What's The Best And Worst About Being Super-Sensitive?

[weluvgators]

She can always talk to me herself in a PM and I will be happy to discuss it with her..

I don't know about others, but I do not have the ability to PM anyone about their comments that concern me . . . Or even if I just want to share something more personal or trivial,. Like even a "thanks". I can either post it openly on the board or remain silent. I find myself often choosing silence, as it often seems the safer of my given options.

[IrishHeart]

You said that you agreed with Gemini who said:

And then goes on to describe how to eat out carefully. Sorry but his statement is NOT true for everyone. It is his experience and he is free to share that but to share that when responding to someone saying they can't eat out is just as invalidating as what you implied Steph was doing IMO. My response was not meant to be angry. I am NOT angry. I am just very hurt that this website that used to be my positive support place has turned into a place where others are not allowed to share their expereiences without being questioned/doubted/told they must be doing somethign wrong. Lately I have noticed more and more posts saying we can't share if a particular gluten-free product makes us sick or if we can't eat at a particualar restaurant. You, IrishHeart, have always been kind and that is why I am so shocked at your hurtful responses above. I understand you didn't mean them to be hurtful but they were. I am not trying to hurt you back. I am tryign to make you understand where the supersupersensitives that post on this board are coming from. Perhaps I am doing it poorly. I apologize as we can't read facial expressions on a forum. But I am not angry. I am heartbroken.

I am sorry you are heartbroken. I am feeling just as bad about being misinterpreted and/or having my experiences in this--and other threads regarding super sensitivity--invalidated.

I have not seen the posts that you mention, so I cannot comment fairly on them. I can only address what I have said here.

I think I DO understand where they are coming from. But that's just it --I am ONE OF "THEM"--the super sensitive celiac. Yet I do not have to take such extreme measures to feel safe --or perhaps my other food intolerances have cleared up?-- and because of that, I feel maybe I am not "qualified to add to the discussion".

It's as if there is an "elitism" going on here.

I want newly DXed people to know that it is possible--even if you are very sensitive to trace gluten--that you can go out to dinner and eat safely and enjoy life without fear.

I have said REPEATEDLY that EVERYONE is different. I never openly stated that anyone was extreme or paranoid or any words that are hurtful.

Again, I took issue with what DilletanteSteph said. If I am wrong, I will apologize to her.

With all due respect, I think that is between her and me.

I think I'm done here. Sorry to the other readers of this thread.

Carry on!

[IrishHeart]

I have to say, when I read Steph's post it came across to me as "I'm more of a victim than you are", which is fine, but I could see how IH would see it as "If you were really super sensitive you wouldn't be able to eat out at all". Maybe she could have chosen her words more carefully, but seriously, Steph is a big girl and she had an issue with IH's (or anyone's) post she's perfectly capable of bringing it up herself. If she says nothing it's hardly fair of other people to assume offense and start defending her in her absence.

Can we please stop with the "I think you offended this other person" posts and just discuss OUR OWN situations?

thank you, JESTGAR.

Yes, that IS how I interpreted her remarks about my post and if I am wrong, DilletanteSteph should tell me. The written word is often open to misinterpretation.

[weluvgators]

The best thing is eating healthier and actually feeling better.

The WORST thing is being openly MOCKED by those less sensitive.

I could not have said it better myself. It really is so nice to know that others can relate to our experiences with living gluten free.

[GlutenFreeManna]

Just to clarifiy I did not mean to imply that Steph was offended. I am not her nor do I know her personally. I meant only to say that I am hurt and offended by the insentivity of others. And that is fitting with this topic as it was asked what is the worst part about being supersentive. In my two years being gluten sensitive this has been the worst thing I have witnessed--other celiacs not showing compassion (not just in this thread but elsewhere) to those MORE sensitive then themselves.

This is important to know.

Since all we have are words on a screen, and no facial expressions, it's easy for eight different people to read a sentence eight different ways.

If something really ranks you, then please either respond in the thread, or hit the report button, and tell us what you see the post as saying. It's the only way we'll know that something was taken amiss by someone else.

So to be clear, are we allowed to say if "eating at such and such a restuarant made me sick"? Or are we allowed to point out that under 20 ppm makes some people sick and certain gluten free products make us sick? Is there a liabiltiy issue with pointing this out and naming company names? Because I have been on this board for almost two years and I only noticed in the last few months that whenever someone posts, "Oh I can't eat _____" there are two or three people pointing out that they are indeed wrong and that most celiacs can eat _____. I find this very counterproductive and demeaning to always be pointing it out. It may be true that most celiacs eat 20 PPm products just fine but how does it help the person with the problem of not being able to eat _____?

[Jestgar]

So to be clear, are we allowed to say if "eating at such and such a restuarant made me sick"? Or are we allowed to point out that under 20 ppm makes some people sick and certain gluten free products make us sick? Is there a liabiltiy issue with pointing this out and naming company names? Because I have been on this board for almost two years and I only noticed in the last few months that whenever someone posts, "Oh I can't eat _____" there are two or three people pointing out that they are indeed wrong and that most celiacs can eat _____. I find this very counterproductive and demeaning to always be pointing it out. It may be true that most celiacs eat 20 PPm products just fine but how does it help the person with the problem of not being able to eat _____?

I think it's perfectly reasonable to share YOUR experiences (or a family member, friend you were with, etc), so yes, if a restaurant made you sick, then feel free to say something, if a product makes you sick, feel free to say something.

I know that some people (mods among them) are worried that new people coming on to look for information will get the impression that NO ONE with celiac disease can eat out, or eat a certain product and they try to post clarifications saying that actually most Celiacs can eat that.

If you EVER feel that one of these response went beyond clarification and into attack, then say something PLEASE. It's easy to get caught up in the emotions and forget that there may be other interpretations.

[GlutenFreeManna]

I think it's perfectly reasonable to share YOUR experiences (or a family member, friend you were with, etc), so yes, if a restaurant made you sick, then feel free to say something, if a product makes you sick, feel free to say something.

I know that some people (mods among them) are worried that new people coming on to look for information will get the impression that NO ONE with celiac disease can eat out, or eat a certain product and they try to post clarifications saying that actually most Celiacs can eat that.

If you EVER feel that one of these response went beyond clarification and into attack, then say something PLEASE. It's easy to get caught up in the emotions and forget that there may be other interpretations.

Thank you. Sorry to ask here, but really quickly and then I will stop. If I report a post does that report go to Admin (Scott) only or does the post go to the entire moderating team? And if the post is modified after I report it will Scott see the original or only the modified version?

[Jestgar]

Thank you. Sorry to ask here, but really quickly and then I will stop. If I report a post does that report go to Admin (Scott) only or does the post go to the entire moderating team? And if the post is modified after I report it will Scott see the original or only the modified version?

A reported post goes to the report center where any mod can choose to look at it. All most of us can do is make it invisible if it is offensive. Posts are rarely ever changed, just removed permanently if it's really bad. Some mildly rude statement by a person who is normally polite will usually result in a pm to that person explaining how the phrase was taken and asking them to change it. Repeated rude statements by one person may result in a warning, or having them put on moderator preview so we have to look at each post they make before approving it.

We don't censor incorrect information, only bad words, rude comments, and spam.

ETA: Someone has to tell us that they found a post offensive, we try very hard not to make the decision ourselves (since anyone can take the written word the wrong way),

[Lisa]

Thank you. Sorry to ask here, but really quickly and then I will stop. If I report a post does that report go to Admin (Scott) only or does the post go to the entire moderating team? And if the post is modified after I report it will Scott see the original or only the modified version?

When a report is made, it is viewed by the entire moderating team, as well as the Administrator. No reported posts are altered in any manner. If you would like to address Scott Adams on a personal level, his e-mail is listed on his profile page.

EDIT: to be clear, the report itself is not altered, the reported post can be change or deleted to comply with the board rules, after review.

[GlutenFreeManna]

A reported post goes to the report center where any mod can choose to look at it. All most of us can do is make it invisible if it is offensive. Posts are rarely ever changed, just removed permanently if it's really bad. Some mildly rude statement by a person who is normally polite will usually result in a pm to that person explaining how the phrase was taken and asking them to change it. Repeated rude statements by one person may result in a warning, or having them put on moderator preview so we have to look at each post they make before approving it.

We don't censor incorrect information, only bad words, rude comments, and spam.

ETA: Someone has to tell us that they found a post offensive, we try very hard not to make the decision ourselves (since anyone can take the written word the wrong way),

Again thank you for your help. I won't reply about this topic in this thread again since it's off topic.

[kareng]

GFM,

I'm not trying to get in a fight here. Just wanted to point something out. There is a difference in saying " I ate off the gluten-free menu at Karen's Diner and I think I got glutened". Or I have a problem with Karen's brand gluten-free frozen dinners. They don't test for gluten or they only test to 20 ppm. " Then saying " X bread ( trusted gluten-free brand that tests extensively) is not gluten free. I don't care what they say. They seem shady to me.".

We have members who come on 1 time or once every 6 weeks implying or out right saying that a company is lying. If we leave this unchallenged, we not only give people looking for answers about a product the wrong idea, we could have a company sue us ( unlikely, but some companies do monitor Internet and send " cease & desist" type letters).

It's certainly OK to point out that a product isn't tested or is tested at 20 ppm. It's OK to say that that level may leave room for gluten that bothers you. It's not OK to say that the company is lying or failing to comply with the law with out proof. When we ask these people to tell us where they heard this info, rarely, if ever, do they respond. They just come back a month later to bash another product.

I have a cold, so I hope this made some sense.

[dilettantesteph]

If I could go to a restaurant when I got sick of preparing foods, I wouldn't have a problem with it. I am too sensitive to be able to do that without getting sick. I think that those of us who would complain about it are those who are too sensitive to be able to go to restaurants also.

I just meant that having to prepare all your own foods is a bother only if you have to prepare all your own foods.

Among super sensitives there is a range of sensitivities just as much as there is anywhere else in the celiac community. I am the first to admit or more accurately tell others about this. So often it is stated, I eat such and such, so it can't be making you sick. That attitude made me stay sick for a long time when I was first diagnosed and I came here for help.

There is also a lot of, I am very sensitive and it doesn't bother me so if it bothers that person there must be something else wrong with them.

I didn't refer to Irishheart in my post and it wasn't directed at her. It was a general statement.

I really am sick of making all my own foods and wish that I could go to a restaurant even occasionally without getting sick.

I often feel hurt and misunderstood by this forum. I keep posting here because I remember what it was like when I was new and trying to figure out what was going on. When I help someone get better it is worth it.

Edited to add: I am in the extremely sensitive range. Typical ceiacs don't have these problems.

[dilettantesteph]

She can always talk to me herself in a PM

It looks like I can't do that. I just tried.

I can't PM you either GlutenFreeManna. Thanks for your understanding. And about some of those questions you asked, I am not allowed to talk about some of those things on this forum.

[IrishHeart]

I didn't refer to Irishheart in my post and it wasn't directed at her. It was a general statement.

Well, because it came right on the heels of my post, it most certainly sounded like a refutation-- and I saw it that way--as did several others.

No one else's post was "remarked upon" by you.

However, since you felt that I have mistaken your intention, I am sorry you felt hurt.

You are not the only one who feels hurt.

I am still reeling from the pounce of the others on your behalf on this thread. Feel a tad beat up, but I'll get over it.

I guess I just do not understand the adversarial/competitive tone that is often taken in so many posts on this forum by some folks --such as the one to the father of the 14- year- old boy?

For example, you stated: " Fellow super sensitives were very helpful. Unfortunately, there are quite a few who make suggestions as super sensitives, who aren't nearly as super sensitive as we are. It takes awhile to figure out who is who."

Who is WE?? and how do you get to decide who is "super super sensitive??" And you suggest that those suggestions by other SSes (your who is who statement) are perhaps "masquerading" as SSes and giving wrong info?? gee, I do not think that is the case. I know I am not! They, like you have every right to state their experiences.

See what I mean?

It's very confusing to new readers.

And to me.

I'm exhausted trying to defend myself when all I did was innocently answer TH's post.

I'll tell you what's hard about being SS -- trying to defend myself as a "fellow SS"--to my "fellow SSes!!...geesh !!

I feel like Rodney King when he asked "can't we all just get along??

I wish you well, as always.

[dilettantesteph]

Who is WE??

I had been talking about my son and I earlier. By "WE" I meant, my son and myself.

and how do you get to decide who is "super super sensitive??"

I was relating our experiences. We were told that something is safe because the person who could eat it was very sensitive. We reacted. I was trying to explain the various levels of sensitivity and how that applies to listening to people about food safety.

[Lisa]

I have often read here that some of our more hyper-sensitive members have other food intolerances. Under those circumstances, I would find it very difficult to dine out. I'm certain, that it's very frustrating, aside from any gluten issues.

I live in a small town and don't dine out for the food, but for the socialization. I eat cleanly (steamed shrimp and broccoli) and have a glass or two of wine and enjoy my neighbors and friends. We did that tonight and it's so much fun to see the college kids home from school as (presumed) adults. AND celebrating an engagement of my daughters best friend.

I think dining out can be achieved, no matter what your sensitivity if you research and choose wisely.

[psawyer]

This has become heated. I have not seen anything that I would classify as an overt "personal attack," although there have been some tests of the rule.

Accusing a member of a personal attack is a sensitive thing, and may, in and of itself, constitute a personal attack on that member.

Everybody, please take a deep breath and hold it for a few seconds before speaking.

There was a comment about expectations for moderators. The forum moderators here are all volunteers, and are participants first and mods second. They are not, as might have been suggested, exempt from the rules--they get absolutely no latitude on the rules, even though we regularly condone minor violations by ordinary members.

I doubt that there is anything left to add to the original poster's idea, as the thread has gone way off the original topic.

[elfie]

I think anyone who is sensitive can go out to eat successfully because there are restaurants who can produce a truly gluten-free meal. I have found that it's basically the more upscale restaurants that you have success with. They have more education and knowledge. It's also prudent to complain so they know all the ins and outs of preparing gluten-free food. This is how celiacs can make their lives more mainstream and be able to go out to eat occasionally.

I don't go out often but have had pretty good success with it. I am very sensitive and have to be extremely careful but have found it can work. You just cannot go out too often....limit the risk. The other issue is that some areas just do not offer much in the way of gluten-free eating. It is not fair but it's reality. To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources.

I have to respectfully disagree with "anyone who is sensitive can go out to eat..." I have eaten at the restaurants that tout gluten free menus that many celiacs of whatever sensitivities recommend and each time I've been glutened. Before anyone says it's another food intolerance, sorry, nope, I know all my food intolerances and everything but gluten is easy to avoid. I don't like having the "flu" for 3 days and fatigue for a week by trying out these places. I expected to be perfectly fine, so it wasn't a matter of me convincing myself I'd be sick either, for any that would suggest that.

I do find this: "To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources." to be a broad negative generalization of people whose experiences don't agree with your own.

I agree with GFM that people who have more visible sensitive reactions are harrassed in this forum, which is why I rarely post though I've been reading for a long time.

This is what I find is the hardest to deal with as a super sensitive--the fact that other celiacs of whatever sensitivities invalidate my experiences just like so many doctors and "regular" people invalidate celiac with "it's just in your head." It's about like what the Puritans who came to America to escape religious persecution did to the Native Americans because they didn't hold the same beliefs.

The best thing I find about having become super sensitive is that I get reactions so that I can work to eliminate the culprits and continue to improve my health after having been misdiagnosed for over 20 years and losing all that time.

[psawyer]

This is what I find is the hardest to deal with as a super sensitive--the fact that other celiacs of whatever sensitivities invalidate my experiences...

Um, let's consider this. Your experiences are your own. Other people, including other people who also have celiac disease, have different experiences. The fact that their experience is different does not in any way "invalidate" your experience.

I have traveled to Alaska. Perhaps you have not. The fact that you have never been to Alaska does not in any way invalidate the fact that I have.

[Jestgar]

I have to respectfully disagree with "anyone who is sensitive can go out to eat..." I have eaten at the restaurants that tout gluten free menus that many celiacs of whatever sensitivities recommend and each time I've been glutened.

I'm gonna back up Gemini here...

I wouldn't eat somewhere with a "gluten free menu" because that seems to me a place that has a staff that follows directions and doesn't think. A higher scale place with staff trained to listen, or a local place that knows you can provide a perfectly safe meal. The wait staff at my favorite local Mexican place can rattle off the ingredients of everything they make. They have few dishes that use flour and tend to keep those separate (for their convenience). A local burger joint advertised gluten-free buns so I went there and asked for one. Without even asking the counter person said "the fries are cooked with the onion rings so you might want to avoid those".

(no high end restaurant examples 'cause I'm too cheap )

[Lisa]

I have to respectfully disagree with "anyone who is sensitive can go out to eat..." I have eaten at the restaurants that tout gluten free menus that many celiacs of whatever sensitivities recommend and each time I've been glutened. Before anyone says it's another food intolerance, sorry, nope, I know all my food intolerances and everything but gluten is easy to avoid. I don't like having the "flu" for 3 days and fatigue for a week by trying out these places. I expected to be perfectly fine, so it wasn't a matter of me convincing myself I'd be sick either, for any that would suggest that.

I do find this: "To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources." to be a broad negative generalization of people whose experiences don't agree with your own.

I agree with GFM that people who have more visible sensitive reactions are harrassed in this forum, which is why I rarely post though I've been reading for a long time.

This is what I find is the hardest to deal with as a super sensitive--the fact that other celiacs of whatever sensitivities invalidate my experiences just like so many doctors and "regular" people invalidate celiac with "it's just in your head." It's about like what the Puritans who came to America to escape religious persecution did to the Native Americans because they didn't hold the same beliefs.

The best thing I find about having become super sensitive is that I get reactions so that I can work to eliminate the culprits and continue to improve my health after having been misdiagnosed for over 20 years and losing all that time.

Elf, I understand what you are saying, but I don't see the harassment that you speak of. I see members who might be a bit skeptical, perhaps.

Let me be honest... I am a member of several forums (meaning several). I see the same people who discuss their severe multiple food intolerance on different forums, yet come here and only discuss gluten as their only hyper sensitively issue.

I know that there are many people who have hypersensitivity to gluten and living with that, no doubt must be a struggle. Many of us have struggled for many years, I'm glad you are on your road to recovery.

[IrishHeart]

Elf, I understand what you are saying, but I don't see the harassment that you speak of. I see members who might be a bit skeptical, perhaps.

And on that wise and neutral observation, I think this discussion has run it's course.