Celiac Disease

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    Grateful to be able to cross off my bucket list

    I thought I would just share some pictures, I am so grateful for all of the people, animals and things that I have in my life! I have been able to cross off so many things on my bucket list. I have been to the science center, the Philharmonic, the opera… baked/cooked yummy food, spent time with my people. On Sunday I have my celebration of love with my amazing partner. My life may be cut too short, but it is full of so much joy that I feel like I have lived a lifetime already.

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #MentalHealth #Depression
    #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

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    Why I know I am Dying

    People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.

    Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.

    Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.

    Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.

    Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.

    Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).

    My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.

    Chris

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsPhenomenon #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

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    The realities of Dying

    I post a lot about the positives and those are very important, but I think it is also valuable for me to share some of the struggles as well, as that is a part of this journey. I have carefully cut out all supplements and 3 prescription medications, working towards a medication re-set. These pictures show how my body is breaking down; my skin tears and my vessels in my eyes burst, I just have to brush my skin against something for bruising/petechiae or cuts to occur and pain levels are very high. I have doubled my Tylenol arthritis. I am exhausted all the time. My heart and lungs are struggling and I have been going into shock if I try to do too much physically. That said, I am so grateful for all the people, pets and tools I have to make this easier. I am going to be in pain regardless of what I am doing, or where I am, and life is still overwhelmingly more good than bad, so I am enjoying all of the adventures that I am going on, big and small. They may not look the same as they would five years ago, or even five weeks ago, but they are amazing and life is still so good.

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #raynauds #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #dying #RareDisease
    #Chronicpainwarrior #FunctionalNeurologicalDisorder #grateful

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    My cardiologist won't help me at all when it comes to pots syndrome an getting diagnosed, he claims it's not his area of specialities, he doesn't know anyone either that does. I feel stuck, I feel lost, frustrated this has been going on long enough it's getting worse the older I get. In my teens I only got dizzy now I get more I just don't faint but sometimes I do feel like it, my cardiologist does say my heart goes fast for me but it's normal for me, which I think would be a sign of pots. He didn't do the tilt table test correctly in his office ,since he doesn't actually have a tilt table. Read online how to do one an he only let me stand for 5-10 minutes with the pressure cup on my arm. I was so dizzy an felt nauseous an he claimed I was fine, everyone just Blaims it on vertigo I'm so sick of hearing the words vertigo. I honestly don't know what to do , Charlotte NC is Too far for me to travel I have gastroparesis too ,an celiac disease can't travel far at all Because of the gastroparesis.
    I DONT KNOW WHAT TO DO IM LOST ,AN LOST FOR WORDS.

    Well I was brushing my teeth. An afterwards, my vision got all blurr an I was nauseous an sweating an spinning. Couldn't walk to my room yet so I was siting on the toilet with wet wash cloth around my neck. Had my head down on my sick while sitting on my toilet.
    This is my second spell this week this bad. Every doctor said they don't know who specialize in pots syndrome I feel like I'm being brushed off when it comes to this they always say it vertigo.
    #PosturalOrthostaticTachycardiaSyndrome

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    Dealing with the Dismissal of Our Needs as People with Chronic Illnesses

    Part 1 of 2 It was the summer of 2020, and I had managed about two hours of sleep the previous night. Though I didn’t know it at the time, I was likely experiencing a gluten attack—having woken repeatedly with cold sweats and nausea.

    My housemates and I had a nice backyard where purple flowers bloomed from a wall of green leaves. A tall Tahoe-esque tree loomed, and our cat often sniffed at the cherry tomato bushes. Frequently, my housemate L would work back there, of her own volition.

    “Hey L,” I said to her that morning. “I didn’t sleep well last night, and I took the day off from work—so I was planning to nap for most of it. Is there any chance you might be able to take some of your calls outside today? Ia understand if you’d prefer not to, but wanted to ask in case it wouldn’t be an issue.”

    I phrased it in a way that left space for her to say no—as a request, rather than as a demand. That’s why what she said in response caught me so off guard:

    “E, I think it’s very selfish of you to ask something like that.”

    ~~

    Her response winded me. Though I hadn’t expected L to necessarily concede unequivocally to my request, I also hadn’t anticipated criticism and character attacks for simply asking (not demanding, or even expecting). A polite “no” would have gotten her point across just fine, but instead L went for the jugular. I noted as more hurt rushed in to join the pre-existing pain that had already been there.

    Incidents like these confirm my worst fears surrounding asking for help, making requests, or stating needs as a person with chronic illness. When I was first diagnosed with Celiac back in 2020, these fears briefly became even more pronounced. Extreme vigilance is necessary for Celiacs to ensure that we don’t ingest gluten. We often keep separate cutting boards and utensils, and eating out is a fraught process—one that continually comes with risk and the stress of possible gluten contamination.

    Because of all this, some see us as difficult, high-maintenance, and picky rather than simply humans just trying to protect our health against what science has proven to be a genuine threat for our bodies.

    “They think our demands and requirements are inconvenient and annoying. We are too much trouble. We are overreacting,” writes actress and author Jennifer Esposito in her memoir about living with #CeliacDisease.

    Even before I got my diagnosis, I’d written the following back in 2017: It’s become common to poke fun at people who request special food accommodations, or act like they’re a burden. They’re a common punchline in almost everything I’ve been watching or consuming lately.

    This feels unfair to me. People with food sensitivities aren’t making these requests to be difficult; they’re making them because they’re trying to take care of their health. Maybe they break out in hives when they eat gluten. Maybe they feel lethargic, low energy, and dizzy after consuming dairy. The more we make these jokes, the more we discourage people from asserting their valid, extremely important need to keep themselves healthy.

    It’s easy for those of us without food allergies or dietary restrictions to judge because we don’t suffer the consequences that they do. I think we should consider this a privilege.

    ~~

    As members of the #ChronicIllness community, how many of you have encountered dismissal when making requests that others either don’t understand, or downplay the importance of? Noise, light, and certain fragrances are common triggers for people with conditions that affect the nervous system and sensory processing. These are things that might not bother most people. But they negatively affects us.

    It’s a personal trigger for me when a person has just dismissed a need, or when I can feel them shutting down on me. There’s a unique type of panic and helplessness that sets in immediately after. Little else makes me feel more viscerally unimportant and helpless than when someone does this (which I’m working through in therapy).

    Some people respond to requests for reasonable accommodations as attacks, or as limits to their personal freedom. Maybe they think the person is just nit-picking. Or maybe they don’t realize just how profound an impact the, what’s in their eyes just a minor complaint, actually has on the asker’s well-being.

    Complaints of discomfort that is not visible unsettles some people, is I think what’s beneath a lot of these reactions. Sometimes the internal discomfort sparked by these requests pushes them to turn against the sufferer. They might think (or verbalize) things like, “It’s all in her head” or “it’s probably not that bad.”

    They don’t want to fully be

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    Pain levels were extremely intense yesterday and the past few days; yesterday was also the last time I will ever be able to do the stairs going into the basement. 😬 The pain stairs cause me now is nausea and tear inducing, which means I can no longer tuck My 8 year-old into bed at night. 😞 We can cuddle and read on the couch, but walking gets harder by the day and stairs are exhausting and excruciating. This body is struggling, but I am finding ways to adapt. I still had an amazing day, cooking and getting outside, playing games and watching a movie with my youngest and partner.
    🎥🍿
    I absolutely could not do it without my team of family and friends that support me in every way possible. I am so grateful and blessed. Checking off things on my bucket list every day. 💜

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #raynauds #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #dying

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    THANK YOU SO MUCH... WE HAVE REACHED 1,500 members … and counting! If you haven’t joined us yet we welcome you to join our community!

    Thank you for joining us as we support each other with our multiple health challenges! We appreciate you being a part of our community. This group was started with the intention of being a place where members can empathize with each other, find support and offer support to others. We love watching as this has been happening, but we think we can get even stronger! Please consider commenting or responding to other’s posts and responses even more. Even if it’s just a ❤️ or a 👍... or respond with a comment. This really helps us to feel supported and encourages people to post more.

    Thank you for joining us on our journey so far and we look forward to getting to know you all better in the future.

    Your Multiple Health Challenges Leaders! 💜❤️👍

    #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #ChronicDailyHeadache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #Cancer #IfYouFeelHopeless #Hope #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior #Grief #Headache
    #RareDisease #Asthma #Suicide #Trauma #DistractMe #CeliacDisease #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #ParkinsonsDisease #Autism #AlzheimersDisease #Dementia #BrainInjury

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    Pups

    Dogs are incredibly smart and empathic. Ben (my big guy) has been able to sniff out my cortisol levels for years and tell me when I need to take more medication. Jones knows when I need emotional support and comes to comfort me. They know when someone in their pack is unwell and dying. Poor dogs have been impacted by my steady decline in health. Ben is stress shedding and losing his fur in massive clumps. They do not want to leave my side and follow me everywhere.Each time I have a health crisis they know and comfort me. They are a huge part of how I have made it this far; through all my diagnoses, Covid, everything… I couldn’t do it without my fur babies. Shout out to all the pets out there. 💜🐕🐾

    #Abunchofrarediseases
    #dogsarefamily #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #dying #MightyPets

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    Engaged. :-)

    Today I proposed to my partner and she said yes! I created a board game and “accidentally” dropped a card that said will you marry me. It was a great day. I just wanted to share my joy. I hope everybody has a great night.

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #Trauma
    #raynauds #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying #engaged