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

[T.H.]

Sharing time again!

Since you've figured out that you're a super-sensitive celiac, what are some of the best and the worst things about living with this issue?

As an example, for me, one of the best things has been that now that I have to pay so much attention to my food, I eat much healthier than I used to (former fast foodie of doom, LOL). The results are good with regards to my own health, but I'm really noticing the effects on my kids. They have such versatile tastes in food compared to how I was as a kid, and they are much, much healthier in their eating habits. It's been really great to see that.

One of the worst, at least for me, is the time factor. I wish I enjoyed cooking more, but I really don't, so spending so much time on cooking food from scratch honestly feels like I'm wasting my time on something I don't like, when I wish I was doing something else.

How about ya'll? What's the good and bad in your lives when it comes to super-sensitivity?

[dilettantesteph]

I have to agree with you. The time factor is tough, but eating more healthy is great. As for the kids, they don't even have fast food and sugar cravings since they never really got all that used to it. How many teenagers actually like broccoli?

I could live quite easily with all that. The biggest problem is other peoples gluten and how hard it can be to avoid it.

[Korwyn]

This is interesting question! (+1) I never thought about an upside to being super sensitive. I like these kinds of challenges to my thinking habits.

So...one positive thing that I can think of is that I don't seem to agonize as much as some people do over "can/should I risk trying this or not?". It is produced in a shared facility or shared house (gluten-free with non-gluten-free family living/eating there) I don't eat it. If I have a question about it, I generally just don't eat it. So really the only time I worry much about it is if I'm eating out.

I don't each much processed food at all, but one down side is actually the flip side of the above. When I do want processed foods (crackers, cereal, snacks, etc.), a lot of the resources others can eat from (Trader Joe's, Whole Foods) aren't accessible to me. So I have a much more limited availability of commercially prepared and packaged 'snack foods'.

[IrishHeart]

I have to say that I don't really notice that I spend more time prep-wise or at the grocery store or farmer's markets at all. Not anymore anyway, since I learned the ropes.

Plain, pure, whole foods are easy.

I do admit that I spend more time ADAPTING recipes. But I think that part is fun and creative. (it wasn't when I was still quite ill and incapacitated from the celiac) and could barely use my arms to shop, slice and dice.

But now, all in all, I would say the best thing about super sensitive is it reinforced my ability to scrutinize ingredients.

The down side came last week when I was reassured that the flourless cake I was eating at an upscale restaurant was gluten-free. It wasn't.... Turns out, it was likely CCed in the bakery where it was prepared.) I paid for that ONE indulgence IN A YEAR---for 12 days after...

Live and learn--and the chef apologized profusely and asked me many questions about celiac and he learned a thing or two or three about CC from me. While he and his staff are adept at gluten-free food prep, from the way he described their approaches in their kitchen area, the cake was prepared off-premises ---and NOW he understands why that is a problem. It was removed from the menu.

He has offered to prepare a special dinner for us. and asked me to come in the kitchen to meet him and his staff and see what they are doing to keep it safe for all people with food intolerances. I thought he was very gracious.

Back on the Upside!!

[Joe0123]

There's nothing good about being super sensitive.

[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.

Edited to add: I am in the extremely sensitive range. Typical celiacs can eat in restaurants.

[Gemini]

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 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.

[IrishHeart]

I could not possibly add anything more to GEMINI's wise response, because it is exactly the way I look at this whole thing, except this:

With all due respect, I am not going to argue about "who is more sensitive" with you. You do not live in my shoes. You don't know anything about me. But you often contradict things I say when I try to post in this section.

I am not sure why you do that?

But you're right, apparently, no one is as super sensitive as you are.

I do not live my life in a bubble. I choose to go out and enjoy life. I spent enough time in the house, crippled from UnDXed celiac for too long.

I am very cautious with my food preparation and I have recovered from being deathly ill and in chronic burning pain from Celiac. Sicker than you can possibly imagine. I saved my own life.

If I get hit from CC because I make a mistake, then I accept the consequences. It's not going to stop me from eating out once and awhile. It's not going to make me miserable and fearful.

I am very sensitive to gluten and react quickly and violently, but I'll be damned if I am going to be paranoid about it. That's no way to live.

This is a forum to express thoughts and personal experiences and I was merely expressing mine in answer to TH's question.

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

[GFreeMO]

I would eat out if I could find something gluten, casein and soy free. I have gotten sick on every single "gluten free" menu out there. Most things have soy or corn or nuts.

The upside to being super sensitive is shopping the outer isles of the store. It takes me no time at all. I am also eating healthier than everyone that I know and I have become quite the chef!

The downside - There are no gluten free cookies that taste worth a damn that don't have soy or nuts in them. I react to almost all processed gluten free foods b/c of my other intolerances so I eat nothing processed which is really hard sometimes.

[mushroom]

I would say the upside to being gluten intolerant, period, is quicker shopping *so long as* the store places any processed gluten free food one might choose to try in a separate gluten free section. Some Whole Foods stores have gluten-free items spread all over the store to make you walk through the whole place instead of around the edges and to the gluten-free aisle

And I agree about the eating out with multiple intolerances. It is hard enough trying to figure out if the place can do gluten free, before you start figuring out how to keep out the corn, the legumes, the unmentioned tomato, the squeeze of lemon juice (or the whole wedge plonked on top of your salmon!) and the soy bean oil. Neverthless, I can and do eat out occasionally. Not always successfully, but often enough....

[ciamarie]

The downside - There are no gluten free cookies that taste worth a damn that don't have soy or nuts in them. I react to almost all processed gluten free foods b/c of my other intolerances so I eat nothing processed which is really hard sometimes.

Does xanthan gum count? Pamela's cookies don't have corn or soy, at least the mini ginger snap ones I have. I love those... they do have xanthan gum though.

And to answer the original question - the biggest downside for me right now is I'm still trying to figure out what's safe for me to eat. I've finally decided I probably have to give up coffee, too.

On the upside, gosh it's such a shame that I have to stick with pure maple syrup if I have pancakes or french toast! (gluten-free of course!)

[Oscar]

If there is a common understanding here, it is that sensitivity levels vary. Steph and Shauna are at one extreme end of the scale. Their experiences are their own, and may not be applicable to the majority of us.

I was very sick for years, and had Marsh IV villous atrophy. I have since recovered completely, and more recent tests show intact villi. I have had no celiac disease symptoms for years. I eat in restaurants from time to time, and seem to survive. I eat "processed" foods from trusted manufacturers, including, but not limited to, Kraft, General Mills, Uniliver and Con Agra. I seem to survive. I eat meat, without worrying about what the animal ate. I seem to survive.

I eat fresh produce--haven't we gone on and on about "whole foods"--without worrying about whether manure from grain-fed cattle was used as fertilizer. If the manure was getting into the food, it would NOT be just the 1% of us with celiac disease that would be affected--there would be a widespread outbreak of e-coli poisoning. I seem to be able to thrive on the fresh produce I buy--horrors--at the supermarket.

Grouching session over, for now.

[mushroom]

Gosh, Oscar, you really are a grouch!!! Who mentioned anything about manure in this thread? Okay, so you have recovered. That is great! Most people do eventually; some take longer than others.

[Jestgar]

I eat "processed" foods from trusted manufacturers, including, but not limited to, Kraft, General Mills, Uniliver and Con Agra. I seem to survive.

hmmm...I eat essentially no processed foods - they all make me ill. It has nothing to do with gluten (for me), but I think my body just hates all the chemicals.

As for the good and the bad - I love my new awareness of what I put in my body, I hate how much time it takes to prepare every frickin' thing I eat.

[Cathey]

It is when we stop searching the food isle we become ignorant. There is so much more for us in those isle than 30 years ago. Seek and we shall find. Fresh is better, yes it takes more time but with a little planning the family eats better. Network locally, I found a great local Bistro and had my first gluten-free pizza last week it was great. Did I throw out my own gluten-free pizza twice yeah... It all comes in time. Will I go to our favorite restaurants yes, now no way. All comes in time.

[T.H.]

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.

[GlutenFreeManna]

The best thing is eating healthier and actually feeling better.

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

[domesticactivist]

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.

[Roda]

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.

[IrishHeart]

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??

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.

[GlutenFreeManna]

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.

[IrishHeart]

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.

[GlutenFreeManna]

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.

[Jestgar]

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?

[Jestgar]

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.