What is Autoimmunity
Welcome to my video series on autoimmune disease. I’m Robyn Puglia and this is the first video is an introduction to autoimmunity.
I am a nutritional therapist, but I am also an external consultant for Regenerus laboratories here in the UK and I’m employed by them to provide education and also technical support for the various different functional laboratories that they represent. So in this capacity I’m associated with Cyrex labs, doctor’s data, Dutch (which is comprehensive hormone testing) and several other labs including those around infectious agents and environmental toxins. However, I’ve got no financial interests in any of those companies. So you purchasing the test or using the test actually makes no difference to me but I am lucky to have access to a lot of information and a lot of training as a result of my affiliations with these companies, so I’m very grateful for that. It does form some of my work, but again, no financial interest in me and I just wanted to sort of say that up front.
My Background
So who am I? I’m obviously Robin Puglia and I’m a nutritional therapist and a certified functional medicine practitioner. I’m in full time clinical practice and as I already mentioned, I also do technical support for Regenerus labs and I mentor other nutritionists and also physicians here in the UK on all of the different aspects of functional medicine. I’m also a mom, I’ve got two little daughters who as I make this video are one and two and I have celiac disease. Which I’ve had some complications with over the years and has inevitably led me to focus on autoimmunity and complex cases and unexplained illness in my own practice, which I find very interesting and very fulfilling. So that’s essentially the light that I’m swimming in on a daily basis and it’s pretty exciting to me what’s happening in our education and in the medical literature that there’s a lot more awareness. There’s a lot of discussion around autoimmunity happening at the moment. It’s also astonishing when you start to read the medical literature, what information has been available for 15 years, 10 years, 20 years that isn’t really commonly known and commonly understood, are practiced in clinical practice. So for those of you in the general public who have been having problems feeling understood or feeling recognized by your physicians, I want you to know that that information is out there, but it’s not really commonly known.
What is Autoimmunity
So I’m going to start with a couple of definitions of terms. So number one, what is autoimmunity? So autoimmunity, in a nutshell is a couple of things. Number one, the immune system, and it can be the specific or the nonspecific immune system loses tolerance to a protein in our body. As a result of this loss of tolerance to self, the immune system initiates an inflammatory reaction that is directed at that protein in our body. This inflammatory reaction, an inflammatory attack, results in tissue or organ damage. That eventually means that that tissue or organ has symptoms and doesn’t work in that capacity or at all anymore. Now when that’s bad enough, it’s considered a disease and that it’s classified as an autoimmune disease. So autoimmunity is loss of tolerance to self proteins that causes an inflammatory reaction that can end up in a disease state.
Now we use the term antibody and I’m not sure that we necessarily really understand what an antibody is. An antibody is a part of the process that I’ve just described. They are basically a protein that the immune system uses as a flag. The immune system attaches the flag to another protein to signal to the immune system, that there’s a problem here, this is the guy you’re looking for. When the immune system sees that flag and gets that message then this triggers the inflammatory response, the attack that is targeted at tissue that’s got the antibodies stuck in it. So here you can see a couple of images, you know this one’s obviously a cartoon this is a b cell shooting the antibodies out into the system. Here we have a tissue that’s got multiple antibodies attached to it. So this protein here, this tissue here has been flagged by the immune system using the antibodies to direct the immune attack at this target. It’s interesting and important to understand that what you see here the protein and antibody compound, these antibodies, they are attached to the protein. So this is a new molecule and it’s called an immune complex where you’ve got the antigen and the antibody attached together.
So there are more than 80 distinct autoimmune diseases and it’s estimated that 5-8% of the population have a diagnosed autoimmune disease. I think that it’s important to understand that a lot of people have autoimmunity and a lot of people have autoimmune disease that isn’t yet diagnosed. So within the Celiac community for example, it’s considered that about one in every six to seven people who have celiac disease have a diagnosis of celiac disease. That’s people who have end stage, who are actually walking around in the community with end stage celiac disease who haven’t had it recognized yet. So autoimmunity is under diagnosed a lot of the time, although with the discussion and with more awareness around autoimmune disease and the way that they can present, I feel like that is changing, but at this moment in time, it’s still under diagnosed. So early stage autoimmune symptoms and immune dysregulation are present in up to 20 percent of the population.
Types of Autoimmune Diseases
This makes autoimmune disease as prevalent as things like cardiovascular disease presentations like hypertension or high blood pressure and metabolic syndrome, which includes things like diabetes and pre-diabetes. So there’s a list on autoimmuneregistry.org which is a not for profit in the USA, that includes all of the autoimmune diseases that are confirmed. But it also includes any disease that has no known cause and you’re suspected of being autoimmune in at least three separate papers in Pub Med and that number so the total number of a confirmed and suspected is actually 154. So it is probably a much bigger problem than just that 80 distinct autoimmune diseases. We also understand now that there is an element of autoimmunity in some diseases that are not considered autoimmune diseases such as cardiovascular disease, atherosclerosis can be autoimmune in nature, but cardiovascular disease is not considered an autoimmune disease.
Symptoms of Autoimmune Disease
There are some shades of gray in what is autoimmunity and how does that actually present at any given person. Since so many of these disorders share similar symptoms, it can be really difficult for the healthcare provider to actually pinpoint a specific disease. I’ve created a list here, this is not of course all 80 or all 154, but these are some of the more common ones that I personally see in clinical practice or that I think are probably the most common ones. Initial symptoms of autoimmune disease usually include fatigue. I think almost everybody that I’ve ever seen that has any form of autoimmunity has fatigue as well part of the presentation, but also aches and pains in tendons, joints, muscles, headaches, inflammation in pretty much any area of the body. So for example, inflammatory skin conditions can be a sign or symptom and low fever or feelings of malaise. So distinctly more women than men are affected by autoimmune diseases so that the exception to that is actually type 1 diabetes and inflammatory bowel disease where they tend to be equal or slightly more male in presentation. Nobody is really sure 100 percent sure why that is. It’s thought that estrogen plays a very strong role in, in fact, we know a lot, a lot about the role that estrogen plays in immune system dysregulation and inflammation and creating a stronger predisposition towards auto immunity. Of course women have much higher levels of estrogen than men do. But it’s also conceded as part of this question that women are exposed to many, many more chemicals on a daily basis than men are just by our skincare, our haircare, the makeup that we put on, the beauty salons that we visit, the beauty treatments that we have and also cleaning products which we are even in this day and age in general in the population, more exposed to than men are. I’m not going to have this devolving commentary on that, but it’s at the moment still effect. So here in the UK autoimmune disease has been in the top 10 leading causes of death at all age groups under 75. It’s also thought that this is underestimated.
Autoimmunity and Quality of Life
Now, those are alarming facts, you know, leading cause of death, top 10 leading causes of death. But autoimmune disease isn’t really about death, it’s about suffering, it’s about loss of quality of life. You know, if you’ve got an autoimmune disease or somebody in your family that you love has an autoimmune disease, then you may have already been told that your future consists of many years of progressively worsening symptoms accompanied by increasing strengths of some very serious medications, including steroids and other immune suppressants that themselves have horrible side effects. So what we’re really talking about is you missing out on your life. We’re talking about time missed with family and friends, were talking about days spent alone or in bed, in pain, maybe you’re afraid for your future. You know, we’re talking about you or your loved one, not fulfilling hopes and dreams for your life or for yourself. We’re talking about disability. So while the facts about autoimmunity and death are, of course shocking and important, really the scope of what we’re talking about is much bigger than that. Again you know that suffering and that pain is something that I think is equally as serious as death.
So who are you? You are a community of people who are really, lawfully underserved by our current medical system. Being diagnosed with an autoimmune disease in our current system goes something like this. You present with symptoms that are bad enough that they are causing you distress or that they are leading you to feel like something’s seriously wrong and you contact your doctor, your primary care physician. You may at that point have some tests done or you may have the symptoms dismissed as just being stress or just being normal. You may actually have that happen repeatedly for a period of time until the symptoms that you have such as joint pain or gastrointestinal distress get bad enough to prevent normal function. Your test results may be actually coming back normal or within normal range. And you may end up with a diagnosis such as IBS or fibromyalgia or some other syndrome that goes a certain way to explaining the constellation of symptoms that you might be presented with.
Now this can go on for years, five years, ten years you might see multiple doctors and have multiple medical appointments during that time. Eventually when things get bad enough and your tissue or organ system is damaged to the point where, it is obviously diseased, then you’re going to get a diagnosis. When you get a diagnosis at that point you’re told that there’s nothing to do except to learn to live with it and that you’ll be given drugs to help cope with the symptoms, and of course, that diet and lifestyle have absolutely nothing to do with either the development of your illness, managing it or helping to improve your situation.
So what do you need?
You know, this is what I really believe needs to change in the conversations that we’re having around autoimmune disease. You need somebody who is going to listen to you, you need a healthcare provider that is going to be empathetic towards you and who will partner with you in your care, who will listen to what you have to say about your experiences and your symptoms and what you think makes it worse and what you think makes it better. You actually need to be educated and you need to be empowered about your health and about your body because there are many variables that you can change. In changing those variables you will be able to support your underlying health and improve your quality of life. I think it is a fundamental truth that diet is a prominent part of autoimmune disease management and in some cases it’s a part of autoimmune disease of development as well. But once you already have that autoimmune disease, then understanding how diet and lifestyle can totally change the trajectory of your life with regards to improving your quality of life is a really important thing and a really empowering thing because it gives you something that you can do in your daily life every day that can help you to feel better.
The Role of Functional Medicine
So I think that functional medicine is perfectly placed to provide you with the support that you need if you are being failed by a conventional system. I would like to also say at this point that I’m not criticizing our conventional system. I think that our medical system is actually brilliant, I think that it is state of the art and I think that it saves lives and it’s really, really important for chronic care. The conventional model isn’t working for people with autoimmune disease. If you have an autoimmune disease I think you’ll probably appreciate that that’s true. And that’s essentially probably why you’re here watching this video in the first place. So if you want to find a functional medicine practitioner I have listed on this slide the functional medicine website where you can go to find a practitioner in your area.
So that brings me to the end of introduction to autoimmune disease. The next video in this series is actually on auto immunity and the immune system, so stay tuned for part two, because I’m going to be diving into what actually happens in the immune system that leads you to developing autoimmune disease in the first place. When we understand what’s happening we have a much better ability to be able to make interventions that help to affect and change the immune system hopefully for the better. I hope you’ve enjoyed this video and please do subscribe to my youtube channel and click the link for part two.
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Robyn Puglia
Robyn is a Clinical Nutritionist with a specialised interest in the Functional Medicine approach to health. Robyn is very involved with the field of Coeliac Disease, Gluten-Reactive Disorders and Autoimmune Disease. Her passion for the healing power of food, has led her to work with complex cases, involving multiple diagnoses, and chronic health issues such as ME, auto-immune diseases and fibromyalgia. She also has a passion for working with the growing tide of chronic, lifestyle mediated illness; diabetes, cardiovascular disease and obesity, and runs a lifestyle intervention clinic for these issues. Robyn works with patients to nutritionally support their bodies, so that they can heal. She has successfully helped many people around the world improve their health and increase their quality of life. Robyn sees clients in London, Tokyo and New York, and has a virtual practice that allows her to work with people all over the world.
