How Sensitive Is "very Sensetive"?

[caek-is-a-lie]

No no, I get you totally! I can't even eat off a fork that was used to eat cake and then scrubbed with soap and hot water incessantly. Really! I get seizures anyway.

I also got a somewhat snide remark here when I posted about Safeway stocking leaky gluten flour next to leaky gluten-free flour. For me that would be instant poison but for others, no problem. I think any business that wants my money needs to treat gluten like it's rat poison. Luckily, I've found some.

I think it's great if some people can tolerate little crumbs, but I also appreciate it when they understand that I'm super hypersensitive. We all have different levels of gluten intolerance and experiences here and I love it. I look here before I eat because there's such a wealth of knowledge.

[Baillie]

As I was about to respond to the idea of creating a separate thread - a few days ago - I had wireless router problems... However, the issue is still on my mind...

I disagree with all of you who think that you need a separate forum for discussing your sensitivity issues. I've only recently stumbled upon this site [and I am an avid reader of information - celiac and other] and I've learned a great deal in a short time since coming to this site.

I am not 'sensitive'.

I have read enough to know that the relatives that I suspect are celiac, and are not willing to investigate it, are endangering their health regardless of their response to symptoms - obvious or otherwise. They may not have some of the 'obvious' symptoms but they are probably still doing damage.... etc. But do they do anything about it??? No.

Here I am. Pontificating about my extended family. Reservedly pissed off because they all refuse to even investigate their own health issues.... I'm 'gluten-free'... or so I think. Now, because of reading this thread (and a few others), I begin to examine how gluten-free I actually am.

Until I read this thread I did not realize how aware our bodies could be of gluten. I might not be 'sensitive' in terms of perceived symptoms but that does not mean that my body isn't reacting.

I was a late 'bloomer'. A cycling accident triggered the active phase of my disease (I'm 45). However, I can now look back - with hindsight - and see various symptoms of a dormant disease. For example: the time I tried to do a bread and water fast... You all know how that turned out! I couldn't figure out how so many spiritual people could do this when I just ended up with diarrhea and stomach cramps! And I went back to normal when I began eating as usual again. (That was a few years before the accident.)

After reading all your comments... I have to re-examine how I am gluten-free. I am no where near you all in sensitivity. But, I know that my body is reacting in spite of, or regardless of, my mental awareness. I read about how there are worse diseases (and I agree) and that this one is a sort of 'blessing in disguise' [my own term] but, I am very conscious that this autoimmune disease has a very high correlation to a number of other very nasty autoimmune diseases. In itself... that is enough to keep me gluten-free! Not one of them is as easy to manage as this one!

Having read your comments - and I am sorry that others are as dismissive of you as others are of them - I have learned a great deal. I suspect that I am not even close to gluten-free... but I don't have any obvious symptoms. I have begun to re-examine my 'gluten-free' world... ie: the turkey that doesn't have bread stuffing but is handled by the same person who made the breaded stuffing (that would be me) for the rest of the folks - even though it's not cooked inside the turkey.... that should be ok, eh??? [Oh, I just gave away that I'm Canadian!!!]

To all of you who have shared your knowledge of gluten sensitivity, I thank you. You have educated me. Please continue to share your experiences with the rest of us.

Sincerely,

Baillie

[Gentleheart]

Since many of us don't get retested or officially monitored very frequently and some not at all except for their initial "diagnosis" tests (blood, biopsy, stool, etc.), I'm honestly beginning to wonder about some things.

Could it be that we will someday find out that many of us have been far too casual with our dietary habits? Maybe we eliminate the gluten just far enough so we don't "feel" the symptoms anymore. I wonder how many of us are living just below the symptom level of damage and don't know it. I wonder how careful a person would have to be to honestly achieve NO gluten damage and if it can even be done in this modern world? A lot of gluten avoidance is still pure guesswork and hoping you are OK. Hopefully research will someday eliminate that guesswork and turn this into a more exact science.

From recent discussions with other gluten sensitive people, I was surprised to find that many of them are "cheating" occasionally on purpose or at least putting themselves in risky positions to get accidentally glutened on occasion. IF clinical tests have shown that it actually takes about 3 weeks to fully repair the damage from an average glutening episode and let's say the average person thinks a once per month "cheat" is certainly reasonable, can you see the dilemma in that? They are actually in "damage" mode much more than they are in "resting" mode. How will we ever make any headway with that philosophy I wonder?

[MollyBeth]

Okay, I fall under the not very sensitive category. I'm pretty new to this...I haven't even hit the six month mark on the diet yet but here's the deal. It freaks me out that I'm not very sensitive because if I understand this disease correctly even if I don't react damage is still being done. I just want to say that I try my very hardest to keep gluten free and have actually been having a pretty tough time lately trying to figure out how to balance my life. I think making a different category for only the super sensitive is a bad idea. I've learned so much from all the posts on here...even the critical ones.

[caek-is-a-lie]

From recent discussions with other gluten sensitive people, I was surprised to find that many of them are "cheating" occasionally on purpose or at least putting themselves in risky positions to get accidentally glutened on occasion.

Boy, I tell ya, this ain't me. Now, I'm not one of the Celiacs that's been diagnosed with blood test and biopsy. But my symptoms are so severe with the tiniest amount of gluten, my body wouldn't in a million years let me cheat! Heck I ate Ben & Jerry's Cherry Garcia 4 nights ago which even my Dr. says is gluten-free and today I had an id reaction on my finger. No GI or neurological problems, but definitely an id reaction which means it still affected me somewhere. argh how frustrating. And sure maybe it was an accidental crumb I didn't notice somewhere else and not the ice cream but that was the only new thing I ate all day so...who knows. I can't even cheat with "safe" stuff. ugh.

[rumbles]

If this topic doesn't become a new subforum, this thread will

eventually drop to page 2, 3, 4 . . ., and wont' be discovered

until someone stumbles across it again someday and posts.

When I replied to this, it was already at 7th place, - it was

at the top yesterday. For those of us that are very sensitive,

and for those that are wondering if they are gluten free

enough, and those that are still having symptoms after going

gluten free, this info is too important to be allowed to fall off

the visible radar.