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Living with Autoimmune Diseases

“Perseverance is not a long race; it is many short races one after the other.” – Walter Elliot

I would say my autoimmune diseases are mild compared to some people’s flare ups. My health could be worse, but that does not make it less miserable.

At 25 I started noticing significant differences in my health. First, I chalked it up to stress and exhaustion with being in a graduate program. However, as I began yoga again and focused on relieving anxiety and getting more sleep, the symptoms were not going away. Every time I ate, I felt sick to my stomach to the point of not being able to do anything productive. I had frequent migraines, I began plucking my eyelashes because I had eye styes that were painful. And I was exhausted and experiencing brain fog.

Amy Myers, MD has concluded that woman are more likely to develop autoimmune diseases and generally around child bearing years, which at 25 definitely fed into this evidence. Also, at 25 your cells are no longer replicated as fast as they once were and in fact starting to die more easily. The body begins to lose its defense against certain diseases.

A doctor prescribed me anti-anxiety drugs because they believed my eyelash plucking was a symptom of stress. An allergist suggested going off gluten because I tested positive for the celiac gene. And I stuck with yoga to help with stress and sleep.

Going off gluten helped for about four months but my fatigue became worse. I spoke with a GI doctor and they suggested the low Fodmap diet since I was diagnosed with IBS as a child (when not much information was known on how to live better with the syndrome). Low Fodmap did improve my energy levels, but not my bloating and plateaued weight. No matter how active I was I was not losing weight or shrinking around the middle. I maintained that weight for years on low Fodmap. I eventually became resigned that my body type designated that weight for me.

I thought I was doing well for years. My irritability had disappeared. My poor husband had had to put up with a crabby-patty up until my diet change. If you have any allergy you know that when you have a reaction you become irritable and grumpy. Times that by 10 due to the fact that I was essentially having a reaction everyday because there was a build up of inflammatory foods in my body. Once I cleansed my diet, detoxed from the inflammation, then my personality changed. I was happier, lighter, as if a weight had been lifted. I became more positive and more productive.

Amy Myers, MD and many other doctors and researchers have finally come out and said that our stomach is integral to our immune system. Our body’s systems are not separated, they work together to keep our body functioning at its healthiest. We disrupt this natural order with the substances we put in our body. As with narcotics affecting the brain and nervous system, foods, can harm our digestive system. When we experience inflammation in the digestive system we disrupt our ability to absorb certain nutrients. Without those nutrients we begin to experience pain, fatigue, bloating, hormonal imbalances, sickness, and so many more symptoms.

I was in a good space after I graduated with my Master’s, so I thought. I would still experience the occasional bloating with certain foods (specifically when I ate out), or when I drank, but it was manageable.

Things took a downturn when we moved to Scotland for my PhD. I went into a bout of depression. I barely left the bed, feeling tired and my body ached. Once I forced myself to get out of bed and outside I felt better, but not 100%. Something was tearing my body apart. Autoimmune disease means your body is attacking itself, a terrible and frightening feeling.

Don’t be surprised that if you know you have an autoimmune disease doctors tell you there is nothing you can do except medicate to relieve or suppress the symptoms. Does that sound like a good thing? Wouldn’t you rather find an answer so your body can start healing itself and achieving balance? Every time I went to the doctor they simply said, “yeah it sounds like your celiac disease.” They were not listening to the fact that this symptom was new. I have battled with celiac and controlled it with diet. Whatever was causing my fresh pain, the soreness in my right side, the swelling in my abdomen, the continuous heartburn, the fatigue, skin rashes, the disappointment, and fear was new. There was something else wrong with me. And surprise surprise I finally found a functional medicine doctor that found I had Salmonella. I lived with the bacteria festering in my belly for months! European countries have different regulations for food production.

This solved one problem, treating the Salmonella, but something had changed in my system. I was altered due to mold exposure (which triggered mast cell activation), and the bacteria. The IBS I had been diagnosed with was more severe, it was IBD. When I went to the bathroom, it was so painful in my large intestines that I was crumpling over in pain, crying out. I thought I potentially had cancer, that I was slowly dying. I didn’t know how I was going to keep living on this path. I was unhappy, scared, and anxious. All of which, put strain on my social life and my marriage.

Amy Myers, MD said it best, “one of the worst things about an autoimmune condition is feeling as if some alien presence has taken over your body. Out of nowhere, you are occupied by a mysterious force that makes you tremble, ache, panic, weaken, turn red, fail to sleep, and fail to focus, not to mention overwhelm you with fatigue, brain fog, and muscle weakness” (Myers 45).

The problem with doctors is they don’t look at the whole picture, they want to medicate and cover up the problem rather than fixing the source. They also believe that there is no way to fix autoimmune diseases, that once you are diagnosed it is a life sentence for you to be miserable. They are wrong!!!!!

I cannot express this enough. I am a direct example that there is hope for people with have autoimmune diseases. When you have one you generally develop another autoimmune disease. I know I have Celiac, IBD, Sjögrens, and Raynauds. Every day I learn something new about autoimmune diseases that brings me one step closer to finding my answer. I am not 100%, but I would say I am at least 90% on most days. What do I owe this improvement? Diet and lifestyle changes.

Dedicating myself to yoga as a whole gave me a new outlook on life. I am more positive and I have the tools to deal with my anxiety. Yes, yoga has helped me immensely physically, keeping me toned, flexible, and a master with my breath.

Diet, though, changed my life. When I switched to AIP, the Autoimmune Protocol, which is specifically designed for those with autoimmune diseases, I saw a difference within the first month. I lost ten pounds (all inflammation weight), I didn’t have pain every time I went to the bathroom, my headaches were fewer, my joints didn’t ache, and I wasn’t having chest pain due to acid reflux. After a year on the diet and with more research I realized there was even more I should be cutting out of my diet, which I did and lost another 5 pounds, and it became easier to get out of bed early in the morning.

When you go on a strict elimination diet like AIP, the body becomes more sensitive and will react more readily to the foods that are inflammatory to your system. This is your body’s way to communicate that you should no longer eat that food.

But why is diet such a factor in autoimmunity? 25% of the likelihood we will develop an autoimmune disease is genetic. Meaning your genes predispose you to autoimmune diseases. The other 75% is environmental (Myers 34). This includes everything you come in contact with on a daily basis. If you are exposed to heavy metals or black mold you will probably trigger mast cell activation which only ignites autoimmune symptoms. Food is another huge environmental trigger. With continuous inflammation, your body attacks itself to the point where you lose important lining in your gut that protects you against bacteria leaching into your blood stream, or the overgrowth of bad bacteria. All of which causes heartburn, body aches, joint pain, and fatigue.

Therefore, our first step in healing ourselves and reversing or putting your autoimmune disease in remission is to heal our gut. This could mean first identifying if you suffer from Leaky Gut or SIBO, both of which, allow bacteria to wreak havoc on your body. Identify what nutrients you are miss, what supplements you need to take to build back up your immunity and your belly’s natural defenses.

It is an ongoing battle for me, but I would not be writing this if I didn’t think I would succeed. I am in the end zone, running toward the touch down. I believe anyone with the right motivation and the will power to change their life for the better can turn around their autoimmune disease(s). There are numerous stories about people that have debilitating diseases, like MS, that have prolonged their life, move easier, and live a relatively pain free life with just changing their diet.

I am to the point in my journey where when I experience a flare I can identify what it is I came in contact with that would cause the inflammation. Each day I learn something new is a step toward finding my healthiest and best life. My outlook is positive and I know I can beat the pain and fear.

Change will not happen overnight. You must fight many battles and deal with setbacks. The important thing is to keep moving forward and to not let yourself be beaten down by your failures. Failing is not the end, it is a lesson in what to do next time.

Be strong and fight.

“Perseverance is stubbornness with a purpose.” – Josh Shipp

Myers, Amy, MD. The Autoimmune Solution: Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases. Harper Collins Publishers. New York City, NY. 2015.

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