Celiac Disease

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    Community Voices

    Scooter or Electric Wheelchair?

    <p>Scooter or Electric Wheelchair?</p>
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    <p>Organ donation, body donation or neither?</p>
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    If you could choose where and how you pass,
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    <p>If you could choose where and how you pass,<br>where would it be and how?</p>
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    If you could choose where and how you pass where would it be and how?

    <p>If you could choose where and how you pass where would it be and how?</p>
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    A Great Day!

    <p>A Great Day!</p>
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    Appreciation for Every Moment

    <p>Appreciation for Every Moment</p>
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    Community Voices

    Nervous about testing

    <p>Nervous about testing</p>
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    Eleni Stephanides

    Celiac Disease and Adaptive Stress During the COVID-19 Pandemic

    I once read an article that said the average person with celiac disease is taking their condition too seriously. I remember he proudly admitted to plucking breadcrumbs off of his salad and said that doing this is “totally fine” if you have celiac disease. He also wrote that although gluten may not be killing us, stress most certainly is. In response, other commenters said that misinformation like this harms our community — and in my opinion, they’re not wrong. Reading his words also reminded me of the people who expressed similar sentiments toward COVID-19 throughout the pandemic. My own housemates accused me of overreacting when I protested their coming home knowingly infected with the then-poorly-understood virus. As a person with celiac disease, I’ve seen many controversial blanket statements about my condition, like “It’s OK to eat salad that has touched gluteny croutons” without anyone specifying that it was just their individual experience. Some people believe that if they experience no obvious symptoms after eating a certain way, then all other Celiacs would be fine to do it too! Words like “hysteria” and “shrieking” were used to describe the commenters who became rightfully upset in response to this. A commenter — who claimed to revere logic and the scientific method — suggested that severe stress could create symptoms similar to celiac disease. “So maybe you weren’t cross-contaminated — maybe stress was the cause of your symptoms, not gluten!” he condescendingly proposed. This opens the door to a conversation about the difference between adaptive and maladaptive stress. We need some level of adaptive stress in order to survive. Our ancestors heeded stress as a signal to evade getting eaten by predators. By alerting them to nearby threats, that stress kept them alive. Stress over a threat that is real and proven — and where there are actual steps you can take in response to it — is always adaptive to me. Stress about things over which you have no control, on the other hand, is generally considered less constructive. If this stress is preventing you from functioning and focusing on the tasks of daily life, or if it’s interfering with your sleep, then you might be able to call this “maladaptive.” Take the example of COVID-19. It’s a real threat. Millions have died from the illness. Millions more have experienced lasting damage from infection. Eight times more people passed away due to COVID-19 last year than from the flu. Gluten is a real threat to those with celiac disease. Ingestion of as little as 1/1,000th of a crumb can trigger organ damage and an autoimmune response. This is backed by science. Stress over COVID-19 led people to take steps to avoid the threat. These steps included social distancing, wearing masks, and avoiding large gatherings. Many who caught COVID-19 in the early stages were people who did not take these steps — either because they couldn’t (due to income inequality and the need to keep their jobs as essential workers to support their families) or because they chose to disregard social distancing and quarantine measures. The people in this second group perhaps believed that the threat was not real — or that people were blowing it out of proportion. Stress over gluten can lead people to avoid dining out in unsafe environments. It leads them to wash their dishes thoroughly, read labels carefully, and communicate with eating establishments in advance. People who do not take these steps are much likelier to ingest gluten and have small intestinal damage. Of course, I would like to believe people who say I should “not worry” about my gluten intake. Of course, I want my life to be easier. Of course, I wish I didn’t have to stress about minuscule amounts of gluten. It’s just that I don’t believe what these people are peddling. Life as a person with a chronic illness — or life as a person — will never be easy or completely free from stress. And you know what? I’m OK with that. I don’t see my worries as unhealthy — but instead as adaptive stress. The stress I feel doesn’t degrade or detract from my quality of life — in fact, I know it’s improving my life by protecting me from harm. Sure, I would gladly spend those extra minutes I spend Googling, reading labels, and calling restaurants on something else. I can’t tell you how many cumulative hours I’ve spent on researching whether a given food is safe for me to eat. But this is my reality now, and even though I spend more time on these things than I did before, I also spend plenty of time on things I enjoy. My stress about gluten does not disrupt my sleep (unless you count the occasional bad dreams I have where I’m enjoying pizza and saying “fuck it” to my celiac). It does not consume my life. I still exercise every day, read nightly, write prodigiously, and plan fun activities with friends. My days are balanced. Celiac disease might take a significant portion of my brain space, but it by no means takes over entirely. Whether your adaptive stress is over celiac disease, COVID-19, or avoiding people or environments that spark discomfort in you — the amount of stress you face is key. You get to decide what amount of stress is healthy — not anyone else.

    Community Voices

    It’s Okay To Be Angry With The World

    I’ve grown up always knowing that life wasn’t meant to be fair. That your place in life is largely due to outside influences beyond your control. Your abilities in life and what you are able to achieve are in part due to where your family grew up and their financial status in society.

    Does that give me peace in life, absolutely not. I want the ability to control my life. To determine my goals and the steps necessary to make them a reality. I want to be known as indomitable and that I didn’t let obstacles stand in my way.. that all changed when I was diagnosed with not one or two, but four rare diseases.

    I have survived a horrible childhood full of abuse, torture, and neglect. I should have been a foster kid, but social services didn’t find me. But at the first opportunity, I was 13 years old, I also had my abuser arrested and testified to put him in prison. I deal with PTSD on the daily.
    But I survived.

    Two days after my 19th birthday, I was unceremoniously kicked out of my house by my mother. During my senior year I had become very sick and missed a month of school. Because of this I wasn’t able to graduate with the rest of my class. Without a GED or high school diploma I worked whatever job I could and slept on the streets for four years. Eventually I saved enough and earned my GED and enrolled myself into community college. Through grace I avoided heavy drug use and chemical dependency while I watched it destroy lives and families around me. And I survived.

    In my mid 20’s I developed symptoms of a rare disease that almost killed me. Profound weight loss and massive hair loss was caused by malnutrition. Everything that I ate went right through me. I was gas lighted at ER roooms because they didn’t believe my symptoms and accused me of being anorexic. Luckily I was diagnosed with Celiac disease in time to be saved. Another month and the doctors weren’t sure I would be alive. But I survived.

    I went on to have a long career as a merchant mariner in the oilfield as an offshore mechanic. Heavily dominated by men, I often sought refuge in tools because they didn’t talk back. Being introverted, I was unable to express my feelings and frustrations. I often lost myself in jobs and was praised for my mechanical ability, but also didn’t make friends. My lack of communication skills meant it was hard to develope leadership skills, make friends, work as a team leader, or gain trust from my group. Because I was different, I was often targeted. I expressed outrage at the injustices I experienced as often the only woman onboard. In response my reports was ignored and I became blackballed in my industry. I thought sacrificing my personal life and devoting my life to my work would give me the acceptance and life I’ve always wanted with my crew. I was very wrong. In 2015 when the oil market crashed everyone lost their jobs. Because I had earned a degree despite the Celiac Disease, I directed into a new career path, as a defense contractor for the military. I survived.

    I did odd jobs until landing that job as a defense contractor. I worked land construction and was set on fire by my boss, broke my toe, and almost had my finger cut off due to the negligence of others on the job site. Because I was a woman I was blamed, dismissed, and let go.

    As a defense contractor I believed I had finally made it. I finally had health insurance and could finally be tested for the random symptoms and abilities I had. I was diagnosed immediately with hyper mobile Ehlers Danlos Syndrome, Postural Orthostatic Syndrome, and Mast Cell Activation Syndrome. I could no longer work physically demanding jobs as it was destroying my body. I could no longer turn a wrench because my wrists would dislocate and I didn’t have the hand strength anymore. How did I manage my health conditions with a new job and a new career? I worked as long as I could and did what I could until discrimination and lack of work ability forced me out. Again, I gave everything I had, my brain was there but my body was not. I felt trapped in a body that betrayed me. But using that health insurance allowed me to be diagnosed with Autism and ADHD. This explained why I could never verbalize my frustrations and affected my communication skills with others. And I survived.

    Yet the random symptoms continued. My ability to walk, talk, remember, and participate in work meetings was compromised. The constant fatigue, lack of strength, numbing, and stabbing pains told me that something else lurked beneath the surface. Six months ago my rheumatologist told me I had multiple sclerosis. Long wait lists, incompetent doctors, and ignorant people in support groups led to a delayed diagnosis. So what now? I know I will survive. But there is no road map for my journey with rare disease.

    I’ve lived my whole life thinking that if I could just overcome this one obstacle everything would be alright. That people would see my worth and give me my place in the world. It’s been a hard road only to realize that everything I’ve worked for can be taken away with a diagnosis.

    It’s maddening to know society writes me off and expects me to live in poverty because of a diagnosis. It’s okay to be furious with the world. It’s perfectly normal to by angry with a body that has betrayed me. It’s okay to feel misrepresented by doctors and patient advocates who don’t understand your struggles. It’s normal to be angry at friends, relationships, and family members who left in your struggle with health because they had a life to live, and it doesn’t include you. It’s eye opening and raw to become aware that society labels you as a second class citizen and doesn’t provide the necessary resources to survive. There’s a reason why people who live with disabilities have a 200-1000% higher risk of severe depression and suicide. That over 90% of people who live with disabilities live in poverty and report a lower quality of life.

    It’s perfectly okay to be filled with righteous rage at your condition, how you are treated, your perceived health outcome, and your lowered quality of life. It’s okay to voice your anger and ask for help. It’s okay to share your story of choosing rent or medications. Health insurance or utilities. It’s okay to advocate for change to help yourself and others. It’s okay to scream from the mountain tops because life isn’t fair. That health insurance companies can choose what medications and treatment is covered and what shitty doctors are considered in network. It’s okay to have enough anger in you to power the sun.. so then use it to change your circumstance. Use it to advocate for others. Use it to make a difference in this world.

    Suffering and indignities are unjust and unfairly target the disabled and rare disease patients just like you and me. Discrimination of the disabled affects our out of pocket costs for health care, where we can live, who our medical team is, and our quality of life. So get angry and let your voice be heard.

    13 people are talking about this