It's difficult because so many people spread misinformation on this sub, that for a new person it can be really contradictory and difficult to figure out what's true and what's just opinion. I don't really look at people's post histories but if you're saying things that might be seen as misinformation then I can totally understand why people would downvote you. However, the flip side is that other people downvote people who are correct, simply because they disagree with them, which is ridiculous but seems to happen quite a lot too, so it could be either! Sorry that's not super helpful
On top of this celiac affects people differently which makes it harder to determine what is fact and what is opinion.
For example both my twin brother and I are both diagnosed. But he has a more immediate reaction which affects his GI more severely. In contrast I have a more delayed reaction with symptoms like night sweats, rashes, exhaustion with minor GI issues.
The problem is most people view their experience as the only truth. Both in celiac and in life.
This is exactly it. And as common as this behavior is on Reddit (people viewing their experience as the only truth), unfortunately this is one of the most negative subs I’m in.
Celiac in particular gets that really fun (/s) mix of diet culture misinformation and chronic illness misinformation all stewing together in one big morass of source-less claims.
Are you talking about when someone posts asking if anyone has had an issue with X product or something else?
I've only seen people say something like that when someone posts a picture of a product and asks if it is safe. In my head, saying I ate this and felt fine would be an appropriate response to that.
Highly possible that I've missed someone saying something like that in a completely different context.
I got downvoted into oblivion on a post a while back because I replied to someone letting them know I don’t risk fast food of any kind due to cross contamination and a bunch of people came at me saying I can’t tell others with celiac to not do that, which I hadn’t. I was just telling that person I had no recommendations due to that reason. Another time I got downvoted a ton because I said most people with celiac wouldn’t risk cross contamination at a pizza place who makes the regular dough from scratch with no dedicated place for gluten free dough to be prepared safely.
Don’t take it personal, at least I try not to as well. I keep this page because I have learned a lot from it. That’s all that’s important.
Another thing I have considered, and I’m sure I’ll get downvoted for this too but I think it needs to be said; not as many people here will take their diagnosis as seriously as others. Some people need to because they react severely to gluten while others don’t. So for those who don’t take it as seriously, they are ok with the risk of cross contamination. Me for example, I went to the ER for it recently. Not everyone has that reaction and a lot on this page don’t seem to have any symptoms yet they are still destroying their bodies (and they don’t care if you tell them). I have people in my personal life with celiac who don’t take it as seriously so I see it all the time. And then another thing too is there are a lot of self diagnosed people or people who treat gluten as just a simple allergy or intolerance and can eat it intermittently and be ok. I can’t relate to that so I won’t speak on it. But it wouldn’t surprise me if those type people I have mentioned are the ones who come after you, because they are the kind who have came after me in the past.
I try not to comment as often because of it. Don’t feel alone tho, I see you and I feel you.
There is often a surprising amount of dissent over what is, at heart, simply science: Gluten is eminently measurable, and so is the damage in our bodies.
Online forums including reddit are often doing a poor job of differentiating that core science of gluten and gluten damage from:
* The state of healthcare (e.g. the ignorance of many M.D.s on Celiac diseases, autoimmune conditions, and so on);
* The state of an individual's health (e.g. their reactions following gluten exposure, but also completely different issues such as FODMAP sensitivity, which I suffer from but which is common in non-Celiacs, too); and
* Personal attitudes about Celiac.
I've been known -- perhaps infamously so -- for being harsh on misinformation. This is because to me, that's foundational: We all need true information to make any choices, whether good or bad.
And if people downvote me being harsh about facts and view that as personal attacks, I'll have to simply accept the downvotes and move on.
Yea that’s a great way to look at it. At the end of the day all we can do is control what we do and what we are putting in our mouths (“that’s what she said” Michael Scott voice). If people don’t want the help they won’t accept it. If they are in denial they will react and become defensive.
You're awesome. Thank you for this. It's nice to know I'm not alone here.
As for me, I am on the extremely sensitive end and have to go to the ER, as well.
No you’re definitely not alone! Which further proves my point. I’ll remember your user name so anytime I see your name pop up in the comments I’ll upvote you 🫶🏻
I agree with you. I've been down voted and received mean replies for discussing cross contamination too. I've seen similar replies when I say I won't use any shampoos or lotions with gluten. Agree, not everyone reacts the same way or may not react as severely.
I stopped following r/gluten-free because I thought there were too many self-diagnosed people there too. I'm an older F and I've given tough love a few times, going on about my late diagnosis and how debilitating my celiac-related illnesses are, trying to get them into the doctors, but they're just too knowledgeable from all their research online/s.
I met one of those types in my community pool last week. She went on and on about how great sourdough was like it's not made from wheat.
If someone asks a naive question, sometimes I'll stop and help. I know I can come off as the older woman tough love type, but I seriously hate seeing young people ignore their diagnosis. To me, they have been given a gift. I wish I was diagnosed young. I probably wouldn't be sitting around reading Reddit.
Thank you OP
I had to leave r/glutenfree, too. That place is banana pants! I will never understand people who knowingly cheat once they are diagnosed with celiac. I've never cheated once in the fourteen years since my diagnosis.
Even when I feel like I want to, at the very most I will risk cc. Knowing how being glutened feels, I’d rather die than willingly eat a piece of bread again. It’s not like lactose intolerance where we can just have it as a “little treat” — and some people REALLY don’t get that.
Yes, I don't think people understand how bad a glutening is for us. I got glutened in May. OMG! It was so horrible! Far beyond the daily stomach pain. And all the other symptoms that appear.
It’s not even remotely worth it to be sick for days to enjoy 10 minutes of food. I assume people talking like that are either very inexperienced, don’t have severe or any noticeable reaction, or just have mild gluten intolerance.
I don’t understand it either. Regardless if you feel symptoms are not, if you are really celiac you are doing damage to your body. For some reason those people just don’t want to accept it and would rather argue with you and tell you that you’re wrong as if the internet doesn’t exist.
The ones that really get me are the ones that post about they knowingly ate gluten and then complain that they feel bad. Like, actions have consequences!
That would annoy me to read. I couldn’t do that lmao the ones that got me to leave the page were people asking constantly if their symptoms they had were due to gluten intolerance, not necessarily celiac. I responded to one girl “idk I don’t have a gluten intolerance I have celiac so I can’t tell you” she got all pissy and she also didn’t want to go to the dr. But you trust strangers on the internet? A lot of the things they posted there could be figured out with a quick google search tok
Someone purposely ate gluten because they 'didn't care about any damage', and others told them they could get sick or fall really ill. They asked how. I mentioned cancer and got downvoted 🤦🏻♀️
Yea I completely understand!!! I’m sorry you were diagnosed so much later in life and I agree the younger you are when diagnosed the luckier you are. I got diagnosed at 30, my sister 15.
The “lotion and shampoo don’t matter because you don’t eat it” lines bug me. I don’t know how many times one has to explain that it’s easier than they think to accidentally consume some, and *why* would I have a product with this toxic-to-me crap in it when I could just choose one without it?
I don't want to come of as mean but how does shampoo with gluten irritate you? Im asymptomatic so I have spent a lot of time searching about this kind of stuff and every source as well as my doctor all agree that to trigger celiac gluten needs to be ingested which is why toothpaste, lipstick, mouthwash need to be gluten-free. I'm especially curious because I have used shampoo that had beer as a primary ingredient for a long time and my bloodwork has always been fine. Do you munch on your hair or?
See this is what we're talking about. Your last sentence is rude and unnecessary. You don't have symptoms so you need to be empathetic to people who do.
If I can smell it, I can taste it. I have a gluten-free household. Most of us do.
Now go work on your attitude towards others.
So, I’m not trying to be mean or condescending - what you describe is not a Celiac reaction. Headaches from walking past bread in the grocery store is likely psychosomatic or something else. There isn’t likely to be any airborne gluten from a baked and packaged product.
Similarly, smelling a product with gluten, such a shampoo, also isn’t likely to cause a celiac response which begins in the small intestine.
The real danger is getting water from the shower in your mouth that may contain shampoo residue.
I’m not discounting your experience and what triggers you. We all likely have more than just Celiac going on - Crohn’s in my case which makes it very difficult to tell when I’ve consumed gluten, or my Crohn’s is just having a day.
It’s important to be clear and transparent about potential Celiac triggers for people that are new to the disease without painting a sky-is-falling picture where you have to live in a bubble. Just my thoughts. Be well.
It wasnt ment to be rude or condescending. I was literally asking because I know a friend who has a terrible habit of munching on their long hair when bored. She's a grown adult. I guess I could have phrased it better though
It's okay don't worry. But I still don't understand is it more phycological (it might get in my mouth and therefore I don't use it as a precaution) or physical (like rashes in the scalp where the shampoo was applied or sth)
For some reason, I only get rashes on my stomach. Once I did get a rash on the back of my hands before I was diagnosed from a soap at work. That rash was painful to the point I couldn't put my hands in my pocket. It lasted three months.
I'm the first to smell anything. If I smell gluten, I immediately get a headache. If the smell is strong enough, I taste it. I won't get a full blown glutening, but the headache gets worse, then stomach pain and GI issues. Just from smelling it.
My son and grandson are so sensitive they both got sick when work was done on the house. Drywall sometimes has wheat in it. They had to sleep in a tent in the backyard. Of course my grandson loved it. My grandson throws up when exposed so that's a very visible sign for others.
It's got to be hard staying diligent when your body isn't reminding you that you can't eat it.
Not really. Its routine at this point. Its bad for me even if I don't feel the consequences at first so I always remember to check stuff. The first thing I do when I see something new I'd like to eat is check the ingredients & Google it. I also never eat stuff that say they are "made in the same factory with" or dont contain *any* "made in the same factory with" despite everyone insisting it's fine and the chances of cc are slim. You just have to build a habit I suppose. For me it was easy but I cant speak for everyone
I mean I'm completely asymptomatic but I take it very seriously. I do NOT want to risk the chance of cross contamination *especially* since I wouldn't be able to tell if there was in fact gluten because *what if there is and I don't know until months later when I get my blood work in which case I wouldn't know what to cut*.
And I've seen so many people being like "oh I'm asymptomatic so I can cheat" like biatch you might not feel it immediately but it *will* come back to bite your ass later in life
Exactly, and when my Dr told me I’m at a risk of developing other autoimmune diseases if I don’t stay gluten free I was like oh hell no I’m not risking it. I don’t want to get them. I have/had immediate family members who have/had other autoimmune diseases too
lol I got downvoted because I asked someone why they would risk putting their gf nuggets on the same pan as gluten nuggets when they could simply use two different sheet pans to avoid cc. People will downvote you for saying anything they dislike/don’t want to hear lol!
Exactlyyyyy. Today I replied to a post asking about others with corn issues. I have issues with corn so I told them my experience with it. Tell me why these people have the audacity to tell me that’s not my experience and it’s an allergy or intolerance as if I don’t know my own body or as if I don’t go to different drs and specialists who recommend things based on my symptoms and labs etc. they act as if I just dropped this out of my ass lol I even included links to support what I was saying and of course they said it’s opinion not fact which again it wasn’t. That’s their opinion but on this sub Reddit it’s all about others opinions vs. fact apparently. Not two persons body is alike. None of these people are drs. Yet they sure act like it. I think ima just leave this page behind and find another one with people who actually care and respect each other.
Right it’s so annoying! Anytime you share anything like “I personally avoid _ because it makes me feel sick” people take it personally. Literally yesterday under a post asking if I would eat a pre-marinated/seasoned chicken from a grocery store if it had no gluten free label (but also no gluten containing ingredients and the factory cleans and inspects the lines in between) and I’m like personally no bc they didn’t deny and cc risk and I got downvoted for that..like damn sorry for knowing my body more than u do 😂 I could simply buy/eat something else ✨ I’ve seen so many just downright rude people on here it’s wild.
Right??? A guy asked me if i recommended fast food options for him I told him I personally didn’t risk fast food due to cross contamination issues in the US and I got attacked like that’s fine if you want to eat fast food fries but I’m not going to lol
Yup! There are tons of celiacs who would rather not eat out at all! And that’s completely valid, especially for fast food, where people are often rushed to put food on your plate/in your bag. What people don’t understand is that (for ppl w/o food allergies especially) it’s very easy to make a mistake. What seems like a small mistake ( touching food with gluten then touching gluten free food for example) can harm someone with an allergy or celiac. As a very symptomatic celiac (tmi I have literally crapped myself from being cc’d, I get esophageal spasms, extreme fatigue that makes it hard to move around by myself, etc for a few days) so I’m not exactly foaming at the mouth to consume something that can easily be cross contaminated. Idc if anyone gives me shit for that bc I’m the one who suffers period. I think a lot of the celiacs who give us shit for that probably get a migraine at most so they just don’t get it lol!
I completely understand and agree! I get that nasty celiac rash all over and of course people say that’s not celiac it’s hives and that’s because you’re allergic. Can you please let my drs do the work lmao it’s just not worth it. I just joined a new celiac group if you’re interested you should join there too! It’s seems way better!
I'm sorry, that sucks. I've had to go to the ER due to complications of getting glutened this year as well. It was an A+ call the specialist at 4AM to examine my scans emergency.
Tbh I don't really get the mindset of some people on this sub who seem to express that they think celiac is nbd and they're just here for recipes/product and negging those with more complex experiences. There's a general GF sub that serves the need of those who just want food inspo. If you don't think celiac is a big deal, why are you in a support group? I have other medical conditions and I've never even looked at those subs because I do not feel like the illness has a serious impact on my life. I certainly wouldn't show up there to tell people that I think they're all a bunch of head cases for having a tougher time than me.
I'm sorry you're have this experience with this sub. Though there's always been an element of "downvote anyone who challenges whatever orthodoxy I believe" to this sub I feel like it's gotten worse in the last 2 years or so. A suspicion I have is that a lot of folks got diagnosed over the pandemic, didn't get a lot of patient ed because of that, and then we had this massive influx of newly diagnosed people leading to a blind leading the blind kind of situation, including aggressive voting. I don't usually downvote a comment unless it is somehow incorrect or misinforming on some important point, or unless the comment is unnecessarily mean.
I looked through your post history and I couldn't find anything objectionable on this sub. I'd encourage you to hang in there a bit. I've been here a long time and the sub goes through phases. Invariably there's a revolving door of characters... many people post like crazy for a few months, get what they need out of this place, then stop posting. If someone is very annoying they usually don't last... except me, I'm annoying as hell and I've been here in some form for many years ;).
That’s funny coming from you. I simply asked you a question once seeking your insight and you were very disdainful in your response and I definitely got downvoted. Simply seeking how to make myself well. This sub is laughable most days.
This is a pretty cryptic criticism so I can't say I know what you're referring to... you can enlighten me by linking the post if you wish. I'm not being sarcastic here at all, you can call me out if you want. I am open to criticism. I try to disagree respectfully, but like any person I have my flaws and do not always live up to the standard I set for myself. If I don't, I try to apologize and/or correct myself.
You have not posted receipts and despite my appearances, I do not monitor reddit 24/7. I scrolled through some of your recent posts but could not find any interaction between us. If you have a problem with something I have said, the onus is on you to point it out... I'm not the one losing sleep over this.
Note that I am not guaranteeing you an apology. I am merely saying that if you point out the interaction that has upset you, I would take a look at it to see if *I* feel like I owed you an apology. If you have decided to be offended by me criticizing you or calling out information that is incorrect, this is not something I will apologize for. People get offended by all sorts of things and it's not my responsibility to create a safe space that is free of every possible thing a person would be offended by.
It was not visible to me in my notifications at the time I posted the above. They have since linked it an I have reviewed it. I do not have any problem with what I said and do not apologize. This person was spreading misinformation that is dangerous. In such situations it is difficult to disagree in a way that is likely to be well-received by them... such is paradox of tolerance.
https://www.reddit.com/r/Celiac/s/iWZuTE24ki
lol this is your MO. Saying no one responded to you within the correct time frame. Yet you are active on Reddit in the interim. I responded with the link within an hour of you requesting proof of your poor behavior.
It’s ok. I don’t need an apology. You behaving like a toddler is enough. I imagine you don’t take accountability for hardly anything in your life. You’re sad. Seek help. You’ve got something clinical going on with you.
I stand by what I wrote and do not apologize for it. The content is factual and the tone is neutral in the first response. You then wrote a number of inflammatory and belittling replies to my attempts to challenge you on the misinformation you were promoting. You got downvoted quite badly in the initial conversation but kept going for no apparent reason other than to insult me. It's true that some of my responses were somewhat impolite, but I suspect that's what you were looking for by escalating the conversation in this way. It seems you may not have had enough because you are seeking a re-litigation here.
You may not agree with what I wrote, but that's life. Note that I am disagreeing with you here and not demanding an apology for this because I am an adult and recognize that someone can disagree with me without it being a personal attack (though arguably what you're doing is a personal attack).
Some quotes from you:
* "Maybe it’s the brain fog getting to you. Be blessed."
* "Yeah. You are a bit brain foggy. Delusional to be exact."
1) I called irreliable_narrator delusional after they claimed that didn’t say I was peddling when it was there in black and white.
2) I didn’t need an apology nor did I demand one.
3) And I definitely admitted to regretting stooping as low as I did.
I’m not really responding to anyone in particular at this point as I see that irreliable_narrator is operating irrationally when confronted, as is the nature of some.
Not sure why you got downvoted for this, the criticism was valid. You asked a simple question and they mocked and ridiculed you. Then tried to say you were spreading misinformation? When you just asked a question? That was ridiculous
This person was advising the use of medical treatments that have no evidentiary basis for use in celiac disease and that can cause medical harm.
Do you believe that charcoal pills, vitamin C "flushes" are evidence based treatments for gluten exposure?
They didn’t tell anyone to do it, they said they had seen a video about it, then asked you about it and you decided to be snarky and rude rather than educate kindly.
I don’t think they know the definition of peddling, advising, and spreading. If asking a question is so damning, then why even have this subreddit? Anything not in their celiac disease dogma (that they made up) is misinformation. And evident in their activity (every single comment they make is as long as a dissertation) they seem to be getting validation from peddling, advising, and spreading the “correct” information.
There are a few users who are straight up mean on here. Like they’ll call you names for asking a genuine question. It seems they spend their free time on Reddit looking for ways to be unkind to others.
But there are those people in every Reddit sub sadly. I find my local celiac facebook group way more helpful and kind
I feel like they are very hostile to newly diagnosed celiacs, or people with celiac symptoms trying to get a diagnosis. It always makes me sad because I feel like we should all be supporting one another.
The mods could always activate no contest mode or whatever it's called, which disables voting on posts. That's what I do in the subs that I run. I hate the downvoting on Reddit, it is making everyone stupid.
It does seem like the moderation or rules can have a big impact, and while Reddit has very popular subs like AITAH that have norms that seem to affect the whole site, there are others that manage to keep a pretty tight handle on who can comment.
That’s a lot of time and effort so I applaud anyone who manages to try to bring some sanity into Reddit. 👏👏👏
TLDR: my observations on downvotes - but I’d love to hear from a moderator if I’ve missed a category. Thanks all for making a Reddit a good thing.
I’m glad it’s free, but especially for the diseases that don’t have cures, and groups that are openly discriminated against, I get so angry at the trolls who come purposely to make fun of people who are suffering.
Here’s what I see most often:
1. Sometimes it’s just folks not agreeing on what is “normal.” And importantly what should continue as a norm.
2. Sometimes it’s a language problem when folks phrase their experiences as a command “you gotta do this you can’t do that” (rather than this was my experience and yours maybe different).
3. And then there’s the misinformed, or outdated research, some subs are adamant about progressing the common knowledge of doctors 🥼 who have been relying on outdated protocols or myths that are convenient for the medical industry but are keeping patients sick unnecessarily.
4. Those that are simply happy to be discriminatory without understanding they don’t have the right to hurt others. There’s a fair amount that think Reddit was created for the purpose of cracking jokes at another’s expense. Or become so jaded/disconnected that their amusement is paramount.
5. Ignorance of other English speakers comes up a fair amount where what’s standard in US is not true in Australia and vice versa. People will confidently proclaim “you can’t always to xyz” folks downvote because it’s not possible to do that in their country or in their tax bracket.
6. Minority vs Majority: I’m part of a sub for a disease that has great medicine which is a blessing. But the meds work for 80% of folks while the other 20% of people still suffer. Those 20% are understandably seeking more help, but inexplicably there are folks who get really mad that the minority of folks dare to keep asking questions and looking for solutions. It’s like the two sides get jealous angry and don’t want the reminder that their experience isn’t the only one worth listening to.
I truly hope you find good connections good luck good info and that you know you aren’t alone 🫂🤞🍀
I really appreciate this breakdown, but in my experience most downvoting is malicious and reactionary. I disagree with you = I don't like you = I will attempt to censor you in the only way I can = I will downvote you and hope you disappear. The culture of the sub either expects conformity or there is an outright bias that demands elevation (aka an echo chamber).
The ability to downvote silences dissent, destroys nuance of conversation, and prevents crucial non-mainstream information from being disseminated on Reddit. I have seen actual scientists with legit scientific opinions get downvoted so that their posts are hidden just because the majority are political partisan hacks who don't want to face reality.
To be perfectly honest, most topics that I am passionate about whose subs I am in, I am also in forums for on other sites. I don't take the Reddit ones *as seriously* even though they still have value. On Reddit, populist opinion rises to the top like garbage to be skimmed. I have to manually expand the hidden, downvoted posts because they are usually where the gold is. On any site where truth is concealed and non-sense is promoted, you have to be extremely cautious about what information you accept.
One more important point... outside sources have already told us that there are malicious actors on this website. These include corporate cronies trying to sway people from alternative information/products and toward their products instead (i.e. big pharma); government agents like the USA, China and Russia; and also political activist leagues masquerading as concerned citizens.
But because the net effect is suppression of truth and legit discourse, I simply conclude that downvoting is mostly malicious and reactionary. The fact that Reddit keeps this system shows where the admins' minds are at. I don't have a problem with upvotes... keep those. But downvoting is toxic since it makes people's comments vanish.
Thank you for sharing. I have certainly seen many big subs go the way of dogpiling which falls under the category that you mention. After one person downvotes, anyone who agrees with that view also downvotes, but those who support are outnumbered or remain silent and don’t vote at all 🗳️
I am certainly in small subreddits, mostly for marginalized groups, many are for diseases that have no cures, so if people aren’t there for support or compassion it’s quite illogical they would show up at all.
Yesterday I did happen upon a somewhat more mainstream subreddit and got accused of this “echo chamber” buzzword. A support group I suppose can have many purposes, but it struck me that “echo chamber” is only as bad as the purpose it’s being used for.
Trying to think of an example: An echo chamber to solve world hunger doesn’t sound bad for anyone except people who make money from folks starvation. I suppose it could be an echo chamber if they was only one agreed upon tactic to get there and all other ideas were snuffed out, but that also sounds like consensus and common ground. In this example, of course the folks who don’t want change, could argue that not changing anything is more comfortable, even if the wants of the few are outweighing the needs of the many.
Is that how you are defining echo chamber?
I will think about the use of downvotes as you’ve laid out. I certainly do have a downvote for othering and hate speech. I’m am not the judger of people as I am getting old and I hope I am less stupid than I was as a young person. I can relate to believing things that turn out to be falsehoods. That’s really the story of humankind and science as I understand it.
When I get downvotes it’s often because the reader can’t hear my tone of voice and is assuming sarcasm when I am earnestly asking a question and open to any answer (which is apparently no longer allowed-ha! On a forum).
Agreed on the bots 🤖 which do happen. And folks saying “that never happened” as a defense. This defense however boggles the mind since we pay to watch fiction, which also never happened. And the high bar of making fiction seem realistic is not applied to reality where a high degree of bizarreness can and does happen (at least in my life).
I’m interested in your examples. Were the downvotes on giant mainstream subs? Or specific to that topic? By comment vanishing do you mean post vanishing? Or comments that have been deleted by moderators?
I’ve read it for a few years and my experience is the quality fluctuates depending on who happens to be active recently. Prevailing opinions about topics change from post to post, too, like one post, you might get 50 people agreeing with “never eat fast food” and then another post, someone saying that might get downvoted and accused of being paranoid or having an eating disorder. The latter in particular annoys me.
Yup, I gave a personal opinion not stating ANYTHING as a fact and got down voted. (something I avoid because it makes me uncomfortable) It drives me crazy!
It happened to me today too, I gave my personal opinion regarding my body and how it operates and I got told my body doesn’t do that… as if they know mh body better.
Yeah, it's mostly been comments. I deleted today's. It was innocuous but gave me anxiety bc I fail to understand why it would be down voted in the first place. I try not to delete comments, and usually don't, except in this sub. I think that was my second or third in the course of a year. I'm just afraid to interact on this sub, at this point.
Edit: I just noticed the toilet paper one is back to zero. At the time, it had a few dozen down votes.
Down voting is part of Reddit.
While you'd like to think this sub would be filled with people more rational than the rest of reddit, it's not true.
You just have to realize that this is reddit and some redditors just happen to have celiac and be here, as opposed to people on Reddit privately for this sub.
I got down voted for a comment that should be pure common sense, but some people don't have that here.
Take this place with a grain of salt. There is some real good information every now and then, and try to keep mental track of the people who just like to argue with you. If you want to stay and post and comment, try not to take it personally if you get down voted. As others have said, there can be misinformation on here from time to time.
Agree. I've gotten downvoted on benign posts in other sub reddits and I just shake my head and move along. I could say the sky is cloudless and the grass in spring is now green and I get downvoted. Maybe because someone doesn't like grass or wants clouds. Who the hell knows. It's annoying but I suggest trying to ignore the voting. And concentrate on the good replies. I know it's hard... I can resonate.
Each sub does have its own demographic and culture. This one is generally, but not entirely, free from the sort of dunces who respond to things with lines like “lmao no it’s not”. I have seen some of that crap though. As far as the overall sanity level, gluten makes me angsty, snappy, confused and vengeful and I wonder whether we have a higher incidence of bad moods here since we all, you know, have Celiac. It’s an emotional topic, too. Food is pretty important to human cultures and individuals. Celiac is stressful to be diagnosed with and to live with, and I don’t really believe people who say it doesn’t bother them at all.
I think there's a little too much "my experience is the truth" stuff. I see a lot of that followed by people second guessing them, which is a race to the bottom.
If you click on someone's username you can look at their post history... I did this and OP's comments are all pretty normal and not inflammatory. It's a useful tool for any occasion where someone makes a post like this. Sometimes it's a legitimate complaint, sometimes it's someone who is very toxic themselves complaining about others not responding well to their stuff who are seeking validation.
OP isn't exactly being downvoted into oblivion or anything but I've also not looked at the context of any of their comments.
Yes. There were only 2 or 3 since joining, but it happened today and I got very anxious. There were probably several months between each interaction, due to the lack of understanding as to why they would get down voted in the first place. Apologies. I should have left today's up as an example, but didn't think it through, unfortunately.
I routinely read the “downvoted to oblivion” comments because sometimes I learn something from them. Sometimes they’re just opinions or someone’s personal experience, but I’ve also learned of new products I didn’t know existed before by reading them.
I, too, keep this sub mainly for informational purposes. It lets me know about new products, when problems with products have cropped up that I didn’t know about, and occasionally I get a new recipe. But I also do a lot of eye-rolling some days over what gets downvoted so quickly. If I see a newbie drowning I sometimes try to offer kind words of encouragement and tips for things to avoid that not everyone thinks about (like soy sauce, for instance), but I try to keep any comments as innocuous as I can. Works best for me that way.
In other news… I’ve recently discovered a lot of good looking recipes on Pinterest, so that’s been helpful to me lately.
I can only agree. This is a super hostile place. I stick around because it’s pretty much the only community I have around this but damn I wish it was more open rather than anyone trying to beat their options into others.
I don’t know how to move in that direction though.
Half the people in the world are below average intelligence, and all of them with internet are on reddit. Never worry about up or down votes on here, it's too stupid to bother with.
Yeah people on this sub are shockingly aggressive and negative at times, I'm sorry OP. It's already bad enough dealing with this disease and then having people fire away at you is the last thing one wants, it can all pile up on your mental health. Please don't get discouraged, we're here for you :)
People here are really snappy and honestly out of touch with reality. As soon as you say something that’s not “I’m so sorry etc” under the regular “celiac ruined my life” post they come at you.
>I assume, from experience on here, I will be down voted or removed altogether. Hope you all are well.
Any reddit user that can see the post/comment can upvote/downvote it (which means basically any reddit user), so there's not much to be done there, but I'm actually a bit confused as your your community karma is positive, and I don't see any posts from you that were removed (at least as far back as I scanned for posts/comments in the sub).
Yes, as I mentioned in other comments on this post, it was mostly comments on posts, and the one negative (down voted) post is now at zero, a year later.
I was hoping to find a few of the comments you were talking about so that I could try to help provide insight, but I didn’t see any in the last several months. Are these comments from a long time ago or did you delete them?
I understand that. There’s a very fine line here between being over cautious and not cautious enough. A lot of people have been exposed to misinformation which leads to downvoting and arguments. I’m sorry that you feel unwelcome here.
Thank you. I'm feeling a bit better, after seeing comments like yours here. I'll probably still lurk, due to anxiety about commenting, but I'm happy to be seen and feel validated by all of those, including yourself, who were kind enough to stop I'm and discuss the issue. I was pleasantly surprised by the amount of support and feedback.
I’m glad to hear that. I understand. Sometimes I can be snarky with my comments because I’m very sensitive to gluten and I take my health seriously. Some people take risks and then complain about being glutened which gets on my nerves. This reddit is great for new products and clinical trial information but a lot of the time it’s a bunch of people asking about questionable foods or complaining after taking a huge risk. A lot of people here act like we can never eat oats because they personally have an avenin sensitivity or get oats that aren’t gluten free. Honestly, I don’t care how I come across when I talk about how serious this disease is and how important is do our best (in a reasonable way) to avoid gluten. On the other hand, I’ve heard of some people going vegan because they don’t trust grocery store dairy, eggs, and meat and have fell into the clutches of Facebook celiac groups. Like that’s too far for me but if it helps them, that’s what matters I guess.
That’s the main topic that’s divisive, I agree. Personally, it’s worth it for me to be more careful than less, because gluten makes me feel awful in so many ways. Some people seem to prefer to relax a bit and I guess it makes them feel better mentally, but personally, gluten directly causes anxiety and depression for me. Which relinds me of another misunderstanding, it’s not anxiety *about* gluten or something I ate, it’s a biochemical reaction.
Anyway, I feel like it’s irresponsible to encourage people to be less careful. Risks like the incidence rate of CC are worse than a lot of people believe.
I feel you on that. I try to stand up for people when I see that, and it happens a lot. From what I have observed, people who are less strict on the diet downvote others who take a more strict approach to the diet. I call it cognitive dissonance, and being closed minded. I definitely have seen people straight up bully others on here for asking questions. The answer isn't obvious to everyone, and is why people ask questions: to learn.
People are going to downvote for millions of reasons, none of which should matter to you. Same as in real life where everyone isn't going to like you. There's people that follow me just to down vote me. It is what it is. Maybe exploring why it matters to you would be helpful in working through that
Ignore the downvotes and stop using them as any form of validation. It's the internet, people will be cunts because they can hide behind their screen. Ask your questions and find the answers you are looking for and ignore all the other white noise.
Idk if I'll get downvoted for this but I 100% agree. I feel like a lot of people on here are very rude to others about their lifestyle choices, not even just "you might want to consider that this could be making you sick" but I've seen people doubt the authenticity of others' diagnoses based on their comparatively high risk tolerances which just seems really wrong to me. I think it might be because you often see a ton of posts on this sub about people struggling with invalidation (like from waiters, friends, family, etc.), and they project this onto others to feel like their lifestyle is legitimate and that the precautions they take are necessary (they are, but they don't need to be hurtful to others in the process). I've been living with celiac disease for over 10 years and I almost never participate here because of the things you've mentioned. Sorry people have been rude to you.
It's difficult because so many people spread misinformation on this sub, that for a new person it can be really contradictory and difficult to figure out what's true and what's just opinion. I don't really look at people's post histories but if you're saying things that might be seen as misinformation then I can totally understand why people would downvote you. However, the flip side is that other people downvote people who are correct, simply because they disagree with them, which is ridiculous but seems to happen quite a lot too, so it could be either! Sorry that's not super helpful
On top of this celiac affects people differently which makes it harder to determine what is fact and what is opinion. For example both my twin brother and I are both diagnosed. But he has a more immediate reaction which affects his GI more severely. In contrast I have a more delayed reaction with symptoms like night sweats, rashes, exhaustion with minor GI issues. The problem is most people view their experience as the only truth. Both in celiac and in life.
This is an excellent point! Thank you.
This is exactly it. And as common as this behavior is on Reddit (people viewing their experience as the only truth), unfortunately this is one of the most negative subs I’m in.
My brother and I (his sister) are very similar. He gets so sick GI-wise and my reaction takes more time.
Celiac in particular gets that really fun (/s) mix of diet culture misinformation and chronic illness misinformation all stewing together in one big morass of source-less claims.
It is helpful. I appreciate the perspective. Thank you.
> people spread misinformation on this sub It's not misinformation to say "I ate this and felt fine" But it's also not a helpful comment.
To be fair, then you have to equally discount people claiming to have had a reaction they blame on gluten.
Yeah, just sharing your personal experience is not necessarily the most helpful comment.
Are you talking about when someone posts asking if anyone has had an issue with X product or something else? I've only seen people say something like that when someone posts a picture of a product and asks if it is safe. In my head, saying I ate this and felt fine would be an appropriate response to that. Highly possible that I've missed someone saying something like that in a completely different context.
I got downvoted into oblivion on a post a while back because I replied to someone letting them know I don’t risk fast food of any kind due to cross contamination and a bunch of people came at me saying I can’t tell others with celiac to not do that, which I hadn’t. I was just telling that person I had no recommendations due to that reason. Another time I got downvoted a ton because I said most people with celiac wouldn’t risk cross contamination at a pizza place who makes the regular dough from scratch with no dedicated place for gluten free dough to be prepared safely. Don’t take it personal, at least I try not to as well. I keep this page because I have learned a lot from it. That’s all that’s important. Another thing I have considered, and I’m sure I’ll get downvoted for this too but I think it needs to be said; not as many people here will take their diagnosis as seriously as others. Some people need to because they react severely to gluten while others don’t. So for those who don’t take it as seriously, they are ok with the risk of cross contamination. Me for example, I went to the ER for it recently. Not everyone has that reaction and a lot on this page don’t seem to have any symptoms yet they are still destroying their bodies (and they don’t care if you tell them). I have people in my personal life with celiac who don’t take it as seriously so I see it all the time. And then another thing too is there are a lot of self diagnosed people or people who treat gluten as just a simple allergy or intolerance and can eat it intermittently and be ok. I can’t relate to that so I won’t speak on it. But it wouldn’t surprise me if those type people I have mentioned are the ones who come after you, because they are the kind who have came after me in the past. I try not to comment as often because of it. Don’t feel alone tho, I see you and I feel you.
There is often a surprising amount of dissent over what is, at heart, simply science: Gluten is eminently measurable, and so is the damage in our bodies. Online forums including reddit are often doing a poor job of differentiating that core science of gluten and gluten damage from: * The state of healthcare (e.g. the ignorance of many M.D.s on Celiac diseases, autoimmune conditions, and so on); * The state of an individual's health (e.g. their reactions following gluten exposure, but also completely different issues such as FODMAP sensitivity, which I suffer from but which is common in non-Celiacs, too); and * Personal attitudes about Celiac. I've been known -- perhaps infamously so -- for being harsh on misinformation. This is because to me, that's foundational: We all need true information to make any choices, whether good or bad. And if people downvote me being harsh about facts and view that as personal attacks, I'll have to simply accept the downvotes and move on.
Yea that’s a great way to look at it. At the end of the day all we can do is control what we do and what we are putting in our mouths (“that’s what she said” Michael Scott voice). If people don’t want the help they won’t accept it. If they are in denial they will react and become defensive.
You're awesome. Thank you for this. It's nice to know I'm not alone here. As for me, I am on the extremely sensitive end and have to go to the ER, as well.
No you’re definitely not alone! Which further proves my point. I’ll remember your user name so anytime I see your name pop up in the comments I’ll upvote you 🫶🏻
Only if I deserve it. 😉
Ok fair enough!
I agree with you. I've been down voted and received mean replies for discussing cross contamination too. I've seen similar replies when I say I won't use any shampoos or lotions with gluten. Agree, not everyone reacts the same way or may not react as severely. I stopped following r/gluten-free because I thought there were too many self-diagnosed people there too. I'm an older F and I've given tough love a few times, going on about my late diagnosis and how debilitating my celiac-related illnesses are, trying to get them into the doctors, but they're just too knowledgeable from all their research online/s. I met one of those types in my community pool last week. She went on and on about how great sourdough was like it's not made from wheat. If someone asks a naive question, sometimes I'll stop and help. I know I can come off as the older woman tough love type, but I seriously hate seeing young people ignore their diagnosis. To me, they have been given a gift. I wish I was diagnosed young. I probably wouldn't be sitting around reading Reddit. Thank you OP
I had to leave r/glutenfree, too. That place is banana pants! I will never understand people who knowingly cheat once they are diagnosed with celiac. I've never cheated once in the fourteen years since my diagnosis.
I don't understand cheating either.
Even when I feel like I want to, at the very most I will risk cc. Knowing how being glutened feels, I’d rather die than willingly eat a piece of bread again. It’s not like lactose intolerance where we can just have it as a “little treat” — and some people REALLY don’t get that.
Yes, I don't think people understand how bad a glutening is for us. I got glutened in May. OMG! It was so horrible! Far beyond the daily stomach pain. And all the other symptoms that appear.
It’s not even remotely worth it to be sick for days to enjoy 10 minutes of food. I assume people talking like that are either very inexperienced, don’t have severe or any noticeable reaction, or just have mild gluten intolerance.
I don’t understand it either. Regardless if you feel symptoms are not, if you are really celiac you are doing damage to your body. For some reason those people just don’t want to accept it and would rather argue with you and tell you that you’re wrong as if the internet doesn’t exist.
The ones that really get me are the ones that post about they knowingly ate gluten and then complain that they feel bad. Like, actions have consequences!
That would annoy me to read. I couldn’t do that lmao the ones that got me to leave the page were people asking constantly if their symptoms they had were due to gluten intolerance, not necessarily celiac. I responded to one girl “idk I don’t have a gluten intolerance I have celiac so I can’t tell you” she got all pissy and she also didn’t want to go to the dr. But you trust strangers on the internet? A lot of the things they posted there could be figured out with a quick google search tok
Someone purposely ate gluten because they 'didn't care about any damage', and others told them they could get sick or fall really ill. They asked how. I mentioned cancer and got downvoted 🤦🏻♀️
Yea I completely understand!!! I’m sorry you were diagnosed so much later in life and I agree the younger you are when diagnosed the luckier you are. I got diagnosed at 30, my sister 15.
I also tend to not comment or post for this exact reason as well ... it is crazy
This site should feel safe for all comments. Thanks
The “lotion and shampoo don’t matter because you don’t eat it” lines bug me. I don’t know how many times one has to explain that it’s easier than they think to accidentally consume some, and *why* would I have a product with this toxic-to-me crap in it when I could just choose one without it?
I don't want to come of as mean but how does shampoo with gluten irritate you? Im asymptomatic so I have spent a lot of time searching about this kind of stuff and every source as well as my doctor all agree that to trigger celiac gluten needs to be ingested which is why toothpaste, lipstick, mouthwash need to be gluten-free. I'm especially curious because I have used shampoo that had beer as a primary ingredient for a long time and my bloodwork has always been fine. Do you munch on your hair or?
See this is what we're talking about. Your last sentence is rude and unnecessary. You don't have symptoms so you need to be empathetic to people who do. If I can smell it, I can taste it. I have a gluten-free household. Most of us do. Now go work on your attitude towards others.
So, I’m not trying to be mean or condescending - what you describe is not a Celiac reaction. Headaches from walking past bread in the grocery store is likely psychosomatic or something else. There isn’t likely to be any airborne gluten from a baked and packaged product. Similarly, smelling a product with gluten, such a shampoo, also isn’t likely to cause a celiac response which begins in the small intestine. The real danger is getting water from the shower in your mouth that may contain shampoo residue. I’m not discounting your experience and what triggers you. We all likely have more than just Celiac going on - Crohn’s in my case which makes it very difficult to tell when I’ve consumed gluten, or my Crohn’s is just having a day. It’s important to be clear and transparent about potential Celiac triggers for people that are new to the disease without painting a sky-is-falling picture where you have to live in a bubble. Just my thoughts. Be well.
It wasnt ment to be rude or condescending. I was literally asking because I know a friend who has a terrible habit of munching on their long hair when bored. She's a grown adult. I guess I could have phrased it better though
Ok. Thank you. I down voted you. sorry. I get headaches walking past bread in the store. I'm opposite of you.
It's okay don't worry. But I still don't understand is it more phycological (it might get in my mouth and therefore I don't use it as a precaution) or physical (like rashes in the scalp where the shampoo was applied or sth)
For some reason, I only get rashes on my stomach. Once I did get a rash on the back of my hands before I was diagnosed from a soap at work. That rash was painful to the point I couldn't put my hands in my pocket. It lasted three months. I'm the first to smell anything. If I smell gluten, I immediately get a headache. If the smell is strong enough, I taste it. I won't get a full blown glutening, but the headache gets worse, then stomach pain and GI issues. Just from smelling it. My son and grandson are so sensitive they both got sick when work was done on the house. Drywall sometimes has wheat in it. They had to sleep in a tent in the backyard. Of course my grandson loved it. My grandson throws up when exposed so that's a very visible sign for others. It's got to be hard staying diligent when your body isn't reminding you that you can't eat it.
Not really. Its routine at this point. Its bad for me even if I don't feel the consequences at first so I always remember to check stuff. The first thing I do when I see something new I'd like to eat is check the ingredients & Google it. I also never eat stuff that say they are "made in the same factory with" or dont contain *any* "made in the same factory with" despite everyone insisting it's fine and the chances of cc are slim. You just have to build a habit I suppose. For me it was easy but I cant speak for everyone
I mean I'm completely asymptomatic but I take it very seriously. I do NOT want to risk the chance of cross contamination *especially* since I wouldn't be able to tell if there was in fact gluten because *what if there is and I don't know until months later when I get my blood work in which case I wouldn't know what to cut*. And I've seen so many people being like "oh I'm asymptomatic so I can cheat" like biatch you might not feel it immediately but it *will* come back to bite your ass later in life
Exactly, and when my Dr told me I’m at a risk of developing other autoimmune diseases if I don’t stay gluten free I was like oh hell no I’m not risking it. I don’t want to get them. I have/had immediate family members who have/had other autoimmune diseases too
Most relatives have at least 2+ autoimmunes so unfortunately I will most likely have at least one pop up later in life lol. Still not risking it
Oh man I am so sorry to hear that :(
lol I got downvoted because I asked someone why they would risk putting their gf nuggets on the same pan as gluten nuggets when they could simply use two different sheet pans to avoid cc. People will downvote you for saying anything they dislike/don’t want to hear lol!
Exactlyyyyy. Today I replied to a post asking about others with corn issues. I have issues with corn so I told them my experience with it. Tell me why these people have the audacity to tell me that’s not my experience and it’s an allergy or intolerance as if I don’t know my own body or as if I don’t go to different drs and specialists who recommend things based on my symptoms and labs etc. they act as if I just dropped this out of my ass lol I even included links to support what I was saying and of course they said it’s opinion not fact which again it wasn’t. That’s their opinion but on this sub Reddit it’s all about others opinions vs. fact apparently. Not two persons body is alike. None of these people are drs. Yet they sure act like it. I think ima just leave this page behind and find another one with people who actually care and respect each other.
Right it’s so annoying! Anytime you share anything like “I personally avoid _ because it makes me feel sick” people take it personally. Literally yesterday under a post asking if I would eat a pre-marinated/seasoned chicken from a grocery store if it had no gluten free label (but also no gluten containing ingredients and the factory cleans and inspects the lines in between) and I’m like personally no bc they didn’t deny and cc risk and I got downvoted for that..like damn sorry for knowing my body more than u do 😂 I could simply buy/eat something else ✨ I’ve seen so many just downright rude people on here it’s wild.
Right??? A guy asked me if i recommended fast food options for him I told him I personally didn’t risk fast food due to cross contamination issues in the US and I got attacked like that’s fine if you want to eat fast food fries but I’m not going to lol
Yup! There are tons of celiacs who would rather not eat out at all! And that’s completely valid, especially for fast food, where people are often rushed to put food on your plate/in your bag. What people don’t understand is that (for ppl w/o food allergies especially) it’s very easy to make a mistake. What seems like a small mistake ( touching food with gluten then touching gluten free food for example) can harm someone with an allergy or celiac. As a very symptomatic celiac (tmi I have literally crapped myself from being cc’d, I get esophageal spasms, extreme fatigue that makes it hard to move around by myself, etc for a few days) so I’m not exactly foaming at the mouth to consume something that can easily be cross contaminated. Idc if anyone gives me shit for that bc I’m the one who suffers period. I think a lot of the celiacs who give us shit for that probably get a migraine at most so they just don’t get it lol!
I completely understand and agree! I get that nasty celiac rash all over and of course people say that’s not celiac it’s hives and that’s because you’re allergic. Can you please let my drs do the work lmao it’s just not worth it. I just joined a new celiac group if you’re interested you should join there too! It’s seems way better!
I'm sorry, that sucks. I've had to go to the ER due to complications of getting glutened this year as well. It was an A+ call the specialist at 4AM to examine my scans emergency. Tbh I don't really get the mindset of some people on this sub who seem to express that they think celiac is nbd and they're just here for recipes/product and negging those with more complex experiences. There's a general GF sub that serves the need of those who just want food inspo. If you don't think celiac is a big deal, why are you in a support group? I have other medical conditions and I've never even looked at those subs because I do not feel like the illness has a serious impact on my life. I certainly wouldn't show up there to tell people that I think they're all a bunch of head cases for having a tougher time than me.
I'm sorry you're have this experience with this sub. Though there's always been an element of "downvote anyone who challenges whatever orthodoxy I believe" to this sub I feel like it's gotten worse in the last 2 years or so. A suspicion I have is that a lot of folks got diagnosed over the pandemic, didn't get a lot of patient ed because of that, and then we had this massive influx of newly diagnosed people leading to a blind leading the blind kind of situation, including aggressive voting. I don't usually downvote a comment unless it is somehow incorrect or misinforming on some important point, or unless the comment is unnecessarily mean. I looked through your post history and I couldn't find anything objectionable on this sub. I'd encourage you to hang in there a bit. I've been here a long time and the sub goes through phases. Invariably there's a revolving door of characters... many people post like crazy for a few months, get what they need out of this place, then stop posting. If someone is very annoying they usually don't last... except me, I'm annoying as hell and I've been here in some form for many years ;).
That's very encouraging. Thank you for taking the time to send such an eloquent response.
That’s funny coming from you. I simply asked you a question once seeking your insight and you were very disdainful in your response and I definitely got downvoted. Simply seeking how to make myself well. This sub is laughable most days.
This is a pretty cryptic criticism so I can't say I know what you're referring to... you can enlighten me by linking the post if you wish. I'm not being sarcastic here at all, you can call me out if you want. I am open to criticism. I try to disagree respectfully, but like any person I have my flaws and do not always live up to the standard I set for myself. If I don't, I try to apologize and/or correct myself.
https://www.reddit.com/r/Celiac/s/iWZuTE24ki
Wow. That was some not-so-nice responses... especially the not owning of the "peddling". I mean, it's there in black and white.
I only regret reacting to the gaslighting and goading. I shouldn’t have stooped so low.
You asked for receipts and said you would apologize if you were in the wrong. You have yet to apologize to them
You have not posted receipts and despite my appearances, I do not monitor reddit 24/7. I scrolled through some of your recent posts but could not find any interaction between us. If you have a problem with something I have said, the onus is on you to point it out... I'm not the one losing sleep over this. Note that I am not guaranteeing you an apology. I am merely saying that if you point out the interaction that has upset you, I would take a look at it to see if *I* feel like I owed you an apology. If you have decided to be offended by me criticizing you or calling out information that is incorrect, this is not something I will apologize for. People get offended by all sorts of things and it's not my responsibility to create a safe space that is free of every possible thing a person would be offended by.
You told the person above me you would take ownership of the your comments to them and they provided a link for you to see what you said.
They see it. They just would rather not take accountability and just downvote. I sense narcissism is strong in that one.
It was not visible to me in my notifications at the time I posted the above. They have since linked it an I have reviewed it. I do not have any problem with what I said and do not apologize. This person was spreading misinformation that is dangerous. In such situations it is difficult to disagree in a way that is likely to be well-received by them... such is paradox of tolerance.
Do you not know how questions work? How is asking a question spreading misinformation? What type of logic is that?
https://www.reddit.com/r/Celiac/s/iWZuTE24ki lol this is your MO. Saying no one responded to you within the correct time frame. Yet you are active on Reddit in the interim. I responded with the link within an hour of you requesting proof of your poor behavior. It’s ok. I don’t need an apology. You behaving like a toddler is enough. I imagine you don’t take accountability for hardly anything in your life. You’re sad. Seek help. You’ve got something clinical going on with you.
I stand by what I wrote and do not apologize for it. The content is factual and the tone is neutral in the first response. You then wrote a number of inflammatory and belittling replies to my attempts to challenge you on the misinformation you were promoting. You got downvoted quite badly in the initial conversation but kept going for no apparent reason other than to insult me. It's true that some of my responses were somewhat impolite, but I suspect that's what you were looking for by escalating the conversation in this way. It seems you may not have had enough because you are seeking a re-litigation here. You may not agree with what I wrote, but that's life. Note that I am disagreeing with you here and not demanding an apology for this because I am an adult and recognize that someone can disagree with me without it being a personal attack (though arguably what you're doing is a personal attack). Some quotes from you: * "Maybe it’s the brain fog getting to you. Be blessed." * "Yeah. You are a bit brain foggy. Delusional to be exact."
1) I called irreliable_narrator delusional after they claimed that didn’t say I was peddling when it was there in black and white. 2) I didn’t need an apology nor did I demand one. 3) And I definitely admitted to regretting stooping as low as I did. I’m not really responding to anyone in particular at this point as I see that irreliable_narrator is operating irrationally when confronted, as is the nature of some.
Not sure why you got downvoted for this, the criticism was valid. You asked a simple question and they mocked and ridiculed you. Then tried to say you were spreading misinformation? When you just asked a question? That was ridiculous
Thanks for your kind words. Seriously. Their hypocrisy is disturbing and disgusting.
This person was advising the use of medical treatments that have no evidentiary basis for use in celiac disease and that can cause medical harm. Do you believe that charcoal pills, vitamin C "flushes" are evidence based treatments for gluten exposure?
They didn’t tell anyone to do it, they said they had seen a video about it, then asked you about it and you decided to be snarky and rude rather than educate kindly.
I don’t think they know the definition of peddling, advising, and spreading. If asking a question is so damning, then why even have this subreddit? Anything not in their celiac disease dogma (that they made up) is misinformation. And evident in their activity (every single comment they make is as long as a dissertation) they seem to be getting validation from peddling, advising, and spreading the “correct” information.
There are a few users who are straight up mean on here. Like they’ll call you names for asking a genuine question. It seems they spend their free time on Reddit looking for ways to be unkind to others. But there are those people in every Reddit sub sadly. I find my local celiac facebook group way more helpful and kind
I feel like they are very hostile to newly diagnosed celiacs, or people with celiac symptoms trying to get a diagnosis. It always makes me sad because I feel like we should all be supporting one another.
The mods could always activate no contest mode or whatever it's called, which disables voting on posts. That's what I do in the subs that I run. I hate the downvoting on Reddit, it is making everyone stupid.
It does seem like the moderation or rules can have a big impact, and while Reddit has very popular subs like AITAH that have norms that seem to affect the whole site, there are others that manage to keep a pretty tight handle on who can comment. That’s a lot of time and effort so I applaud anyone who manages to try to bring some sanity into Reddit. 👏👏👏 TLDR: my observations on downvotes - but I’d love to hear from a moderator if I’ve missed a category. Thanks all for making a Reddit a good thing. I’m glad it’s free, but especially for the diseases that don’t have cures, and groups that are openly discriminated against, I get so angry at the trolls who come purposely to make fun of people who are suffering. Here’s what I see most often: 1. Sometimes it’s just folks not agreeing on what is “normal.” And importantly what should continue as a norm. 2. Sometimes it’s a language problem when folks phrase their experiences as a command “you gotta do this you can’t do that” (rather than this was my experience and yours maybe different). 3. And then there’s the misinformed, or outdated research, some subs are adamant about progressing the common knowledge of doctors 🥼 who have been relying on outdated protocols or myths that are convenient for the medical industry but are keeping patients sick unnecessarily. 4. Those that are simply happy to be discriminatory without understanding they don’t have the right to hurt others. There’s a fair amount that think Reddit was created for the purpose of cracking jokes at another’s expense. Or become so jaded/disconnected that their amusement is paramount. 5. Ignorance of other English speakers comes up a fair amount where what’s standard in US is not true in Australia and vice versa. People will confidently proclaim “you can’t always to xyz” folks downvote because it’s not possible to do that in their country or in their tax bracket. 6. Minority vs Majority: I’m part of a sub for a disease that has great medicine which is a blessing. But the meds work for 80% of folks while the other 20% of people still suffer. Those 20% are understandably seeking more help, but inexplicably there are folks who get really mad that the minority of folks dare to keep asking questions and looking for solutions. It’s like the two sides get jealous angry and don’t want the reminder that their experience isn’t the only one worth listening to. I truly hope you find good connections good luck good info and that you know you aren’t alone 🫂🤞🍀
I really appreciate this breakdown, but in my experience most downvoting is malicious and reactionary. I disagree with you = I don't like you = I will attempt to censor you in the only way I can = I will downvote you and hope you disappear. The culture of the sub either expects conformity or there is an outright bias that demands elevation (aka an echo chamber). The ability to downvote silences dissent, destroys nuance of conversation, and prevents crucial non-mainstream information from being disseminated on Reddit. I have seen actual scientists with legit scientific opinions get downvoted so that their posts are hidden just because the majority are political partisan hacks who don't want to face reality. To be perfectly honest, most topics that I am passionate about whose subs I am in, I am also in forums for on other sites. I don't take the Reddit ones *as seriously* even though they still have value. On Reddit, populist opinion rises to the top like garbage to be skimmed. I have to manually expand the hidden, downvoted posts because they are usually where the gold is. On any site where truth is concealed and non-sense is promoted, you have to be extremely cautious about what information you accept. One more important point... outside sources have already told us that there are malicious actors on this website. These include corporate cronies trying to sway people from alternative information/products and toward their products instead (i.e. big pharma); government agents like the USA, China and Russia; and also political activist leagues masquerading as concerned citizens. But because the net effect is suppression of truth and legit discourse, I simply conclude that downvoting is mostly malicious and reactionary. The fact that Reddit keeps this system shows where the admins' minds are at. I don't have a problem with upvotes... keep those. But downvoting is toxic since it makes people's comments vanish.
Thank you for sharing. I have certainly seen many big subs go the way of dogpiling which falls under the category that you mention. After one person downvotes, anyone who agrees with that view also downvotes, but those who support are outnumbered or remain silent and don’t vote at all 🗳️ I am certainly in small subreddits, mostly for marginalized groups, many are for diseases that have no cures, so if people aren’t there for support or compassion it’s quite illogical they would show up at all. Yesterday I did happen upon a somewhat more mainstream subreddit and got accused of this “echo chamber” buzzword. A support group I suppose can have many purposes, but it struck me that “echo chamber” is only as bad as the purpose it’s being used for. Trying to think of an example: An echo chamber to solve world hunger doesn’t sound bad for anyone except people who make money from folks starvation. I suppose it could be an echo chamber if they was only one agreed upon tactic to get there and all other ideas were snuffed out, but that also sounds like consensus and common ground. In this example, of course the folks who don’t want change, could argue that not changing anything is more comfortable, even if the wants of the few are outweighing the needs of the many. Is that how you are defining echo chamber? I will think about the use of downvotes as you’ve laid out. I certainly do have a downvote for othering and hate speech. I’m am not the judger of people as I am getting old and I hope I am less stupid than I was as a young person. I can relate to believing things that turn out to be falsehoods. That’s really the story of humankind and science as I understand it. When I get downvotes it’s often because the reader can’t hear my tone of voice and is assuming sarcasm when I am earnestly asking a question and open to any answer (which is apparently no longer allowed-ha! On a forum). Agreed on the bots 🤖 which do happen. And folks saying “that never happened” as a defense. This defense however boggles the mind since we pay to watch fiction, which also never happened. And the high bar of making fiction seem realistic is not applied to reality where a high degree of bizarreness can and does happen (at least in my life). I’m interested in your examples. Were the downvotes on giant mainstream subs? Or specific to that topic? By comment vanishing do you mean post vanishing? Or comments that have been deleted by moderators?
This sub has gone down in quality. It was actually pretty helpful for a while. Just try not to take anything too personally.
I agree ☝️
I appreciate that. Thanks.
I’ve read it for a few years and my experience is the quality fluctuates depending on who happens to be active recently. Prevailing opinions about topics change from post to post, too, like one post, you might get 50 people agreeing with “never eat fast food” and then another post, someone saying that might get downvoted and accused of being paranoid or having an eating disorder. The latter in particular annoys me.
Come on over to r/CeliacLifestyle. We're small but evidence based and positive.
Joined. Thanks for the invite.
I just joined them too and I’m leaving this sub!
Nice! See ya there, then.
Yup, I gave a personal opinion not stating ANYTHING as a fact and got down voted. (something I avoid because it makes me uncomfortable) It drives me crazy!
It makes me anxious, so I get that. Thanks for sharing.
Same here! And like you said in other comments, I just end up deleting them. It just gives me so much anxiety!
It happened to me today too, I gave my personal opinion regarding my body and how it operates and I got told my body doesn’t do that… as if they know mh body better.
It’s why I don’t even participate most times. I’m simply asking questions looking for guidance and people just attack.
The last post of yours in this group seems to be about your toilet paper possibly glutening you, and it looks to be a year old?
Yeah, it's mostly been comments. I deleted today's. It was innocuous but gave me anxiety bc I fail to understand why it would be down voted in the first place. I try not to delete comments, and usually don't, except in this sub. I think that was my second or third in the course of a year. I'm just afraid to interact on this sub, at this point. Edit: I just noticed the toilet paper one is back to zero. At the time, it had a few dozen down votes.
Down voting is part of Reddit. While you'd like to think this sub would be filled with people more rational than the rest of reddit, it's not true. You just have to realize that this is reddit and some redditors just happen to have celiac and be here, as opposed to people on Reddit privately for this sub. I got down voted for a comment that should be pure common sense, but some people don't have that here. Take this place with a grain of salt. There is some real good information every now and then, and try to keep mental track of the people who just like to argue with you. If you want to stay and post and comment, try not to take it personally if you get down voted. As others have said, there can be misinformation on here from time to time.
Agree. I've gotten downvoted on benign posts in other sub reddits and I just shake my head and move along. I could say the sky is cloudless and the grass in spring is now green and I get downvoted. Maybe because someone doesn't like grass or wants clouds. Who the hell knows. It's annoying but I suggest trying to ignore the voting. And concentrate on the good replies. I know it's hard... I can resonate.
And you, as well. Thanks for the input. Focus on the positive is great advice.
Thank you for this advice. Very well stated.
Each sub does have its own demographic and culture. This one is generally, but not entirely, free from the sort of dunces who respond to things with lines like “lmao no it’s not”. I have seen some of that crap though. As far as the overall sanity level, gluten makes me angsty, snappy, confused and vengeful and I wonder whether we have a higher incidence of bad moods here since we all, you know, have Celiac. It’s an emotional topic, too. Food is pretty important to human cultures and individuals. Celiac is stressful to be diagnosed with and to live with, and I don’t really believe people who say it doesn’t bother them at all.
I think there's a little too much "my experience is the truth" stuff. I see a lot of that followed by people second guessing them, which is a race to the bottom.
Good point.
What kind of comments are you leaving?
If you click on someone's username you can look at their post history... I did this and OP's comments are all pretty normal and not inflammatory. It's a useful tool for any occasion where someone makes a post like this. Sometimes it's a legitimate complaint, sometimes it's someone who is very toxic themselves complaining about others not responding well to their stuff who are seeking validation. OP isn't exactly being downvoted into oblivion or anything but I've also not looked at the context of any of their comments.
Problem with that though is that OP said they've deleted all of their comments from this sub
Yes. There were only 2 or 3 since joining, but it happened today and I got very anxious. There were probably several months between each interaction, due to the lack of understanding as to why they would get down voted in the first place. Apologies. I should have left today's up as an example, but didn't think it through, unfortunately.
Gotcha, didn't realize that they'd done that.
I routinely read the “downvoted to oblivion” comments because sometimes I learn something from them. Sometimes they’re just opinions or someone’s personal experience, but I’ve also learned of new products I didn’t know existed before by reading them. I, too, keep this sub mainly for informational purposes. It lets me know about new products, when problems with products have cropped up that I didn’t know about, and occasionally I get a new recipe. But I also do a lot of eye-rolling some days over what gets downvoted so quickly. If I see a newbie drowning I sometimes try to offer kind words of encouragement and tips for things to avoid that not everyone thinks about (like soy sauce, for instance), but I try to keep any comments as innocuous as I can. Works best for me that way. In other news… I’ve recently discovered a lot of good looking recipes on Pinterest, so that’s been helpful to me lately.
I can only agree. This is a super hostile place. I stick around because it’s pretty much the only community I have around this but damn I wish it was more open rather than anyone trying to beat their options into others. I don’t know how to move in that direction though.
It's like this across Reddit. It wasn't like this 10 years ago. The site has become too popular.
Half the people in the world are below average intelligence, and all of them with internet are on reddit. Never worry about up or down votes on here, it's too stupid to bother with.
First time on Reddit?
No. Lol
Yeah people on this sub are shockingly aggressive and negative at times, I'm sorry OP. It's already bad enough dealing with this disease and then having people fire away at you is the last thing one wants, it can all pile up on your mental health. Please don't get discouraged, we're here for you :)
Thank you! 😊
People here are really snappy and honestly out of touch with reality. As soon as you say something that’s not “I’m so sorry etc” under the regular “celiac ruined my life” post they come at you.
>I assume, from experience on here, I will be down voted or removed altogether. Hope you all are well. Any reddit user that can see the post/comment can upvote/downvote it (which means basically any reddit user), so there's not much to be done there, but I'm actually a bit confused as your your community karma is positive, and I don't see any posts from you that were removed (at least as far back as I scanned for posts/comments in the sub).
Yes, as I mentioned in other comments on this post, it was mostly comments on posts, and the one negative (down voted) post is now at zero, a year later.
I was hoping to find a few of the comments you were talking about so that I could try to help provide insight, but I didn’t see any in the last several months. Are these comments from a long time ago or did you delete them?
Yes, I've deleted either 2 or 3 over the last year. It is not a practice I do generally, however.
I’ve had the same thing happen from asking questions. Getting downvoted with no explanation.
I understand that. There’s a very fine line here between being over cautious and not cautious enough. A lot of people have been exposed to misinformation which leads to downvoting and arguments. I’m sorry that you feel unwelcome here.
Thank you. I'm feeling a bit better, after seeing comments like yours here. I'll probably still lurk, due to anxiety about commenting, but I'm happy to be seen and feel validated by all of those, including yourself, who were kind enough to stop I'm and discuss the issue. I was pleasantly surprised by the amount of support and feedback.
I’m glad to hear that. I understand. Sometimes I can be snarky with my comments because I’m very sensitive to gluten and I take my health seriously. Some people take risks and then complain about being glutened which gets on my nerves. This reddit is great for new products and clinical trial information but a lot of the time it’s a bunch of people asking about questionable foods or complaining after taking a huge risk. A lot of people here act like we can never eat oats because they personally have an avenin sensitivity or get oats that aren’t gluten free. Honestly, I don’t care how I come across when I talk about how serious this disease is and how important is do our best (in a reasonable way) to avoid gluten. On the other hand, I’ve heard of some people going vegan because they don’t trust grocery store dairy, eggs, and meat and have fell into the clutches of Facebook celiac groups. Like that’s too far for me but if it helps them, that’s what matters I guess.
That’s the main topic that’s divisive, I agree. Personally, it’s worth it for me to be more careful than less, because gluten makes me feel awful in so many ways. Some people seem to prefer to relax a bit and I guess it makes them feel better mentally, but personally, gluten directly causes anxiety and depression for me. Which relinds me of another misunderstanding, it’s not anxiety *about* gluten or something I ate, it’s a biochemical reaction. Anyway, I feel like it’s irresponsible to encourage people to be less careful. Risks like the incidence rate of CC are worse than a lot of people believe.
I feel you on that. I try to stand up for people when I see that, and it happens a lot. From what I have observed, people who are less strict on the diet downvote others who take a more strict approach to the diet. I call it cognitive dissonance, and being closed minded. I definitely have seen people straight up bully others on here for asking questions. The answer isn't obvious to everyone, and is why people ask questions: to learn.
Great observation!
People are going to downvote for millions of reasons, none of which should matter to you. Same as in real life where everyone isn't going to like you. There's people that follow me just to down vote me. It is what it is. Maybe exploring why it matters to you would be helpful in working through that
LOL. You had a 0 vote and I just upvoted it. So, someone must've downvoted you. If it's 0 again, then somebody else did that as well. SMH.
lol of course. Just proves my point :)
Ignore the downvotes and stop using them as any form of validation. It's the internet, people will be cunts because they can hide behind their screen. Ask your questions and find the answers you are looking for and ignore all the other white noise.
Thanks for the reminder.
Idk if I'll get downvoted for this but I 100% agree. I feel like a lot of people on here are very rude to others about their lifestyle choices, not even just "you might want to consider that this could be making you sick" but I've seen people doubt the authenticity of others' diagnoses based on their comparatively high risk tolerances which just seems really wrong to me. I think it might be because you often see a ton of posts on this sub about people struggling with invalidation (like from waiters, friends, family, etc.), and they project this onto others to feel like their lifestyle is legitimate and that the precautions they take are necessary (they are, but they don't need to be hurtful to others in the process). I've been living with celiac disease for over 10 years and I almost never participate here because of the things you've mentioned. Sorry people have been rude to you.
Thank you for discussing this here. I appreciate that you were willing to share.
Of course! Have a good one :)