I have celiac disease. I got the COVID vaccine. Here’s my story.

celiac and the coronavirus vaccine

Can you believe it’s been a year with this f***ing pandemic? It’s been long. It’s been tough. It’s been depressing. And it’s been politicized. What a year. But I do believe there is hope on the horizon. And tell me Andy Dufresne, what is hope?

Exactly…hope is a good thing. Maybe the best of things.

And right now that hope comes in the shape of a needle. I know there are many of you out there that will not take the vaccine for various reasons and I respect that. Unless of course you believe the vaccine actually inserts a chip so the government can track you. That’s not true. We all know that chip is inserted at birth. 😉

So anyway…I was fortunate enough to get the first does on Sunday. How did it go? What was it like? Any side-effects? Yep…it’s time for a self-interview…only because no one else will talk to me.

Weren’t you nervous about having celiac disease and getting the shot?
Nope. It had been determined it was safe for those with celiac disease.

So Dude…how did you end up getting an appointment?
I called up Cuomo, told him I was Gluten Dude and he put me first in line. Ok…not really. All of the credit goes to Mrs. Dude (with the help of her friends) who tirelessly worked the phones and used every avenue possible to get an appointment. She has also been doing the same thing for her parents, who live in NJ. Yep…she’s good people. Anyway, she finally found a number that got us an appointment in Brooklyn this past Sunday at 1:30.

What made you qualified to get the vaccination in front of other people?
I called up Cuomo…ok I’ll stop. For me, I have an autoimmune disease with a history of cancer and blood disease. Mrs. Dude has a history of cancer and high blood pressure. And at the end of the day, what is most important is that we get enough vaccinations in the country to reach some kind of immunity.

Did you need to bring proof of your health history?
At this location, while they asked verbally about it, they did not require written proof.

Which shot did you get?
Tequila. And then the Moderna.

What was the process like of actually getting the shot?
Ungodly organized and impressive. The facility in Brooklyn is run 24 hours per day and we were offered appointments in the middle of the night if we wanted them. Instead we got them for the early afternoon. On the way to Brooklyn, we drove past the Javitz Center and the cars were wrapped around the building. In Brooklyn? There were only a few people on line and we did not have to wait at all.

We had already filled out forms online so we were already in the system. We just had to fill out another short form, register at one location (it was all outside) and then proceed to the next location to actually get the shot.

Were you scared? Nervous? Anything?
When I was 10, I spent seven days in the hospital, getting blood drawn for what seemed like 37 times a day. When I had my embolism, I had to give myself injections for a month and then I had to get my INR checked via a blood test on a regular basis. So no…I’m used to the needles.

Did it hurt?
Not one bit.

And then?
They made us stay in a tent for 15 minutes to make sure we had no immediate reactions. After 15 minutes, we were on our merry way.

And side effects since then?
Yesterday (Monday), I was a bit groggy, had a small headache and my arm hurt where the injection was. Mrs. Dude felt like she had a slight case of the flu. But here we are Tuesday am (less than 48 hours after getting the vaccine) and we feel totally fine.

When’s your next shot?
April 1. I will then remove my mask, and all of my clothing, and dance thru the streets of the city. Actually, I’ll keep my mask on until I hear otherwise.

So that’s it. That’s my story. May the second half of 2021 bring us back to normalcy. Or at least the new version of it.

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41 thoughts on “I have celiac disease. I got the COVID vaccine. Here’s my story.”

  1. Same here! Very grateful I was able to get it. I’m 70 years old, have celiac disease, chronic inactive hep c, high BP, factor V (clotting disorder), and was SO scared to get it. Only had a slightly sore injection site, slight headache. Vaccination 2 next week. I’ve heard from many people there’s more reactions after #2.

      1. I hear that the reaction is worse if you have had covid and if you have had covid you may only need one dose to be immune

  2. I got my second dose a week ago (Moderna). Sore arm and some mild stomach issues but being celiac I can’t be sure it might have been something I ate! Was kind of worried about the second dose but really a non issue. I’ve also been told that they’re finding most of us older folks (I’m in my 60’s) seem to have less side effects. I’m grateful to have gotten it!

  3. Kay Niedenthal

    I had planned to wait on the Astra Zeneca vaccine, since there have been no allergic reactions to that one, but it was taking too long. I wanted to feel safe. So I got the first Pfizer last week. Sore arm. That’s it. I’m feeling half safe, and it’s a good feeling! Sign up was easy in Indiana. I’m old. It was my turn. My vaccination site was also ungodly organized. Quick process.

  4. Got the Moderna 2 1/2 weeks ago. Sire arm and headache. I meet none of the qualifiers. We live in a small community (400 people), the vaccine clinic for our county is in our town. 10 minutes before they shut down at the end of the day, the clinic called. 10 people didn’t show up. The volunteers started calling people in town so they didn’t let any go to waste. I jumped on the opportunity! Can hardly wait to start traveling again!

  5. I’ve had both doses. After the first one I had headache, soreness, muscle aches and joint pain on and off for about a week. After the second dose everything was much less severe….except for the God-awful depression. And I’m not a depressive person. I spent 36 hours crying and couldn’t stop. Everything’s fine now. The sun is up and I will finish my final two weeks waiting for everything to take full effect. And THEN I will get to hold my granddaughter, who was born on New Year’s Day, for the very first time!

  6. Beth Archibald

    Just got second Moderna 2 days ago and am happy to say I had very few side effects. Sore arm, some sore muscles and headache. Drank tons of water ahead of time and took Tylenol every 4 hours after the shot for the next 24 hours. Twenty four hours later, felt back to normal. I think being old helps! I’m 76 and have asthma and celiac but I’m in great health and can’t wait to start getting out!,

  7. Mark Richardson

    67 yo Celiac and Sarcoidosis too. Both autoimmune diseases. I received my 2nd dose one week ago today. 1st dose resulted in mild fever gone after 20 hours, 2nd dose just a very sore arm.

    I was lucky to get vaccinated and it only happened because I knew someone who was volunteering at the site.

    This vaccine roll out process is pure chaos and this is not how we expect our Government to work.

  8. Gayle Anderson

    I was lucky enough to get my first dose (Pfizer) on Sunday, too! I was still in the 90-day window of having covid, so I did feel sick for a little less than 24 hours. I had to take Monday off because of the headache and fatigue. Today (Tuesday), I’m back to my old self. Can’t wait for dose #2!!!

    1. I’m also celiac with no other health conditions except high blood pressure, which is controlled. The first shot of Pfizer seemed to go ok apart from a severely itchy purple pinky toe on my left foot. Thought I’d been bitten by something. Second shot, seemed like all good👍 24 hours later, my skin started to break out in hives, my torso was bright red and hot like sunburn. The rash spread to my face during the night and my eyes were puffy, red, gritty. I was in pain and scared. I went to the doctor where they administered adrenaline and antihistamine injection. Hospitalised for the day and all better now. Celiac is an auto immune disease and I can think of no other explanation. Wish I knew why.

  9. Belgrath Snape

    I can’t wait! Arizona WAS vaccinating other people in the car with the registered person. Something changed just in time for me to go with my mom and I was refused a vaccine. There were snowbirds in line to get their vaccines which is part of AZ’s phase 1 for everyone over 65. Most snowbirds will not stay here during 100+ temps which means they traveled during the pandemic with little to no concern about getting or spreading Covid. But they sure were first in line to get vaccinated ahead of high risk individuals! Those of us with bad asthma that gasp for breath without Covid have to wait for the vaccine. I have almost died from asthma a few times as a kid (before I knew Celiac was making it so bad) and the panic of not being able to breathe is something you never forget! I wish I could do that thing The Crow does in the movie where I make the Covid deniers in AZ not wearing masks experience the terror of an asthma attack! Thank you for your post though-I was a bit worried about Celiac complications.

  10. William E Lucas

    I’m almost 70, celiac, diabetic, and heart disorder. I had my second shot of Moderna two weeks ago. One of my nieces and a great niece had previously had their second dose of Moderna and where out of commission for several days, so I was expecting the worse. Fortunately, I only had one day of feeling like I had the flu and then I was fine the next day. Good luck on 4/1.

  11. That’s awesome, Gluten Dude! I had my second dose of Moderna this Saturday. I hardly even noticed any effects from the first dose. The second dose definitely got my attention- I was so exhausted I slept all day Sunday, and I’m just starting to be able to move my arm today. It wasn’t miserable though, and I had planned not to do anything for a couple of days just in case. It really upsets me that I see so many people feeling the need to justify why they get to have the shot ahead of others, as if this is a competition. Some feel strongly that their medical information is private, and I’m glad you made the point that every vaccinated person is one step closer to safety for everyone.

      1. Good idea not to plan much. Everyone seems to react differently.
        I got my second dose of Pfizer on Friday. I’m an Illinois teacher and we are considered phase 1B.
        First dose, the only side effect was mild injection site soreness and then hours later, a stiff arm for about a day. (This despite moving it tons.)
        Second dose-some soreness at injection site and then hours later super sore, super stiff arm (I did not move it as much post shot as I did for round 1).
        The morning after my second shot, I felt tired and achy all over (mostly on the same side of my body where I received the shot). Kind of mild flu-like symptoms. I refused to take anything. I want this baby to do its job uninterrupted!! I had a low grade fever, but I probably wouldn’t have known that had I not been monitoring my temp out of curiosity. These symptoms lasted Saturday and Sunday. By Monday I felt like a new person.
        I’m 48 with no previous covid diagnosis.
        Not many people posted about Pfizer and I know I’m lucky that I have gotten both doses, so I wanted to share all I could with everyone. People my age who received same shot here had similar stories. I’ve also read about and spoken with younger healthcare workers (who received vaccine before me) who all seem to have a experienced much greater side effects. For once, getting older benefits us!!!!

  12. So happy for you Gluten Dude! If all goes well my husband and I will get the first dose tomorrow. I am not one to look forward to getting a shot but this time I am grateful for the opportunity.

  13. This is MY OPINION about this issue. I am not trying to tell anyone else what they should or should NOT do. I am just sharing MY STORY which I hope is allowed here.

    My journey to diagnosis was difficult. This colors my interactions with medicine. I realize that my story might be very unique.
    I nearly died from celiac and only celiac before finding a doctor who LOOKED AT ME. I could not walk or feel my feet. I failed the Babinski test three times. That’s where they run a pen up the bottom of your foot. My liver and kidneys were failing so badly that they showed ZERO function on bloodwork. They did not expect me to survive the first night in hospital. I had been seeing $$$,$$$ worth of doctors. They all told me the problem was that I was a girl and girls make things up for attention. It took 5 years to get feeling back in my feet and legs. I still have pain from the nerve damage.

    Then I was poisoned by MRI contrast. This is a highly neurotoxic heavy metal called gadolinium that ends up being retained in everyone into whom it is injected. It was approved by the FDA based on FULL CLEARANCE from the body within a short time frame from injection. Despite knowing that it is retained and there is no way to ever get it out, the FDA continues to allow people to be injected. Retained gadolinium (that is the heavy metal in all MRI contrast material) is PROVEN. Yet, the product is still injected into people every day – many times with the claim that this neurotoxin is “safe” to stay in the body for the rest of your life.

    These first hand experiences frame my trust in the medical profession. I deal with this by doing research. I use my training to discover facts upon which to decide.

    The virus has a better than 99.74% survival rate.

    These shots are experimental. The trials end in 2022 and 2023.
    Pfizer, https://clinicaltrials.gov/ct2/show/NCT04368728
    Moderna, https://www.clinicaltrials.gov/ct2/show/NCT04470427
    AstraZeneca, https://clinicaltrials.gov/ct2/show/results/NCT04516746
    Emergency Use Authorization is for UNapproved products.

    The trials were designed to succeed. That is very poor science.

    These shots cause antigen dependent enhancement (ADE). In animal trials with other corona viruses, the animals got much MUCH sicker and some even died when exposed to the virus naturally. There is no way to know what will happen to humans when the next ordinary corona virus comes along. Remember that the common cold is also a corona virus.

    I have also been following some of the horrific cases of injury. Having retained MRI dye (gadolinium) already causing damage to my central nervous system makes me very leery of jumping in to risk aggravating that issue.

    Autoimmune diseases were never tested with this experimental mRNA shot. That makes us guinea pigs. Celiac is when the autoimmune system fails to differentiate between our own bodies and dangerous invaders. My big fear is that experimental mRNA shots might trigger that to never shut down leaving me with refractory celiac or worse.

    The executives admit that they don’t know if these shots will keep the vaccinated from getting sick OR even stop transmission.
    *** “None of the trials currently under way are designed to detect a reduction in any serious outcome such as hospital admissions, use of intensive care, or deaths.”
    *** “Nor are the vaccines being studied to determine whether they can interrupt transmission of the virus.”
    *** “The same is true of its ability to save lives or prevent transmission: the trials are not designed to find out.”
    *** “trials have never been conducted in elderly people living in the community to see whether they save lives.”
    *** “Our trial will not demonstrate prevention of transmission,” Zaks said, “because in order to do that you have to swab people twice a week for very long periods, and that becomes operationally untenable.”
    *** All exclude immunocompromised people and pregnant or breastfeeding women, and though the trials are enrolling elderly people, few or perhaps none of the studies would seem to be designed to conclusively answer whether there is a benefit in this population”
    *** “Medscape’s Eric Topol has been a vocal critic of the trials’ many interim analyses. “These numbers seem totally out of line with what would be considered stopping rules,” he says. “I mean, you’re talking about giving a vaccine with any of these programmes [sic] to tens of millions of people. And you’re going to base that on 100 events?”

    I already managed to survive despite the very best that modern medicine threw at me. I refuse to be a test subject.

    Like I said at the start. THIS IS ME. You have very different experiences in life and medicine. We each have to make our own choices.

    1. I appreciate your thoughts Cheryl. To me, the potential small risk of the somewhat unknown is better than the reality of what is known.

    2. Thanks for your thoughts, Cheryl. I’ve read posts from you before, and I really respect your ideas.
      While I’m not at high risk to die from Covid-19 right now, my biggest fear is long covid and other complications like blood clots. From what I’ve read, about 10% of the population experiences long covid which includes heart inflammation, lung problems, and cognitive impairment. I personally know a kid in his early 20s that had inexplicable brain swelling with Covid19 that nearly cost him his life. One of my colleagues in his 50s had it over the summer and he’s still “not quite right” and keeps forgetting things and is dealing with brain fog. My 90 year-old grandparents got the vaccine and are doing great, but they lost several friends to covid19 over this past year. Anyway, I know what it’s like to live with a chronic disease and really can’t stand the thought of chronically dealing with the aftermath of Covid-19. My biggest fear is that it will be like the Hep B vaccine and simply not work as effectively on those with celiac disease.

  14. I received my first dose the beginning of Feb. I got the Pfizer one. I had a mild headache the next day and some soreness at the injection site. That was it. My second dose was this past Saturday. At almost EXACTLY the 24hr mark my lymph node under my arm began to get tender, my shoulder got stiff and sore and I had pain radiating up my shoulder to my neck. Sunday it progressively got worse until the lymph node on my clavicle was inflamed enough to feel. It felt like a dime-sized cyst. This caused severe jaw and ear pain as well as neck soreness. Tylenol and a hot pack helped a little but in the end it was the application of Salonpas on the node that made it possible for me to function. It lasted through Monday. I went to bed last night with an angry node and woke this morning (Tuesday) with the inflammation nearly gone and all that’s left is tenderness on the node and the injection site.
    It sure beats being on a respirator or relying on overtaxed hospitals not to gluten me.

    1. I forgot to add, 1st shot I had debilitating depression for about 72 hrs. While I’m sad this time around, the overall inflammation response has been less.

  15. I am 70 and have never shown an immunity to measles though I was exposed to two siblings and was vaccinated along with a booster in my 20s. I am a non-secretor with celiac and gluten sensitivity genes that I believe flipped when I was in my 30s and under extreme stress in the form of tiny blisters. It took me forever to figure it out and I have been gluten free for 7 years without blisters. I am hesitant about vaccines. But a world-wide pandemic is a different animal and I got my second Moderna vaccine last week with only a sore arm. I am planning on donating blood, as I have been doing regularly since the fall, to find out if I have immunity.

  16. Michele Ramunni

    I am 69 years old and was diagnosed with celiac disease 8 years ago. If I don’t get glutened somehow or somewhere my issues are good. I received my 2nd dose of Pfizer last week. In my 1st shot, my arm was a bit sore but no worse than getting a flu shot. My 2nd shot was Great, really felt no after-effects at all. My mother who is 97 received both shots of Pfizer and had no effects whatsoever. In South Florida where we live, it was run extremely well where we got our shots, no long lines, and no long waits sitting in cars. Feel very glad I got my shot, and feel like a weight was lifted from me.

  17. I had my second three weeks ago. I’m 73, relatively healthy if you do t include HP, GERD, celiac and the usual arthritis. Second shot..a small headache and sore arm. What the hell. I volunteered in the Scottsdale area. It was a joy to see peoples reactions after getting their second shot. Some jumped out of their car and did that hi fives. Others jumped out and danced. They were out of Covid prison. Hope hope hope hope soon for all

  18. I got it last weekend as well ! I am 27 and a healthcare worker who also had a mild COVID case in mid Jan. I safely got the vaccine and had zero side effects except slight arm soreness !!

  19. ALL very interesting!
    And good to know, thanks to the Dude, that we are not alone in our fight to live a somewhat normal life with celiac😊

  20. I finally got my vaccine last week. I waited a while to see how the reaction would play out. It was extremely mild, but there was a reaction. I got it at 8 AM or thereabout. I had gotten up early for a mass vaccination event.

    Within minutes my right side, was full of cramping muscles. I started actively stretching my neck and shoulder muscles thinking, OMG please no Bell’s Palsy. That was honestly the scariest part. It lasted a few hours, I took muscle relaxers, which I take every day anyway. It went away. I kept stretching. My migraines normally do affect my right side, so under stress, cramping on the rt side is not a surprise to me.

    During that hour, I had reactions that felt like muscle cramps in my gut and my stomach which triggered nausea. When the cramps started to go away, I was sleepy. I slept the rest of the day.

    For the next week I felt very sleepy and I developed more nose sniffles than usual. I’m terrified of the reports of blood clots so I was careful to take aspirin and vitamin E, even though I usually skip days so it doesn’t build up too much. I figure it’s been a week, so I’m probably OK.

    In the past week I’ve needed my inhaler nearly every day, and that’s unusual. If it keeps up for another few days I’ll see a doctor, but really what can they do? Give me another drug? Thrilling. I do think I should tell the doc though. I’d like to get a “breathing treatment” but I don’t want to go to the hospital and add to their problems, or risk getting the virus. I’ll ask if the doc can do it in her office.

    I’m still coughing more than usual, and my bronchi feel itchy like I have bronchitis, but I probably don’t. Nothing comes up, it’s just itchy.

    My guess is that since the mRNA vaccine targets the spike protein, and that spike protein is found in nearly all the Coronaviruses, there may have been some latent cold viruses that my body was kicking out of their hiding places.

    In addition to Celiac, I have post-viral fatigue, aka ME/CFS and lung damage, and other high risk conditions, so I didn’t have the luxury of choice about the vaccine. If I got the wild SARS Cov-2 virus, I was probably going to die. The sense of relief the next day when I realized that with just one shot, I would in two weeks, have about a 80% chance of being immune… I mean how can one describe that other than utter gratefulness.

    I hear the second shot has more symptoms. So I’ll wait until I’ve had 5-7 days without needing my inhaler to get it. It’s just common sense.

  21. I wanted to share that for those who may be concerned about the mRNA vaccines, there are other options. This weekend I got the Johnson & Johnson Covid vaccine, which is an adenovirus-based platform (viral vector) vaccine, not mRNA. In the studies, women under 55 with autoimmune disease are at increased risk for autoimmune adverse events from mRNA vaccines. These events are very rare, but still a risk. Since I have a history of autoimmune responses to other vaccines and medications (including to the flu shot), I didn’t want to take my chances with new mRNA vaccines until they have been studied in people with autoimmune disease more extensively, since there have been several autoimmune-related adverse events reported with those vaccines so far, including one woman in the trials with Hashimoto’s who went on to develop Rheumatoid Arthritis after vaccination, as well as the events of autoimmune thrombocytopenia that have been reported in the news. The J&J vaccine has had a few adverse events reported, too, but are mostly related to blood-clots, nothing autoimmune-related yet.

    I am 38 with Celiac and Hashimoto’s, and so far the J&J vaccine just made me feel like I had a mild flu for two days, but this morning I woke up feeling totally normal again. I am so glad there are different types of vaccines available on the market so we can make informed choices that will allow us to be protected against Covid while also taking the risks we are most comfortable with!

    1. Correction to my previous post from a few weeks ago: They have now determined those very rare blood clots seen with the J&J ARE autoimmune in nature. However, it is now more than two weeks post-vaccination with J&J for me, and I did not experience any autoimmune issues or flare-ups as a result, so hopefully doctors will be able to figure out which people are most at risk for this reaction so they can prevent them if they continue to administer this version of the vaccine!

  22. OK to keep you updated and for full disclosure… I officially have “Covid arm” from the vaccine. It’s been reported to VAERS. I have no smartphone so it was VAERS. If you have a smartphone and you have a negative effect, the best way is to use the new system through the app.

    Anyway. My arm is still swollen more than a month later. I now have a feeling of stiffness and burning down my humerus (the bone from the shoulder to the elbow). We’re assuming it’s an infection maybe from incomplete disinfection of the injection site. Maybe. I’ve been through two series of methylprednisone, used voltaren, took advil, used heat, used cold, massaged, didn’t massage, left it alone, exercised it… all the tricks have been tried. It came back worse each time. Pain, heat, stiff, lump at the site, painful to raise arm over head. Like a bee sting. But not going away, spreading. Low grade fever, worse aching at night, can’t sleep. Ultrasound tomorrow to see if there’s a clot, but I’m pretty sure it’s a no. There’s no edema. But the swelling has caused some skin stretch marks. Sigh. Antibiotics are the current thought.

    Other than we have a tendency toward more autoimmune issues, I can’t think of why it would be connected to Celiac, so I’m assuming it isn’t, for now. For me personally, I have other reasons, genetic reasons for autoimmune issues.

    I’d rather have a sore arm than Covid, but I’m getting tired of all the “harmless” messages I see online. It’s not harmless to have this for a month. It’s annoying as hell. And will definitely make me think twice about the mRNA vaccine booster. I’ll probably go with J&J for boosters, even with the risk of clots. Covid arm should be taken more seriously and the cause should be investigated.

    1. I also had this exact experience from a tetanus/pertussis & diphtheria (Dtap) vaccine 10 years ago. And it triggered autoimmune problems. 2 years ago after begging doctors to look at the constant pain in my left arm where the vaccine was administered, I had someone do the test for celiac reluctantly telling me it’s IBS, because you are a women. He was shocked how wrong he was when the scope was positive for severe celiac. But I also need to mention having colonoscopies can set this all in motion as well. Which I had in the same year of receiving the Dtap. Needing a tetanus due to an accident I was unable to find a vaccine without pertussis & diphtheria. I searched the Chicagoland area…NO tetanus vaccine anywhere. My symptoms were so severe, I had Obama Care, which was no care at all. That I moved out of the state to a job to get health Insurance…not non-obama care. I am wondering if this is all from PEG Propylene Glycol? Both in the vaccine and the solution for colonoscopies. Reading the warning’s about PEG…it can trigger autoimmune, In the gut, joints & soft tissue. As I sit here today I am still in pain from my shoulder to my elbow, that no test can find a cause. I am scared to death of the vaccine. I have Co-vid March 2020. And cannot get a doctor to run a test for PEG allergy?? I have been in chronic pain for 10 years, no meds, strict celiac diet helps. Developed inflammation for the past year from having co-vid. And every doctor I have seen all the $$$$ I have spent I am still out here on my own trying to decide whats best?

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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