definitely possible. Okay. How is... The question we did not ask, two questions here we did not. What is Ciliac disease considered a special need or disability? Why or why not? Yes, it is considered a disability. It is covered under the Americans with Disability Act because it affects a major bodily function such as eating and it affects the functional system of the gastrointestinal tract. Now, what are the misconceptions around people with Ciliac disease? Oh, Lawrence, how much time do we have? 16 minutes. But if you want to go a couple of moments, go right ahead. No, that's okay. No, no, no, it's fine. We can make it longer if we need to. Okay. Some of the misconceptions is that it's not a serious disease. So because the treatment is a gluten-free diet, people don't think it's serious. And the fad diet of gluten-free has been beneficial and that it's gotten a lot more products to the market. But at the same time, there's this sense of joking. Take your time. Yeah, go ahead. In Hollywood, we're sometimes the butt of jokes. How so? How is that? And how does the media play on this disease? So there's been certain commercials in the past that have made fun of people who need to eat gluten-free. There was a recent TV show that aired that I'm not going to mention any networks or anything like that. But it was these two teenage girls who were walking around on this TV show and said, oh, why do we have to do what she wants to do just because she supposedly had celiac disease? Why do we always have to go to her restaurant? And it's a really serious disease. People get very, very ill and it affects your entire life. I know people who have been hospitalized on a regular basis. Now, speaking about restaurants, I know we didn't answer that. Well, you mentioned cooking in restaurants, right? But do restaurants or have restaurants in the past, present, or future, or going into the future, do they have gluten-free menus? Are they working on those things? Like, what if someone goes into a fast food restaurant? How does that deal with things? Everything is actually individualized as far as how restaurants are educated and how they choose to run their restaurant. There are certain restaurants that are very, very good at it and they cater to the highest need of people with celiac disease and a lot of allergies. And so they put very clear statements on their menu and they're willing to talk about what they do in the back end on the behind the scenes to make the meal safe. There are other restaurants who say they can offer gluten-free items, but it's not safe for people with celiac disease because they don't go to the measures they need to take for people with celiac disease to avoid cross contact and then others just don't offer. So at the end of the day, we do our best to help educate people how to be their own best advocates and know how to talk to people at restaurants and to get their needs met. And the last question, did you want to ask any more questions, Arlie? Okay, what are, what are some of the activities that you do to educate within your organization with celiac? And the last question is what are your future goals within your organization? We didn't mention your cookbook, but we can. We can do another question for that. So let's start with some of the, what are some of the activities that your agency is doing? Great, yeah, sure. So we host regular webinars with the celiac research center at Harvard Medical School. And they're all available for free on our website. You said Harvard Medical School? Yes. Okay. Yep. So we partner with the celiac research center at Harvard Medical Program to put on these webinars. And they're a great resource. They're a hub of celiac research. And again, all the webinars are recorded and they're available for free watching on our website, as well as when we host them live. We do national support group meetings the second Tuesday of every month, as well as in-person meetings around the nation hosted by our volunteers on the ground. We have amazing resources in our magazine, our free monthly newsletter, which is really great because there's recipes, but then there's also a recall page because you talked about labeling. And sometimes there are misbranded items that say gluten-free, but they have gluten-free on the back side in the ingredients. So that's why it's important to learn how to read labels. And what are your future goals within the organization? Yeah. So with our programs like Feeding Gluten-Free, which is our national response to food insecurity, the goals are to increase access to gluten-free food. We have expressed our opinions and tried to raise our voices for the White House strategy on hunger, nutrition, and health that was launched at the end of September. And so we hope to move the needle on improving access or decreasing the cost of gluten-free food. And as well as increasing education in the medical community to decrease the amount of time it takes for people to be diagnosed with celiac disease because there are so many potential symptoms or none at all. It's really hard for people to get diagnosed. It's on average, I think, eight to 10 years. It takes people to get diagnosed and dealing with that illness. Yeah, go ahead. We have other goals and a lot more to do every day. I wish we didn't have to. I wish there was a cure. While we still have some time left, we have about nine minutes left, let's talk about your cookbook that we did not really talk about. What type of recipes are in that cookbook for people to log in? Is it on your website or do people have to order it? How does that work? Yes, our cookbook is called Thrifty Gluten-Free. It is on our website available for purchase. And of course, all purchases go back to our programming. We focus on yummy and economically feasible gluten-free meals. The person who wrote it did a really great job. The pictures are taken with our cameras. We've made the meals, basically. We know that they're tasty and economical. Okay. Well, we would like to thank the National Celiac Association for joining us on this edition of Ableton on Air. We would like to thank Carla Carter for joining us, who's the outreach coordinator for the National Celiac Association. Thank you so much for joining us. For more information on the National Celiac Association, where can people go on the website? Yes, our website is nationalceliac.org, and it's national c-e-l-i-a-c.org. And you can follow us on social media with our handle is at nationalceliac. And there's a lot of information on our website. And I really appreciate your time, Lawrence, and Arlene and Ableton Air and the folks at Orca Media. Okay. So for more information on the National Celiac Association, their cookbook and any other activities that they have to make your life more easier with celiac disease, you can go to www.nationalceliacassociation.org. And just so people go ahead. It's nationalceliac.org. I'm sorry. National, for more information, you can go to www.nationalceliac.org. And for people who don't know, how do you spell celiac when they're on the website? C-e-l-i-a-c. Okay. So it's www.nationalceliac.org. C-e-l-i-a-c.org. Again, c-e-l-i-a-c.org. I'm Lawrence Seiler. Thank you to our sponsors, Washington County Mental Health, Green Mountain Support Services and our partner today, the National Celiac Association. I'm Lawrence Seiler. See you next time on the next edition of Ableton On Air. Major sponsors for Ableton On Air include Green Mountain Support Services, empowering people with disabilities to live home in the community. Washington County Mental Health, where hope and support come together. Media sponsors for Ableton On Air include Park Chester Times, Muslim Community Report, www, this is the Bronx.info, Associated Press Media Editors, New York Power Online Newspaper, U.S. Press Corps Domestic and International, Anchor FM, and Spotify. Partners for Ableton On Air include Yechad of New York and New England, where everyone belongs, the Orthodox Union, the Division for the Blind and Visually Impaired of Vermont, the Vermont Association for the Blind and Visually Impaired, Center Vermont Habitat for Humanity, and Montpelier Sustainable Coalition, Montefiore Medical Center of the Bronx, Rose of Kennedy Center of Bronx, New York, Albert Einstein College of Medicine of the Bronx. Ableton On Air has been seen in the following publications. Park Chester Times, www, this is the Bronx.com, New York Power Online Newspaper, Muslim Community Report, www.h.com, and the Montpelier Bridge. Ableton On Air is part of the following organizations, the National Academy of Television Arts and Sciences, Boston, New England Chapter, and the Society of Professional Journalists.