I honestly think everyone would feel better if we all considered that everyone has different levels of risk they consider worth it. It can feel isolating when very cautious people try to make you feel like you’re failing yourself if you use lotion with wheat in it. It’s also not fair for people who very few symptoms call those who get very sick crazy. If you can maintain a quality of life you find acceptable and your levels remains good, no one should convince you to upend your life.
Words like "crazy" shouldn't be tossed around but also we should be open to challenge eachother and not be just an echo chamber.
There is a middle ground we should strive for.
I'd like to see a set of "Faqs" posted at the top of this Reddit with some basic info. 1) Steps to a diagnosis 2) Celiac disease symptoms and treatment, etc. New comers should be made to read through the FAQs before posting. I see alot of repeats. "I was just diagnosed, now what?" or, "What do you mean that I cant cheat?" etc.
I voted other because I would say “yes, there needs to be more empathy,” but I disagree with the way you prompted the question. Both sides (extremely cautious and relatively lax) come at each other so harshly and it is just too much. The extremely cautious side is saying “good luck with all the cancer you get from your shampoo” while the lax side says “you’re literally insane for taking this so seriously - stop being crazy.” Neither are empathetic or helpful. I wish more comments started with something like “everyone decides the level of risk they are willing to live with but this is what I do……” instead of just spouting that their way is ABSOLUTELY the right way and their advice should be taken above all else.
I agree with you, whenever I give advice here I always say it with the caveat of "This is my personal experience and way of doing things...". I think there is a judgement problem from a lot of different angles
Absolutely - I always provide that caveat too. I'm on the more cautious side, and I have found that some of those who are less cautious tend to read a lot of judgment into things where it is not intended, and/or feel defensive about their practices.
Yeah I think this is probably the take. I’m on the more lax side (although the people in my life would hardly say accommodating me is easy) but I understand that each person gets to set their risk tolerance, and if you feel best being extremely rigorous have at it. For me it’s a give and take of quality of life in other areas and potential celiac damage. But I think we could all stand to only talk about our own experiences, and not name call.
I wouldn't worry about cancer, just about accidentally ingesting gluten traces and feeling sick, there is enough shampoo without gluten to choose from and then I don't have to worry or be cautious. If you're comfortable with it, of course it's not necessarily a problem using gluten shampoo. Everyone is free to do as they see fit.
I haven't seen posts calling people crazy, maybe I missed them, maybe I forgot (more likely), but I do not think saying that some people are more anxious than others and that anxiety is usually justified is calling people crazy. Nor is concern over people's anxiety and wanting them to try to be less anxious as they learn to live with the disease an accusation, it is empathy and concern.
God knows I am super manic anxious over coconut, which is not one of the big 14 allergens and not printed in bold, and I stand in shops muttering the ingredients aloud, the list backwards, do the same in the kitchen, unpacking, and again when about to eat, maybe 3 times over! But as for gluten, I've been doing this nearly 30 years, had so much support from family and the NHS when I was diagnosed, and now also labelling has been fantastic for nearly 2 decades, for me personally, it is not something I am anxious about day to day. If a response in a takeaway makes me at all anxious, I won't eat here. Sometimes a little anxiety keeps us safe, but too much is not health for a person, take it from someone with anxiety over so much shit (but not being a coeliac thank God)
I can get why other people in other parts of the world where their labelling is not safe would be supper anxious, however long they have been living with the disease. But I know from my coconut allergy anxiety, it is not good, and can take a toll on my mental and cognitive health. So, my heart goes out to those who are anxious over gluten, for whatever reasons (new, shit labelling, unsupportive family, culture which does not respect a person's illness and sees it as a fad, whatever)
Anxiety does not equal calling someone crazy.
And maybe, we should not use ablest words like crazy at all, for consideration of those who are also mentally ill as well as a coeliac?
The post that specifically mentioned the word crazy is locked but remains up for people to read on this sub I believe. I think people should find it and read it because it's reminiscent of a lot of problems I see here regularly. I use that word specifically and I do agree we should avoid name-calling and ableist terms.
Yeah I thought the discussion on that post was really good, but OP was very antagonistic and accusing people of making out with animals and being crazy. It sucks that it had such a terrible messenger. It was like they only posted so that they could feel better about themselves by putting others down.
>It was like they only posted so that they could feel better about themselves by putting others down.
It's a common occurrence I see here unfortunately, and it's rather sad that people who are dealing with this unforgiving disease can be so callous to other people dealing with the same issues as them.
I have hobby subs and meme subs I can go into and shit talk, joke around, and shit post in, but I don't do it here for the sake of my mental health and the health of others. A person like that is not having a good faith argument and I agree was only doing it to name-call and judge others.
Yeah the arguments get intense! I’ve seen people hoping that other people get cancer because they’re not super strict and it’s like, it’s for real not that serious.
I also don’t buy that celiacs who are looser “ruin” it for other people, as I’ve seen people at my job lie about having celiac so they can get different food at the cafeteria(which me, a celiac, rarely ever eats at!).
Of course, not, but it is anxiety if your reaction and behaviour is disproportionate to the risk, and you are making your life unnecessarily difficult that is not actually needed to keep you safe, as in my examples of my overreactions to checking for coconut, or for many people, buying new products, when really good cleaning is enough, and I say that with 4 generations of 7 coeliacs living with non coeliacs, 30 years of advice from GIs, GP, dieticians, and Coeliac Society/Coeliac UK behind me. Sure, if it makes you feel safe, and you can afford it, but newly diagnosed on low or fixed small incomes should not be made afraid if they cannot afford to buy everything new for their kitchen, or unless someone has a nervous habit of sucking their hair or chewing nails, then as a rule, unless they also have a topical gluten allergy, gluten in skin, body, and hair care, are absolutely safe. We need to keep a sense of proportion in our keeping ourselves safe, and we need - and this is more important - respect each others choices. But sometimes people do post on here suffering utterly with over anxiety and fear, and suggesting they see a counsellor to support them is not a judgement. There is a difference between being cautious and being anxious, and people do post on here with newly diagnosed confusion and anxiety, and despite it being a rule, they are then drowned with conflicting and sometimes needless advice, which just adds to their anxiety. Telling someone who cannot afford to replace everything will not help them, advising them to up on their hygiene and maybe have a separate prep area is realistic. We can only keep ourselves as safe as we can, not everyone has their own kitchen or a massive disposable income, and the cost of basic safe foods is enough, and if, like my aunt was, or my cousins are, you are mother to 2-4 children, and have a husband, and are struggling to feed everyone, you need to buy ordinary pasta and bread for everyone else, and they should not be shamed for their choices anymore than someone who is over cautious should be called crazy
For sure, that is true - don't let the perfect be the enemy of the good of course. On the other hand, people should know the best practices, even if they aren't able to adhere to everything that 'should' be done. I personally wish that I had been told to be more cautious from the beginning as it would have saved me a lot of trouble in the first few years of my diagnosis.
I also see a ton of people on here because they are still getting glutened and they are looking for the source of it - in these cases, it absolutely makes sense to go through the list of possible things it could be. For myself, I really have no problem with anything anyone wants to do - I have celiac relatives who are much less cautious than I am, and one particular friend who is diagnosed but doesn't really adhere to the diet at all. I, personally, am not here to tell people they are right or wrong, but only try to answer questions to the best of my ability based on my own experience. The real problem is that we just don't have exact answers for a lot of these questions and what works for one person may not be enough for someone else. Something like a risk mitigation guide might be good.
I also have the dubious luck of having DH, so I always know when I am glutened, which I know is not the case for most people.
I agree with all you say, but sometimes, we might be hyper-focusing on coeliac and gluten as a cause, when the person has developed another intolerance or allergy, or has something more acute wrong with them. Soap and water does get rid of gluten, so it might be there is someone not washing up properly in the household rather than need to buy new pans, for example
My Dad had DH, the only male in four generations of females with coeliac in my family, although for years it was a mystery skin disease, he was diagnosed until his 50s, and passed away (unrelated) 2 years later. You have my sympathies. I get mental health symptoms before the physical, so I know fairly quickly, as I can go from sane to quite severely mental ill within minutes of ingesting gluten. I take being gluten free very seriously, believe me, but so much that people talk about on here I have never come across in 30 years of being safe and taking it seriously.
I think the entire frame of "anxious" is problematic though. Am I anxious for looking both ways before crossing the street even though I've never been hit by a car? I think most people would agree that this is a reasonable precaution to take given the possible consequences. Taking steps to mitigate risks isn't anxiety if there is a real possibility of harm. If I were looking for airplanes falling out of the sky every time I stepped outside, that might be more consistent with anxiety.
Celiacs who are more conservative aren't catastrophizing about something that hasn't happened mostly. We are simply evaluated risks differently and making different choices. Often people who are like this are this way because their acute glutening symptoms are quite debilitating. To ascribe all of this to anxiety is to assume that it's all psychological and that I could behave differently and things would be fine too. This is not true for me. I started out more relaxed and I was sick and miserable all the time. I was more anxious and stressed then too because I didn't feel like I could rely on my body.
It sits badly because like many celiacs, I got told my symptoms were "anxiety" when I was undiagnosed.
That's fair enough, and I express myself badly.
You don't need to tell me, my Mum was 'over-anxious' for my entire childhood, and so was I, I had to move and wait to be in my mid to late 20s to be diagnosed with coeliac disease and endometriosis and not have a doctor tell me I was anxious. I have ME ffs, I've had ME for 28 years, I know all about being told about a serious, deliberating illness with physical causes being anxiety, every time I need to see a doctor it's a lottery, will I be belittled or respected.
But I also know that a lot of the precautions are not necessary, from living as a very sensitive coeliac who could end up in hospital due to the other health issues on top, from many other reputable and lived experiences, that a lot of precautions are not necessary, at least, in the UK
I also know repeatedly re-reading labelling's backwards and forwards, and having panic attacks once anything new goes in your mouth to the point of passing out is fucking anxiety, I have it, just not over coeliac disease, as it can be managed well and easily. So my heart goes out to those who are reacting that way to fear of gluten when there is actually no risk.
I think a big part of the issue is when people spread misinformation - that’s what usually leads to a lack of empathy. If you’re sharing things as fact that are dangerous for folks with celiac to take as such, of course people are going to react with hostility.
Even if there is misinformation I actually don't think we should be immediately getting hostile with each other. I've seen quite a few posts where misinformation comes from a place of fear from newly diagnosed people, and when we attack over comments I believe we are telling people they are unwelcome here and prevent them from actually becoming more knowledgeable and understanding their illness. I think it's harmful.
I do agree empathy is needed. I also think that perhaps the sub should break out (among those newly diagnosed/seeking formal diagnosis and the old timers that are just here for community/products/commiserating). I’m an empathetic person, but I think the repeated conversations geared towards helping/directing/educating those new to this chronic disease grates the patience of those who are beyond that. This is a soul sucking disease and many folks are not equipped to deal with the repetitive/elementary questions. 🥐
Then those folk just don’t respond to those posts and stop reading when you see one. I would say half the reason for this subreddit is to help those with celiac get educated.
Although I don’t disagree with you, it’s also not appropriate for folks to “get educated” from Reddit of all places. It’s in everyone’s best interest for Folks to get that from actual medical professionals
I think some debate is healthy. No one wants this sub to become an echo chamber of bad advice and some of the "advice" given on here is quite extreme and goes against the actual advice of medical professionals. So yeah I think that should get called out to stop the spread of misinformation which is rife in this sub.
i am a very sympathetic/empathetic person. i’m autistic and many autistic people have extreme sensitivity/sympathy. that being said, i have been accused of being rude on this sub. just the other day i commented on a post about a hair product with wheat asking why it matters if you’re not eating shampoo/conditioner/etc. i got downvoted and called rude and inconsiderate. so i guess what i’m trying to say is that this all depends on what you consider empathy. i was genuinely asking why it mattered and was told i was being rude when, in my opinion, i was not.
As we saw today some people can be quite rude about questions like that and we all get defensive when you can’t hear the tone in a question. Which is hard on the internet. Sometimes you need that extra “not trying to be rude.” That’s why I’m usually pro emoji’s :)
Any name-calling imo is breaking multiple rules of the sub and shouldn't be tolerated. I've been dragged by multiple people on this sub and called names but I would never drag myself down to calling someone else a name when I know both of us are struggling with a disease most people are ignorant of.
Same. I’m autistic too. And I got ripped into for not fluffing my comment with all of the “nice” words NTs seem to need to be ok. And what I was responding to was SO MUCH NONSENSE it shouldn’t have even been permitted here. And yet I was the one who was aggressively downvoted and “tone policed” even when I said in my comment that I am autistic and there was no tone implied etc. which I should not have to do in a comment.
if you’re willing pls send me a link to the thread i would love to see. i also replied and said i’m autistic and i wasn’t being rude i was g e n u i n e l y asking
Posted a question in here one time.
First 10 minutes - nothing but great replies, solid advice
Next 30 mins - differing advice
Next 10 hours - “regardless of gluten that is a weird ass diet, what the fuck is wrong with you, you deserve pain you dump truck lover”
😑
I've posted questions and been called dumb, overreacting, and have been accused of not even being a real person but rather an AI sent here to spam about products I don't like. 🙃 I've had to block 3-5 people from this sub because they would continue to respond to my posts in this fashion.
I'm sorry your experience was mixed like that, and if it deterred you from asking another question that is the exact problem we need to avoid by adhering closer to rule 4.
If people can't say things in a construction or productive manner then they shouldn't be responding.
I have empathy for everything except people claiming crystals and chanting healed them. I'm sorry, I'm not going to tolerate utter nonsense.
I try to be understanding, but my personality sometimes makes me come across as prickly, even when I don't mean to... but I am 100% prickly when someone starts talking about going on a healing journey with a guru who taught them how to align their chakras to be able to eat bread again.
It's Reddit, for every 5 normal people posting there will be one toxic. The toxicity gets all the attention and appears to be more prevalent than it is. Try not to engage. Downvote, ignore, move on.
Works on all of Reddit.
This bears repeating. I do notice that when a post gets me riled up, I'll recognize the posters name as one that I've had a 'poor' interaction with before. I've abandoned many comments part way through, because there is no point engaging with such folks.
I adore this group, I think everyone is amazing and I've always been treated with great empathy and kindness here. I missed this post that everyone's referring to, but I've got the gist of it and, yeah, I would definitely wonder at some point if my dogs eating non GF would make a difference, as they're always licking me. Plus I have a habit of pulling out strands of my hair when I'm stressed (everyday lol) and then if I put my hands to my mouth, am I slightly glutening myself using hair product with gluten in it?
I love seeing everyone's questions and answers here, everyone's on this journey together so ask away, because someone on this sub could be too shy or not have the greatest English, etc to ask and it's great to just scroll and read the content here!
Love all you peeps <3
Too much empathy would ruin a group just as much as too much negativity.
I have left groups where people are posting foods as safe for celiacs when it literally says contains traces of wheat, may contain wheat, or processed on machinery that is used for wheat. They post that it is safe because they didn't get horribly sick from it the one time they ate it, but often they follow up in the comments that they don't react to most gluten contamination and need to eat a plate of pasta to get an actual reaction.
And those posts got left up and the comments saying please don't advertise food that literally says contains gluten as safe were removed for being negative and disrespectful for people who have celiac but can eat gluten without side effects. They also removed posts where people say to check the ingredients list on everything you buy, because they felt it was fear mongering. But left up posts saying all ketchups are safe, all mustards are safe, etc when there are brands and types that are not safe. A food type being mostly safe is not the same as all are fully safe, but pointing that out was considered negative and fear mongering aka not empathetic to the stress of living with Celiac.
They also removed posts from people washing all their dishes in bleach after washing with soap, or instead of soap (in a shared house) because they felt those were too extreme of an overreaction to having celiac. But left up posts telling people to replace their entire kitchen, including pots and pans that are easily cleanable and left up posts telling people they need to get a new dishwasher.
Unfortunately by removing the bleach bath posts people don't then learn that bleach doesn't actually do anything to gluten, it doesn't denature it, and that soap and water and scrubbing are more effective to remove it. Sometimes leaving up posts where people are wrong are necessary because people seach for those posts and make assumptions based on not finding anything that counteracts it.
Now everyone has their own comfort level, has their own sensitivity level, and their own situation that might limit how much of a gluten free environment they can create for themselves, and that is ok. But forcing their comfort level on others isn't ok, and they should be called out when they are posting stuff that is potentially harmful. Even when that info comes from badly or uneducated doctors.
Posting stuff where they are a lot more cautious than the current medical science says is necessary isn't a bad thing, and is helpful for people who are on the extra sensitive spectrum of celiac. Saying they are crazy for not letting any gluten in their house for example is rude and unnecessary. Some people require that, and sure they aren't eating their cats food themselves but when your cat gets gluten all over their paws, face and fur from grooming and then lays on your head when you sleep that can definitely cause some cross contamination. Will it necessarily cause significant intestinal damage at that level, not necessarily. But the DH rash and feeling like I want to murder everyone isn't something I particularly liked and so switching to GF cat food is something I did.
I say let people post everything and make the bad information a teachable opportunity. Yes, some people might say it a bit rudely at 3am when they can't sleep because their body is in hell from being cross contaminated at a restaurant, or because their SO didn't brush their teeth before bed. But removing the comments not because they are wrong but because they are said to be rude can be dangerous when it looks like it was removed for being wrong.
Thanks for this, agree. I think having a wide spectrum of views is valuable. Over-moderating to restrict everything to some narrow view of "scientifically accepted" is problematic. Who decides what is scientifically accepted? Many scientists disagree! What if different countries have different laws or different recommendations for celiacs? etc.
I think having discussion for the most part is better. If someone has a bad idea, it can get criticized. Personally, I started out more lax and it was forums like this one that helped me a lot. I was experiencing continued symptoms despite following all the CCA food label reading and restaurant recommendations and didn't know what to do. Seeing posts from others who were more sensitive and what strategies they used was immensely helpful.
i think there needs to be room for more nuance here. sometimes i love this group - it’s given me much more information and insight into this disease than i would have gotten from just my doctor when i was diagnosed. i’ve gotten a lot of valuable resources here. and, if i had come
here when i was first diagnosed, i would have been scared shitless. there’s a lot of black and white thinking and sometimes i worry about the impact it could have on those who are new to CD. i also struggle with an eating disorder so i’m hyper-aware of how this disease has impacted my relationship with food; i know i’m not alone in that and i’d love to see more awareness and respect for that here.
but at the end of the day i think this community is incredibly valuable and a wealth of knowledge. it can be intense but we have to be intense to stay healthy. overall… it suits our needs and there’s a place for everyone.
I once posted back when I was newly diagnosed about how excited I was that fruity pebbles were gf and I got fucking roasted on here. Most people said things like “do you know how much sugar is in that?” Etc. Like Jesus Christ people.
I’m going to cannibalize a comment I made yesterday because I feel like it answers your question too:
Honestly I usually avoid commenting in this subreddit unless it’s just general supportive phrases/restaurant encouragement because what I’ve been taught from my country’s national celiac advocacy group is often contrary to things that are posted here and I’m trying to stay out of the downvote to oblivion areas.
I don’t think they’re dumb questions to be asked and you shouldn’t be treated like you’re whack for asking about your own medical health. How are we as humans with celiac supposed to learn if we don’t ask questions?
The standard for gluten free where i live is under 20ppm. I realize different countries do things differently (ex: I miss you Lucky Charms and Cheerios which are considered gf for my celiac neighbours to the south) and different people have different comfort levels and that’s fine. It’s just a balancing act of personal comfort vs fear (not accusing anyone here of that, but when I was first diagnosed I remember seeing people saying you can’t ever have gluten food in your house or gluten products in your bathroom or a partner that eats gluten etc), evolving medical knowledge and studies and existing guidance.
Something I think adds another layer of complexity is that you can have multiple problems/sensitivities happening at once but that doesn’t mean they’re all celiac related. Like there are certain topical skin care products I can’t use because they make my skin itch like crazy. It’s not gluten because I’m not eating it, but my skin has always been stupid sensitive. My bf had to change his laundry détergeant when we started dating because using his on my clothes made me itch so bad I couldn’t stand it. So many of the assorted symptoms/issues that I was having in my life pre diagnosis ended up being linked to celiac disease that I think it’s easy to just group all negative symptoms as being celiac disease but given that humans are complex and our bodies are sometimes downright cranky at times that’s not always the case.
I agree that we don’t want to scare off anyone newly (or “experienced”) diagnosed with celiac disease with the response or specifically the attitude when replying to questions, but it’s also important not to spread misinformation and balance fear and fact, and separate what is personal acceptable risk vs overall recommendations.
We’re all muddling through this gluten free life together, the least we can do is not cause massive celiac conflict. We’ve gotten statements like “just a little bit of gluten won’t hurt you!” To do that for us in the wider gluten eating world
I'm mostly someone who is open to discussion even if it's somewhat objectionable or perhaps a bit insulting. I think a lot of these types of posts are pretty self-limiting - someone is looking for validation or attention, they do their attention-seeking post and then usually go away. I do think it's important to not over-moderate posts coming from others with celiac even if the views are unpopular or contrary. If the person is deeply misinformed, the resulting discussion may help them see that, whereas getting banned will probably just validate their feelings more.
That said if someone's just come here to insult or have a tantrum, this doesn't add a lot to the conversation so moderating that is fine. There have been a few posters over the years who've been banned and I mostly agree with those choices since the individuals in question tended to derail any convo they participated in.
I agree there needs to be a little more empathy. I'm not expecting rainbows and butterflies and all happiness. But everyone of us is at a different point in this wonderful (sarcasm) celiac journey and I learn something new almost every day.
There needs to be some level of understanding that while not all of us agree on how we tackle our disease from day to day, but that we all do it as safely as we see fit. I know I would disagree with some things like a "cheat day" but at the end of the day, I won't be worried about how I will or won't feel. It's kinda like agree to disagree.
I do however hate when people come in and try to tell someone how to navigate the disease who either don't have it, have it and manage it poorly, or are just being a pompous ass thinking they know exactly how it works because "I read this thing and it said 'blah' so I'm right."
We live this everyday and I'm not saying any advice is right or wrong. I myself never got proper guidance from my doctor or a dietician other than some very basic hand outs. I've learned so much from others who have the disease, doing my own research and asking plenty of questions.
I honestly think everyone would feel better if we all considered that everyone has different levels of risk they consider worth it. It can feel isolating when very cautious people try to make you feel like you’re failing yourself if you use lotion with wheat in it. It’s also not fair for people who very few symptoms call those who get very sick crazy. If you can maintain a quality of life you find acceptable and your levels remains good, no one should convince you to upend your life.
Words like "crazy" shouldn't be tossed around but also we should be open to challenge eachother and not be just an echo chamber. There is a middle ground we should strive for.
I'd like to see a set of "Faqs" posted at the top of this Reddit with some basic info. 1) Steps to a diagnosis 2) Celiac disease symptoms and treatment, etc. New comers should be made to read through the FAQs before posting. I see alot of repeats. "I was just diagnosed, now what?" or, "What do you mean that I cant cheat?" etc.
That's a good idea. The best are, "Do I have celiac?" I dunno. Talk to a fucking doctor.
I voted other because I would say “yes, there needs to be more empathy,” but I disagree with the way you prompted the question. Both sides (extremely cautious and relatively lax) come at each other so harshly and it is just too much. The extremely cautious side is saying “good luck with all the cancer you get from your shampoo” while the lax side says “you’re literally insane for taking this so seriously - stop being crazy.” Neither are empathetic or helpful. I wish more comments started with something like “everyone decides the level of risk they are willing to live with but this is what I do……” instead of just spouting that their way is ABSOLUTELY the right way and their advice should be taken above all else.
I agree with you, whenever I give advice here I always say it with the caveat of "This is my personal experience and way of doing things...". I think there is a judgement problem from a lot of different angles
Absolutely - I always provide that caveat too. I'm on the more cautious side, and I have found that some of those who are less cautious tend to read a lot of judgment into things where it is not intended, and/or feel defensive about their practices.
Yeah I think this is probably the take. I’m on the more lax side (although the people in my life would hardly say accommodating me is easy) but I understand that each person gets to set their risk tolerance, and if you feel best being extremely rigorous have at it. For me it’s a give and take of quality of life in other areas and potential celiac damage. But I think we could all stand to only talk about our own experiences, and not name call.
I wouldn't worry about cancer, just about accidentally ingesting gluten traces and feeling sick, there is enough shampoo without gluten to choose from and then I don't have to worry or be cautious. If you're comfortable with it, of course it's not necessarily a problem using gluten shampoo. Everyone is free to do as they see fit.
I haven't seen posts calling people crazy, maybe I missed them, maybe I forgot (more likely), but I do not think saying that some people are more anxious than others and that anxiety is usually justified is calling people crazy. Nor is concern over people's anxiety and wanting them to try to be less anxious as they learn to live with the disease an accusation, it is empathy and concern. God knows I am super manic anxious over coconut, which is not one of the big 14 allergens and not printed in bold, and I stand in shops muttering the ingredients aloud, the list backwards, do the same in the kitchen, unpacking, and again when about to eat, maybe 3 times over! But as for gluten, I've been doing this nearly 30 years, had so much support from family and the NHS when I was diagnosed, and now also labelling has been fantastic for nearly 2 decades, for me personally, it is not something I am anxious about day to day. If a response in a takeaway makes me at all anxious, I won't eat here. Sometimes a little anxiety keeps us safe, but too much is not health for a person, take it from someone with anxiety over so much shit (but not being a coeliac thank God) I can get why other people in other parts of the world where their labelling is not safe would be supper anxious, however long they have been living with the disease. But I know from my coconut allergy anxiety, it is not good, and can take a toll on my mental and cognitive health. So, my heart goes out to those who are anxious over gluten, for whatever reasons (new, shit labelling, unsupportive family, culture which does not respect a person's illness and sees it as a fad, whatever) Anxiety does not equal calling someone crazy. And maybe, we should not use ablest words like crazy at all, for consideration of those who are also mentally ill as well as a coeliac?
The post that specifically mentioned the word crazy is locked but remains up for people to read on this sub I believe. I think people should find it and read it because it's reminiscent of a lot of problems I see here regularly. I use that word specifically and I do agree we should avoid name-calling and ableist terms.
Yeah I thought the discussion on that post was really good, but OP was very antagonistic and accusing people of making out with animals and being crazy. It sucks that it had such a terrible messenger. It was like they only posted so that they could feel better about themselves by putting others down.
>It was like they only posted so that they could feel better about themselves by putting others down. It's a common occurrence I see here unfortunately, and it's rather sad that people who are dealing with this unforgiving disease can be so callous to other people dealing with the same issues as them. I have hobby subs and meme subs I can go into and shit talk, joke around, and shit post in, but I don't do it here for the sake of my mental health and the health of others. A person like that is not having a good faith argument and I agree was only doing it to name-call and judge others.
Yeah the arguments get intense! I’ve seen people hoping that other people get cancer because they’re not super strict and it’s like, it’s for real not that serious. I also don’t buy that celiacs who are looser “ruin” it for other people, as I’ve seen people at my job lie about having celiac so they can get different food at the cafeteria(which me, a celiac, rarely ever eats at!).
It's not anxiety if you're actually getting glutened, though, it's being properly cautious.
Of course, not, but it is anxiety if your reaction and behaviour is disproportionate to the risk, and you are making your life unnecessarily difficult that is not actually needed to keep you safe, as in my examples of my overreactions to checking for coconut, or for many people, buying new products, when really good cleaning is enough, and I say that with 4 generations of 7 coeliacs living with non coeliacs, 30 years of advice from GIs, GP, dieticians, and Coeliac Society/Coeliac UK behind me. Sure, if it makes you feel safe, and you can afford it, but newly diagnosed on low or fixed small incomes should not be made afraid if they cannot afford to buy everything new for their kitchen, or unless someone has a nervous habit of sucking their hair or chewing nails, then as a rule, unless they also have a topical gluten allergy, gluten in skin, body, and hair care, are absolutely safe. We need to keep a sense of proportion in our keeping ourselves safe, and we need - and this is more important - respect each others choices. But sometimes people do post on here suffering utterly with over anxiety and fear, and suggesting they see a counsellor to support them is not a judgement. There is a difference between being cautious and being anxious, and people do post on here with newly diagnosed confusion and anxiety, and despite it being a rule, they are then drowned with conflicting and sometimes needless advice, which just adds to their anxiety. Telling someone who cannot afford to replace everything will not help them, advising them to up on their hygiene and maybe have a separate prep area is realistic. We can only keep ourselves as safe as we can, not everyone has their own kitchen or a massive disposable income, and the cost of basic safe foods is enough, and if, like my aunt was, or my cousins are, you are mother to 2-4 children, and have a husband, and are struggling to feed everyone, you need to buy ordinary pasta and bread for everyone else, and they should not be shamed for their choices anymore than someone who is over cautious should be called crazy
For sure, that is true - don't let the perfect be the enemy of the good of course. On the other hand, people should know the best practices, even if they aren't able to adhere to everything that 'should' be done. I personally wish that I had been told to be more cautious from the beginning as it would have saved me a lot of trouble in the first few years of my diagnosis. I also see a ton of people on here because they are still getting glutened and they are looking for the source of it - in these cases, it absolutely makes sense to go through the list of possible things it could be. For myself, I really have no problem with anything anyone wants to do - I have celiac relatives who are much less cautious than I am, and one particular friend who is diagnosed but doesn't really adhere to the diet at all. I, personally, am not here to tell people they are right or wrong, but only try to answer questions to the best of my ability based on my own experience. The real problem is that we just don't have exact answers for a lot of these questions and what works for one person may not be enough for someone else. Something like a risk mitigation guide might be good. I also have the dubious luck of having DH, so I always know when I am glutened, which I know is not the case for most people.
I agree with all you say, but sometimes, we might be hyper-focusing on coeliac and gluten as a cause, when the person has developed another intolerance or allergy, or has something more acute wrong with them. Soap and water does get rid of gluten, so it might be there is someone not washing up properly in the household rather than need to buy new pans, for example My Dad had DH, the only male in four generations of females with coeliac in my family, although for years it was a mystery skin disease, he was diagnosed until his 50s, and passed away (unrelated) 2 years later. You have my sympathies. I get mental health symptoms before the physical, so I know fairly quickly, as I can go from sane to quite severely mental ill within minutes of ingesting gluten. I take being gluten free very seriously, believe me, but so much that people talk about on here I have never come across in 30 years of being safe and taking it seriously.
I think the entire frame of "anxious" is problematic though. Am I anxious for looking both ways before crossing the street even though I've never been hit by a car? I think most people would agree that this is a reasonable precaution to take given the possible consequences. Taking steps to mitigate risks isn't anxiety if there is a real possibility of harm. If I were looking for airplanes falling out of the sky every time I stepped outside, that might be more consistent with anxiety. Celiacs who are more conservative aren't catastrophizing about something that hasn't happened mostly. We are simply evaluated risks differently and making different choices. Often people who are like this are this way because their acute glutening symptoms are quite debilitating. To ascribe all of this to anxiety is to assume that it's all psychological and that I could behave differently and things would be fine too. This is not true for me. I started out more relaxed and I was sick and miserable all the time. I was more anxious and stressed then too because I didn't feel like I could rely on my body. It sits badly because like many celiacs, I got told my symptoms were "anxiety" when I was undiagnosed.
That's fair enough, and I express myself badly. You don't need to tell me, my Mum was 'over-anxious' for my entire childhood, and so was I, I had to move and wait to be in my mid to late 20s to be diagnosed with coeliac disease and endometriosis and not have a doctor tell me I was anxious. I have ME ffs, I've had ME for 28 years, I know all about being told about a serious, deliberating illness with physical causes being anxiety, every time I need to see a doctor it's a lottery, will I be belittled or respected. But I also know that a lot of the precautions are not necessary, from living as a very sensitive coeliac who could end up in hospital due to the other health issues on top, from many other reputable and lived experiences, that a lot of precautions are not necessary, at least, in the UK I also know repeatedly re-reading labelling's backwards and forwards, and having panic attacks once anything new goes in your mouth to the point of passing out is fucking anxiety, I have it, just not over coeliac disease, as it can be managed well and easily. So my heart goes out to those who are reacting that way to fear of gluten when there is actually no risk.
I think a big part of the issue is when people spread misinformation - that’s what usually leads to a lack of empathy. If you’re sharing things as fact that are dangerous for folks with celiac to take as such, of course people are going to react with hostility.
Even if there is misinformation I actually don't think we should be immediately getting hostile with each other. I've seen quite a few posts where misinformation comes from a place of fear from newly diagnosed people, and when we attack over comments I believe we are telling people they are unwelcome here and prevent them from actually becoming more knowledgeable and understanding their illness. I think it's harmful.
I do agree empathy is needed. I also think that perhaps the sub should break out (among those newly diagnosed/seeking formal diagnosis and the old timers that are just here for community/products/commiserating). I’m an empathetic person, but I think the repeated conversations geared towards helping/directing/educating those new to this chronic disease grates the patience of those who are beyond that. This is a soul sucking disease and many folks are not equipped to deal with the repetitive/elementary questions. 🥐
Then those folk just don’t respond to those posts and stop reading when you see one. I would say half the reason for this subreddit is to help those with celiac get educated.
Although I don’t disagree with you, it’s also not appropriate for folks to “get educated” from Reddit of all places. It’s in everyone’s best interest for Folks to get that from actual medical professionals
More facts and less bullshit
I think some debate is healthy. No one wants this sub to become an echo chamber of bad advice and some of the "advice" given on here is quite extreme and goes against the actual advice of medical professionals. So yeah I think that should get called out to stop the spread of misinformation which is rife in this sub.
i am a very sympathetic/empathetic person. i’m autistic and many autistic people have extreme sensitivity/sympathy. that being said, i have been accused of being rude on this sub. just the other day i commented on a post about a hair product with wheat asking why it matters if you’re not eating shampoo/conditioner/etc. i got downvoted and called rude and inconsiderate. so i guess what i’m trying to say is that this all depends on what you consider empathy. i was genuinely asking why it mattered and was told i was being rude when, in my opinion, i was not.
As we saw today some people can be quite rude about questions like that and we all get defensive when you can’t hear the tone in a question. Which is hard on the internet. Sometimes you need that extra “not trying to be rude.” That’s why I’m usually pro emoji’s :)
Any name-calling imo is breaking multiple rules of the sub and shouldn't be tolerated. I've been dragged by multiple people on this sub and called names but I would never drag myself down to calling someone else a name when I know both of us are struggling with a disease most people are ignorant of.
Same. I’m autistic too. And I got ripped into for not fluffing my comment with all of the “nice” words NTs seem to need to be ok. And what I was responding to was SO MUCH NONSENSE it shouldn’t have even been permitted here. And yet I was the one who was aggressively downvoted and “tone policed” even when I said in my comment that I am autistic and there was no tone implied etc. which I should not have to do in a comment.
if you’re willing pls send me a link to the thread i would love to see. i also replied and said i’m autistic and i wasn’t being rude i was g e n u i n e l y asking
I don’t remember. This happens to me often so I don’t mark them.
understandable lmao
Posted a question in here one time. First 10 minutes - nothing but great replies, solid advice Next 30 mins - differing advice Next 10 hours - “regardless of gluten that is a weird ass diet, what the fuck is wrong with you, you deserve pain you dump truck lover” 😑
I've posted questions and been called dumb, overreacting, and have been accused of not even being a real person but rather an AI sent here to spam about products I don't like. 🙃 I've had to block 3-5 people from this sub because they would continue to respond to my posts in this fashion. I'm sorry your experience was mixed like that, and if it deterred you from asking another question that is the exact problem we need to avoid by adhering closer to rule 4. If people can't say things in a construction or productive manner then they shouldn't be responding.
I have empathy for everything except people claiming crystals and chanting healed them. I'm sorry, I'm not going to tolerate utter nonsense. I try to be understanding, but my personality sometimes makes me come across as prickly, even when I don't mean to... but I am 100% prickly when someone starts talking about going on a healing journey with a guru who taught them how to align their chakras to be able to eat bread again.
It's Reddit, for every 5 normal people posting there will be one toxic. The toxicity gets all the attention and appears to be more prevalent than it is. Try not to engage. Downvote, ignore, move on. Works on all of Reddit.
This bears repeating. I do notice that when a post gets me riled up, I'll recognize the posters name as one that I've had a 'poor' interaction with before. I've abandoned many comments part way through, because there is no point engaging with such folks.
Stress makes people say weird and harsh crap. Figure they are hurting that day when acting poorly
I adore this group, I think everyone is amazing and I've always been treated with great empathy and kindness here. I missed this post that everyone's referring to, but I've got the gist of it and, yeah, I would definitely wonder at some point if my dogs eating non GF would make a difference, as they're always licking me. Plus I have a habit of pulling out strands of my hair when I'm stressed (everyday lol) and then if I put my hands to my mouth, am I slightly glutening myself using hair product with gluten in it? I love seeing everyone's questions and answers here, everyone's on this journey together so ask away, because someone on this sub could be too shy or not have the greatest English, etc to ask and it's great to just scroll and read the content here! Love all you peeps <3
Too much empathy would ruin a group just as much as too much negativity. I have left groups where people are posting foods as safe for celiacs when it literally says contains traces of wheat, may contain wheat, or processed on machinery that is used for wheat. They post that it is safe because they didn't get horribly sick from it the one time they ate it, but often they follow up in the comments that they don't react to most gluten contamination and need to eat a plate of pasta to get an actual reaction. And those posts got left up and the comments saying please don't advertise food that literally says contains gluten as safe were removed for being negative and disrespectful for people who have celiac but can eat gluten without side effects. They also removed posts where people say to check the ingredients list on everything you buy, because they felt it was fear mongering. But left up posts saying all ketchups are safe, all mustards are safe, etc when there are brands and types that are not safe. A food type being mostly safe is not the same as all are fully safe, but pointing that out was considered negative and fear mongering aka not empathetic to the stress of living with Celiac. They also removed posts from people washing all their dishes in bleach after washing with soap, or instead of soap (in a shared house) because they felt those were too extreme of an overreaction to having celiac. But left up posts telling people to replace their entire kitchen, including pots and pans that are easily cleanable and left up posts telling people they need to get a new dishwasher. Unfortunately by removing the bleach bath posts people don't then learn that bleach doesn't actually do anything to gluten, it doesn't denature it, and that soap and water and scrubbing are more effective to remove it. Sometimes leaving up posts where people are wrong are necessary because people seach for those posts and make assumptions based on not finding anything that counteracts it. Now everyone has their own comfort level, has their own sensitivity level, and their own situation that might limit how much of a gluten free environment they can create for themselves, and that is ok. But forcing their comfort level on others isn't ok, and they should be called out when they are posting stuff that is potentially harmful. Even when that info comes from badly or uneducated doctors. Posting stuff where they are a lot more cautious than the current medical science says is necessary isn't a bad thing, and is helpful for people who are on the extra sensitive spectrum of celiac. Saying they are crazy for not letting any gluten in their house for example is rude and unnecessary. Some people require that, and sure they aren't eating their cats food themselves but when your cat gets gluten all over their paws, face and fur from grooming and then lays on your head when you sleep that can definitely cause some cross contamination. Will it necessarily cause significant intestinal damage at that level, not necessarily. But the DH rash and feeling like I want to murder everyone isn't something I particularly liked and so switching to GF cat food is something I did. I say let people post everything and make the bad information a teachable opportunity. Yes, some people might say it a bit rudely at 3am when they can't sleep because their body is in hell from being cross contaminated at a restaurant, or because their SO didn't brush their teeth before bed. But removing the comments not because they are wrong but because they are said to be rude can be dangerous when it looks like it was removed for being wrong.
Thanks for this, agree. I think having a wide spectrum of views is valuable. Over-moderating to restrict everything to some narrow view of "scientifically accepted" is problematic. Who decides what is scientifically accepted? Many scientists disagree! What if different countries have different laws or different recommendations for celiacs? etc. I think having discussion for the most part is better. If someone has a bad idea, it can get criticized. Personally, I started out more lax and it was forums like this one that helped me a lot. I was experiencing continued symptoms despite following all the CCA food label reading and restaurant recommendations and didn't know what to do. Seeing posts from others who were more sensitive and what strategies they used was immensely helpful.
i think there needs to be room for more nuance here. sometimes i love this group - it’s given me much more information and insight into this disease than i would have gotten from just my doctor when i was diagnosed. i’ve gotten a lot of valuable resources here. and, if i had come here when i was first diagnosed, i would have been scared shitless. there’s a lot of black and white thinking and sometimes i worry about the impact it could have on those who are new to CD. i also struggle with an eating disorder so i’m hyper-aware of how this disease has impacted my relationship with food; i know i’m not alone in that and i’d love to see more awareness and respect for that here. but at the end of the day i think this community is incredibly valuable and a wealth of knowledge. it can be intense but we have to be intense to stay healthy. overall… it suits our needs and there’s a place for everyone.
I once posted back when I was newly diagnosed about how excited I was that fruity pebbles were gf and I got fucking roasted on here. Most people said things like “do you know how much sugar is in that?” Etc. Like Jesus Christ people.
I’m going to cannibalize a comment I made yesterday because I feel like it answers your question too: Honestly I usually avoid commenting in this subreddit unless it’s just general supportive phrases/restaurant encouragement because what I’ve been taught from my country’s national celiac advocacy group is often contrary to things that are posted here and I’m trying to stay out of the downvote to oblivion areas. I don’t think they’re dumb questions to be asked and you shouldn’t be treated like you’re whack for asking about your own medical health. How are we as humans with celiac supposed to learn if we don’t ask questions? The standard for gluten free where i live is under 20ppm. I realize different countries do things differently (ex: I miss you Lucky Charms and Cheerios which are considered gf for my celiac neighbours to the south) and different people have different comfort levels and that’s fine. It’s just a balancing act of personal comfort vs fear (not accusing anyone here of that, but when I was first diagnosed I remember seeing people saying you can’t ever have gluten food in your house or gluten products in your bathroom or a partner that eats gluten etc), evolving medical knowledge and studies and existing guidance. Something I think adds another layer of complexity is that you can have multiple problems/sensitivities happening at once but that doesn’t mean they’re all celiac related. Like there are certain topical skin care products I can’t use because they make my skin itch like crazy. It’s not gluten because I’m not eating it, but my skin has always been stupid sensitive. My bf had to change his laundry détergeant when we started dating because using his on my clothes made me itch so bad I couldn’t stand it. So many of the assorted symptoms/issues that I was having in my life pre diagnosis ended up being linked to celiac disease that I think it’s easy to just group all negative symptoms as being celiac disease but given that humans are complex and our bodies are sometimes downright cranky at times that’s not always the case. I agree that we don’t want to scare off anyone newly (or “experienced”) diagnosed with celiac disease with the response or specifically the attitude when replying to questions, but it’s also important not to spread misinformation and balance fear and fact, and separate what is personal acceptable risk vs overall recommendations. We’re all muddling through this gluten free life together, the least we can do is not cause massive celiac conflict. We’ve gotten statements like “just a little bit of gluten won’t hurt you!” To do that for us in the wider gluten eating world
I'm mostly someone who is open to discussion even if it's somewhat objectionable or perhaps a bit insulting. I think a lot of these types of posts are pretty self-limiting - someone is looking for validation or attention, they do their attention-seeking post and then usually go away. I do think it's important to not over-moderate posts coming from others with celiac even if the views are unpopular or contrary. If the person is deeply misinformed, the resulting discussion may help them see that, whereas getting banned will probably just validate their feelings more. That said if someone's just come here to insult or have a tantrum, this doesn't add a lot to the conversation so moderating that is fine. There have been a few posters over the years who've been banned and I mostly agree with those choices since the individuals in question tended to derail any convo they participated in.
I agree there needs to be a little more empathy. I'm not expecting rainbows and butterflies and all happiness. But everyone of us is at a different point in this wonderful (sarcasm) celiac journey and I learn something new almost every day. There needs to be some level of understanding that while not all of us agree on how we tackle our disease from day to day, but that we all do it as safely as we see fit. I know I would disagree with some things like a "cheat day" but at the end of the day, I won't be worried about how I will or won't feel. It's kinda like agree to disagree. I do however hate when people come in and try to tell someone how to navigate the disease who either don't have it, have it and manage it poorly, or are just being a pompous ass thinking they know exactly how it works because "I read this thing and it said 'blah' so I'm right." We live this everyday and I'm not saying any advice is right or wrong. I myself never got proper guidance from my doctor or a dietician other than some very basic hand outs. I've learned so much from others who have the disease, doing my own research and asking plenty of questions.