JN59

@jn59
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

Anyone with hyperandregenic POTS? Curious about solutions/coping mechanisms for adrenaline surges, medications, or comorbidities

Hi there. I was diagnosed with POTS in 2020, and through a lot of self research discovered that I suffer from hypoandrogenic POTS. My symptoms present as visual snow, tinnitus, and heart rate inconsistency daily, and with extreme adrenaline surges at night (still trying to pinpoint my triggers). I’m curious if anyone here has this too, and if so if you have any solutions for flare ups? Specifically the adrenaline surges at night, but also generally.

Also, has anyone had success in getting a medical assistance dog? I’m really interested in doing so with a rescue, but know it’s hard to find.

#Dysautonomia #POTS #hyperPOTS #copingmechanisms

3 people are talking about this
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

Do you experience any side effects from POTS medication?

Hello, I’ve been diagnosed with POTS just two days ago, and was prescribed medication (mestinon tablet, indenol tablet).
Since then, I’ve been experiencing difficulty talkint because the muscles in the jaw and tongue are hard to move (or it at least feels harder to movs). I can’t seem to pronounce some words as easily. This odd symptom comes and goes, and I’m not sure if it’s a side effect of the medication or something else.
Is there anyone who has similar experiences?

2 people are talking about this
Community Voices
JN59

Advice for Next Steps in Undiagnosed MCAS?

Hey, y’all. So I’ve basically been eating the same foods everyday, and something needs to change. Soon, I think. I eat a lot of grains, nuts, and a few other things. I can’t eat anything that’s high in histamine or high glycemic because I will have bad stomach cramps. I’m not certain if I have MCAS, or if it would show up on tests anyway. I do have POTS, and I think if I could manage my mast cell problems then I would be able to exercise more safely (with less lasting side effects).

1. I could cook and grocery shop to get more variety. I don’t think I would follow through on this, because at this point I can only stand and partially concentrate for 10-15 minutes at a time, though I hope to improve this someday.
2. I could experiment with Pepcid and other over the counter stuff. Does this work for anyone?
3. I could search for a doctor to diagnose me. I’m really scared to do this since few doctors know about POTS and MCAS, and I get the impression that the ones that do are too busy to track down. Is there anyway to make the search easier?
4. I could wait and see if my symptoms improve themselves as I transition off my beta-blockers.

Also, Thanks y’all for sharing your MCAS and other chronic health stories, I’ve been encouraged by these communities.

2 people are talking about this
Community Voices
JN59
Community Voices
JN59
Community Voices
JN59

Advice for Next Steps in Undiagnosed MCAS?

Hey, y’all. So I’ve basically been eating the same foods everyday, and something needs to change. Soon, I think. I eat a lot of grains, nuts, and a few other things. I can’t eat anything that’s high in histamine or high glycemic because I will have bad stomach cramps. I’m not certain if I have MCAS, or if it would show up on tests anyway. I do have POTS, and I think if I could manage my mast cell problems then I would be able to exercise more safely (with less lasting side effects).

1. I could cook and grocery shop to get more variety. I don’t think I would follow through on this, because at this point I can only stand and partially concentrate for 10-15 minutes at a time, though I hope to improve this someday.
2. I could experiment with Pepcid and other over the counter stuff. Does this work for anyone?
3. I could search for a doctor to diagnose me. I’m really scared to do this since few doctors know about POTS and MCAS, and I get the impression that the ones that do are too busy to track down. Is there anyway to make the search easier?
4. I could wait and see if my symptoms improve themselves as I transition off my beta-blockers.

Also, Thanks y’all for sharing your MCAS and other chronic health stories, I’ve been encouraged by these communities.

2 people are talking about this
Community Voices

Comobilities

After getting diagnosed with POTS last year, I thought that was going to be the end of the mystery of why I feel so sick. But, just as life happens to unfold, this was indeed not the end.

Once I started treatment, things got a bit better. I could work again and I was only fainting a few times a week, if that.

However, recently, things have gotten worst than ever. I'm back to fainting multiple times a day, except this time it has left me almost completely bed bound. I lost my job, my hobbies, my ability to even shower without someone close by.

It's been hard.

But even worst is I am having bad abdominal pain, constipation, vomiting episodes, and more GI tract symptoms which I've never had before.

I heard that POTS has many comobilities, and I fear that this might be one developing.

I am trying to hold out and change my lifestyle but as the days get worst I fear I may have to go seek urgent help.

What is everyone else's experience with POTS' comobilities, if any? And how long did they take to manifest?#POTS

5 people are talking about this
Community Voices
bee

Has your POTS a gotten worse with other CI?

I’ve had like 12+ CI diseases develop in the past yr-I’m overwhelmed & dying my mum doesn’t get it nor do the other kids…I just want to hide

2 people are talking about this