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


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46 replies to this topic

#16 T.H.

 
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Posted 20 December 2011 - 09:09 PM

IrishHeart, I can appreciate that you did feel like your experience was being invalidated, which is very frustrating. I know most of us here have had someone, or many someone's, tell us that we're crazy, paranoid, or flat out wrong in what we feel and what we notice about our own experiences. We all know how upsetting that can be.

I'll admit I was really surprised by your response, though, because my own interpretation of the comment in question was very different: that DilettanteSteph thought people who complained about excessive time to prepare food were too sensitive to eat at restaurants, too. I just thought it was an opinion about why some people might complain about prep time, because they couldn't eat out.

I guess I'm having a hard time seeing how her comment was trying to invalidate your own experience. I just saw her as saying that there are different experiences, different levels of sensitivity. Not a contest of sensitivity, just a mention of differences. As you said, none of us live in one another's shoes, none of us know what we've each had to do to get where we are now. I agree 100%.

However, I wouldn't think most of us are trying to judge each other on what our bodies have gone through, or continue to go through, or how sensitive we are, or how many other issues we have on top of celiac disease. We just share what we've been through, how we're feeling about it all, and hope we can help each other out, yeah?

I never really thought who reacts to what amount of gluten is important in any sense other than being helpful to know who has similar tolerance levels. Nice to keep track of what methods and foods work for super-sensitives who we know react in similar ways to ourselves, you know? Kind of like getting to know people who have similar allergies, so we can discover solutions and pitfalls they already know.

The differences don't add or detract value, they're just differences. At least, that's the way I see it.



I think I was so shocked by your response to DilettanteSteph because it felt overly harsh. I might have been surprised by 'don't invalidate my experience. It's ticking me off,' simply because I didn't take it the same way. But I would have understood what you were feeling and expected DilettanteSteph to respond. However, comments like, 'But you're right, apparently, no one is as super sensitive as you are' are very uncomfortable to read. Felt like a personal attack had suddenly entered the conversation where I hadn't seen one before. I understand that you feel a personal attack was already there, but coming from a moderator, a comment like this feels very intimidating to read.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#17 GlutenFreeManna

 
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Posted 20 December 2011 - 09:49 PM

The best thing is eating healthier and actually feeling better.

The WORST thing is being openly MOCKED by those less sensitive.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#18 domesticactivist

 
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Posted 20 December 2011 - 09:58 PM

I don't know if my son counts as super sensitive but he definitely reacts to cc.
Anyway, the best thing has been that since he does get sick from cc he is actually very serious about staying gluten free, and the people around us believe it.
Worst thing is, of course, the kid getting sick, and not being able to get an official diagnosis because of it.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#19 Roda

 
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Posted 20 December 2011 - 10:13 PM

The best thing is eating healthier and actually feeling better.

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

I agree with this. Those who post on here that are supersensitive will add that they are in the minority and that their reactions are not typical.

I'm not sure where I fall on the sensitivity spectrum, but I have had to eliminate a lot of gluten free items because of bad reactions to small amounts of gluten free oat CC. Smaller amounts of gluten CC get me now also. When I'm stumped I tend to look to the more super sensitives on this board to help me with ideas and places to look for problems. Some of the suggestions may not help but a lot have. It's nice to have a different perspective. So I guess I want to thank the supersensitives for being open and talking about it.
  • 3

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#20 IrishHeart

 
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Posted 21 December 2011 - 07:35 AM

IrishHeart, I can appreciate that you did feel like your experience was being invalidated, which is very frustrating. I know most of us here have had someone, or many someone's, tell us that we're crazy, paranoid, or flat out wrong in what we feel and what we notice about our own experiences. We all know how upsetting that can be.

I'll admit I was really surprised by your response, though, because my own interpretation of the comment in question was very different: that DilettanteSteph thought people who complained about excessive time to prepare food were too sensitive to eat at restaurants, too. I just thought it was an opinion about why some people might complain about prep time, because they couldn't eat out.

I guess I'm having a hard time seeing how her comment was trying to invalidate your own experience. I just saw her as saying that there are different experiences, different levels of sensitivity. Not a contest of sensitivity, just a mention of differences. As you said, none of us live in one another's shoes, none of us know what we've each had to do to get where we are now. I agree 100%.

However, I wouldn't think most of us are trying to judge each other on what our bodies have gone through, or continue to go through, or how sensitive we are, or how many other issues we have on top of celiac disease. We just share what we've been through, how we're feeling about it all, and hope we can help each other out, yeah?

I never really thought who reacts to what amount of gluten is important in any sense other than being helpful to know who has similar tolerance levels. Nice to keep track of what methods and foods work for super-sensitives who we know react in similar ways to ourselves, you know? Kind of like getting to know people who have similar allergies, so we can discover solutions and pitfalls they already know.

The differences don't add or detract value, they're just differences. At least, that's the way I see it.



I think I was so shocked by your response to DilettanteSteph because it felt overly harsh. I might have been surprised by 'don't invalidate my experience. It's ticking me off,' simply because I didn't take it the same way. But I would have understood what you were feeling and expected DilettanteSteph to respond. However, comments like, 'But you're right, apparently, no one is as super sensitive as you are' are very uncomfortable to read. Felt like a personal attack had suddenly entered the conversation where I hadn't seen one before. I understand that you feel a personal attack was already there, but coming from a moderator, a comment like this feels very intimidating to read.



Well, you can use all the inflammatory phrases you wish to make my post seem more offensive than it was intended (shocked, uncomfortable, attack, intimidating) ---but my words were not used as an attack.
It was a defense.

You readily admit that you see why I felt attacked and have the right to respond, however-- you do not allow me the right to respond --- because of my recent appointment as a moderator?? :blink:

What I said is MY opinion as a person and a member of this forum, not as a moderator. All I did was relate my experiences.

And I am deeply offended that you brought that up --- to suggest I have done something inappropriate because of that position.

Honestly, I am shocked that you have made this more than it is. I honestly feel I have nothing to apologize for, but if DilettanteSteph feels that way, I am very sorry.

She can always talk to me herself in a PM and I will be happy to discuss it with her. I think I am an extremely reasonable person (and she knows this from a past encounter in a thread--as I believe she thanked me for my kindness? ) and the people who know me well enough on this site also know I choose my words very carefully when I post and I try to express my thoughts with compassion and understanding--always. And if I am in error, I will humbly apologize.

Honestly, though---I admit that I feel intimidated when I try to post in this section because invariably, what I say is invalidated because it is not in accord with what is deemed by some people as "super sensitive" enough.

Eventually, it becomes pointless for me to try and share.

I innocently posted my thoughts as a member of this forum in answer to your question.

Not only was my post marked as -1 initially by someone, for reasons I do not understand--- as I am not sure how it was deemed not "helpful" because it was only my experiences I was relating??-- but it was immediately challenged by DilletanteSteph. As she has done in prior posts.

Really, just arguing for the sake of argument is counter-productive, don't you think?

I am not one to argue about what needs to be done to keep foods safe for consumption for any individual. I take my own precautions to stay well and I respect that whatever you all need to do is your business.

I just think that in the interests of the COMMUNITY of readers, we should make them aware that experiences vary.

But frankly, I feel as if there is an exclusivity about super -sensitivity to gluten that some people are trying to promote--- and only the people who go to EXTRAORDINARY lengths to live safely are allowed to express an opinion in this section.

Just my humble opinion--as IH--not a title or a position. Just me.
Submitted with all due respect.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 GlutenFreeManna

 
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Posted 21 December 2011 - 08:00 AM

You do not have the right to negate my experiences and I respectfully ask you to please stop doing that.


I understand that you felt she was attacking you but are you not doing the same thing to her by invalidating HER experience of not being able to safely eat out? She should be able to share that without being attacked and put down and told in effect--"oh you could eat out if your were really careful". No. Some of us can't eat out. I didn't see anything attacking in Steph's post. I saw it as her trying to clarify why some people get tired of preparing all their own food--they can't eat out-- but your post was very hurtful, in my opinion. It's amazing to me that you don't see this. I'm NOT as sensitive as Steph and TH and yet I see them constantly harrassed on this forum for sharing what their life is like as super-super sensitives. They have NEVER claimed their responses are typical. They have NEVER claimed that ALL celiacs should have to live like they do. What I see is people reaching out hoping for some empathy or a chance to share their stories in hopes it might help the small number of supersensitives, and they just get slapped time and time again for it. It's for this reason I have not been around this forum a lot lately. I'll probably be banned or repprimanded for posting this but it's how I feel. <_<
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#22 IrishHeart

 
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Posted 21 December 2011 - 08:10 AM

She should be able to share that without being attacked and put down and told in effect--"oh you could eat out if your were really careful".


Sorry, but I never said those words. I never even implied them. Please do not put words in my mouth.

I have never openly attacked anyone --in fact, I try to temper remarks of those who are critical because I feel bad when anyone is not treated kindly --and I certainly have never said a word to you about anything regarding the topic of super sensitivity.

Wow, I have always been kind to you, GFManna, so I am very surprised by your angry response to me.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#23 GlutenFreeManna

 
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Posted 21 December 2011 - 08:32 AM

Sorry, but I never said those words. I never even implied them. Please do not put words in my mouth.

I have never openly attacked anyone --in fact, I try to temper remarks of those who are critical because I feel bad when anyone is not treated kindly --and I certainly have never said a word to you about anything regarding the topic of super sensitivity.

Wow, I have always been kind to you, GFManna, so I am very surprised by your angry response to me.


You said that you agreed with Gemini who said:

I think anyone who is sensitive can go out to eat successfully because there are restaurants who can produce a truly gluten-free meal.


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. :(
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#24 Jestgar

 
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Posted 21 December 2011 - 08:37 AM

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?
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#25 Jestgar

 
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Posted 21 December 2011 - 08:42 AM

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.

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.
  • 2
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#26 weluvgators

 
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Posted 21 December 2011 - 08:50 AM

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.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#27 IrishHeart

 
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Posted 21 December 2011 - 08:51 AM

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!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 IrishHeart

 
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Posted 21 December 2011 - 08:52 AM

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.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 weluvgators

 
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Posted 21 December 2011 - 08:53 AM

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.
  • 2
My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#30 GlutenFreeManna

 
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Posted 21 December 2011 - 08:59 AM

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 _____?
  • 1
A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)




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