Omg...i Might Be On To Something

[Simply-V]

The point is that we have brainstormed here....put our heads together and worked through things to help one another. That wouldnt have happened had there been dozens of seperate threads. For example...there is a thread on mercury toxicity started by someone recently...its not even on the "active" pages anymore and barely has any posts on it. Its already pretty much lost. In comparison you can see that this thread has remained active for a very long time and if you read the last few pages you can see that that people here have considered it a lifesaver...including myself.

I think what eKatherine is trying to say is that this thread is nearly impossible to follow and find any of that information which those of you who have been on this thread since its birth found "lifesaving".

This has become a community thread. A home for those with similar woes to come and commiserate. Which there is nothing wrong with that.

But the helpful info is getting lost in the mix for anyone not paying daily attention to this thread. I found this thread through a search which pinpointed me to a post someone wrote in the very begining. It took me days to figure out that it would just be easier to ask whats going on, rather than read the.. what is it now? 6.000 posts?

In my mind there is nothing wrong with everyone grouping here and lending support, as we all need a place to call home, esp. for those of us who don't have local people who get it.

But I wouldn't call this thread informative. Its mostly social.

[happygirl]

x

[Rachel--24]

I think what eKatherine is trying to say is that this thread is nearly impossible to follow and find any of that information which those of you who have been on this thread since its birth found "lifesaving".

This has become a community thread. A home for those with similar woes to come and commiserate. Which there is nothing wrong with that.

But the helpful info is getting lost in the mix for anyone not paying daily attention to this thread. I found this thread through a search which pinpointed me to a post someone wrote in the very begining. It took me days to figure out that it would just be easier to ask whats going on, rather than read the.. what is it now? 6.000 posts?

In my mind there is nothing wrong with everyone grouping here and lending support, as we all need a place to call home, esp. for those of us who don't have local people who get it.

But I wouldn't call this thread informative. Its mostly social.

As someone who has contributed endless hours of research to this thread....I kind of resent your statement. To YOU it may not be helpful but obviously to alot of others it has been. I generally dont hang out on threads that arent beneficial to me or that I'm not learning something from so I'm guessing that you must be getting something out of this thread??

If I was interested in simply socializing I would be spending all my time on the Rachelville thread since thats the intended purpose of that thread. I spend my time here because I'm actively involved in my health issues.

Youre right...many people dont have time in their lives to follow a thread on a daily basis but to me and to alot of others here....our health is that important...and yeah...I'll continue to come here until I get an answer. For someone just passing by....this thread isnt going to be of much help.

I'm sorry that newcomers arent able to find all the info they're looking for but its all there if you do a search. I dont have any trouble following the thread as I visit it everyday. The discussions evolve into different topics and if you choose to visit once a month and expect to catch up on everything then yeah....it can be overwhelming. Do you suggest we stop posting our many ideas because some people simply cant keep up??

Also I spent several months on this board before this thread ever existed...I had started several threads on all sorts of different topics. It became obvious to some people that I had lots of health issues and was undergoing lots of testing. Some people became interested in all that I was going through. Some people said it was hard to keep up with what was going on with me and it would be nice if there was one place with all the info. Coincidently this sort of became that place and for the people who wanna know...the information is there for them.

Its almost ludacris for someone to pop in and say...WOW...I dont have time to read all that you've written so this thread doesnt have any valuable information. I dont feel like going back and reading through what you people have gone through or discovered about your health issues so I'm just gonna go to the last page and say...."You guys havent helped me because theres just too much info."

Its kind of like picking up a book and then not wanting to actually read it....just expecting to skim a few pages and "get" the whole thing....its not realistic.

There are some people here who have taken the time to read the entire thread even though they joined in much later...others have just gotten a "general" understanding of what the threads about and have just jumped in. I will never understand people who dislike something about a thread or dont agree with its direction or topic but yet hang around to bring in negativity.

I'm sorry that you are "lost" now but thats simply because you dont spend much time on this board....not because the info's not avavilable to you.

[dlp252]

Premature posting:

what is this about earrings? rinne? I must have missed that part....

Yes, quite a few of us have discovered that we can no longer wear earrings, and some can't wear any type of metal jewelry. I can still wear bracelets just fine, but necklaces will bother me after a while...I start scratching at the back of my neck within just an hour or two. I can't wear any type of earring for longer than an hour or two...even gold. Used to be that I couldn't wear cheap fake earrings, then I couldn't wear sterling, and now can't wear 14kt gold...my ears start to weep within an hour or two and I get cyst-like things in the pierced holes...odd, but while discussing that one day, we determined that a lot of us have some sort of sensitivity to metals, which at least in my case seems to be getting progressively worse as time goes on. Someone suggested trying 24kt gold, which if I can ever afford, I may, lol.

I truely hope Rachel and Donna and Patti and Susie and everyone else does find solutions, and gets better, and to that end I will always strive to help...

...

*hugs to all*

Thanks Vincent...do wish you'd hang around though.

Today I had a check up with my GI and he thinks I am still getting gluten, but not know how that could be, got a bit more testing done. Will go back next month for another test then will not go back for another year.

Good news but need to go thru foods/ fine tooth comb for gluten or ?? Long way there so really stocked up @ New Pioneer Foods.

The amalgram story has been very interesting but removal is not allowed in our state or next state where my dentist is and I may have health problems not allowing that anyway. I wish you who are working on that much luck and will keep on listening. Thankful for new cyber friends.. evie

Oh Evie, hope you can pinpoint where the gluten is coming from, if that really is what is happening. Could it be cross-contamination like with a toaster or other appliance or utensils perhaps?

I also had no idea it was illegal to remove amalgam some places, WOW! I have lots of questions to ask when I see this new guy...I did read somewhere...one of Rachel's posts, one of the websites she listed, or somewhere that one can sometimes expect to be sicker once removal starts (or something like that...I have a terrible memory for what I read). That scares me, lol.

(can I use we even though I don't post here that often?)

Sure you can silly, lol!

Rachel- put down that ice cream and back away! Don't make me hurt you, lol!

[CarlaB]

I kept staring at it and then finally I saw that the ingredients I'd looked at were only for the "inside" of the bar....there was a whole other list for the "outside!!

This same thing happened to me!!! Do you remember? I posted it, I think on this thread. The ingredient list just said "ingredients" which was for the rice cream (I guess that's what you'd call it ), the it said "cookie ingredients", and I was sure none of the cookie was in my mouth (I had the first bite in my mouth when I re-read the ingredients), so I wasn't too worried even though it had wheat and oats, then as the chocolate was melting in my mouth, I read those ingredients ... the first one was barley!! I spit it out, ran to the restroom (in a health food store) and started washing out my mouth. I've been so sick anyway, I can't really tell if I reacted or not. But I was rather upset about it.

In my case, if they had better labeled the rice cream ingredients as "ingredients -- ice cream:", I would have seen it, but only the cookie and chocolate were labeled clearly.

[dlp252]

I also want to add that I feel somewhat connected to all of you here, and will offer what support I can.

You've all been supportive to me as I am relatively new to the Celiac thing. I wouldn't've been able to cope with a LOT of this with out Rachelville (both threads)

Thanks again.

Rach -- I hope you know one way or the other soon enough what you are going to be dealing with.

BTW the new avatar is my daughter Tasmin.

Tasmin is adorable!!!

[CarlaB]

Laura, I really think this new doctor who is educated in all the inter-related issues is going to be a huge help for you. My doc says that when you have a leaky gut, many foods are going to cause problems. She has me eating meat, eggs, veggies, and no more than one piece of fruit per day (because of the sugar). I am allowed 2 starchy carbs. No processed food (I eat gluten-free bread), no sugar, no caffeine or coffee, no alcohol, no juice. It's very boring, but I'm having NO digestive issues at all. Now, my only problem is fatigue and lack of stamina. There is literally no way I could hold a job right now, in fact, my husband gets on my case if I waste any energy cleaning the house (I asked for a housekeeper, he said I have 5 of them -- the kids who are still home). Doc says that it will take a year, that the supplements, the sauna (hubby bought me one!!), and the diet, along with rest and low stress, mild exercise (walking, yoga) will detox my system and heal my gut. She is also concerned with my mercury level, but even more so, my aluminum level (so much for all the great gluten-free uses of FOIL!! ).

She said that just as I didn't get sick all of a sudden, rather I felt good, then bad, then good, until I eventually felt bad more than good ... that in the same way I will heal till I'm eventually having more good days than bad. She said in two years she fully expects me to all of a sudden realize I'm eating out and not getting glutened because when my gut is healed I won't be so hyper-sensitive, not that I'll be able to eat wheat, just that contamination won't get me like it does now. I will be interested to see if she's correct. However, I will be perfectly satisfied if in two years I just think, "Wow, it's been a LONG time since I've felt bad."

[happygirl]

x

[Green12]

Welcome Laura,

Sounds like you are struggling with a lot of the same things like many of us here are. I hope you will join us, maybe we can figure this all out together

I have also been tested and tested for all kinds of things, viral load, parasites, candida, diabetes/blood sugar issues, thyroid abnormalities, heavy metals, food/chemical/environmental allergies............

Hi Ryan, good to see you. Your daughter is so cute Love her name too, very unique!

[happygirl]

x

[dlp252]

Julie,

x

I have had digestive problems most of my life. As a baby I got eczema if I had wheat...but seemed to outgrow that. I think I really started my down hill slide about 10 years ago...I had a lot of dental work done around that time (mostly replacing old fillings and such). I don't know if the dental work started all the issues, or maybe just contributed. Anyway, I started getting frequent respiratory problems...like recurrent chronic bronchitis...then started getting allergies (not hayfever, just lots of congestion, etc.). In 2001 I had major surgery, which really kicked things into high gear apparently because after that, I was sick nearly continuously with sinus infections, bronchitis, whatever, from 2001 to December of last year. I suspected wheat was a problem and had followed a low carb diet, but not knowing about gluten, still consumed it in some of the low carb products I was eating. Finally, my allergist suggested I follow an anti-candida, anti-yeast, lower-carb rotation diet to see if food intolerances were adding to my problems...he had already did trials with me to see if candida and/or thyroid was a problem, but those didn't help much. I followed that diet for six months (it coincidentally was almost entirely gluten-free because it was all non-processed foods) and wasn't sick once...then I took a cruise last year...during the first week I was good and stuck to basically meat, veggies and fruit...but during the second week I started taking bites of bread, pastas, etc. and by the end of the week was eating full servings of them. I gained 10 pounds almost overnight from the bloat. When I got back home, I quickly got back on the diet, but couldn't seem to stay away from the bread...about 3 weeks after returning home and eating the gluteny stuff I got sick...first with strep throat, then with ear infection and then sinus infection followed by a cold. I was sick for nearly a month and a half and was on antibiotics that entire time. It finally clicked with me that gluten was an issue...so I ordered the Enterolab testing stuff. Turns out I am definitely intolerant to gluten and to casein. Since cutting those out I haven't had a single infection! Amazing...it's been a year now.

However, I still have lingering issues...abdominal pain, sometimes severe fatigue, heart burn, dizzyness, low blood pressure, rapid heart beat, nervousness and low body temperature are just to name a few. I've been tested via skin scratch tests for food and environmental allergies and have been receiving treatment for the environmental allergies for nearly 3 year (allergy shots). I've had numerous blood tests, but all have been done by mainstream doctors, so they really only run the most "usual" stuff...not really an indepth tests. I am currently suspecting that mercury might be an issue with me because nearly every tooth in my head has something going on with it. I have 5 gold crowns and am getting a sixth one (porcelain hopefully) on Monday...all of the crowns are in contact with amalgam fillings or are next to teeth with fillings which I understand is a particularly bad combo. I have been to 3 doctors about the dizzyness and low blood pressure/rapid heart beat thing, but all insist I am healthy. So here I am, trying to figure out why.

[AndreaB]

x

[rinne]

Open Original Shared Link

Found this site which looks interesting and may be of some help.

[rinne]

Andrea, yes I am in Canada but I was in southeastern Colorado nearly four years ago when I had the rash from a tick bite, it was after that that my health started to really go downhill. I also remember a bite/rash in California twenty years ago and have recently learned that my home town is a hot spot for Lyme. My mother has all my symptoms and more as do two of my brothers and two of my sisters. I have learned that it is possible that my mother had Lyme and passed it to all of us, there are seven of us altogether and although five of us are currently ill to extremely ill, the other two are not really healthy either.

Lyme is complicated and the co-infections add to the confusion. It is my feeling that it was a co-infection that I got in Colorado and that that tipped the balance in regards to my health.

I checked the site out and they don't mention Igenex as a lab they use although it is possible they didn't list all of them.

[Rachel--24]

Hi everyone....

I'm still having alot of mixed emotions about my upcoming doctor appt...anxiety, excitement, a little fear, impatience...all that stuff. I've been feeling the ups and downs alot since my initial appt and waiting for the Lyme results.

To be honest...some of the drama thats taken over this thread in recent days has added to my stress level. I'm just feeling pretty wiped out and I think I really need a break from it for awhile.

My priority in all of this is my health and happiness...I try to avoid anything that takes away from these two things. I just know what my body can handle right now and stress, drama or negativity arent on that list.

In the past week I havent felt that happy to come on here like I have in the past....I think I was actually dreading it. I've never really felt like that about this thread up until now.

Some people are obviously having issues with the length of this thread. With my upcoming appt., treatments and all of the stuff I'll be covering with my new doc I have no doubt that if I post it all its gonna lead to alot more pages.

I've posted *everything* I've done or discussed with my doctors here for the past 6 months and if you take a look at the number of people and posts here on this thread....you'll see that I'm first on the list...with the highest amount of posts. My reasons for posting everything was not only for the support I got here but also for the conversations that developed from them and also in the hopes that people in the future will benefit from some of it.

The reasons for so many different topics is because I've went through alot from colonoscopy, to ultrasounds, to ovarian cyts, to Auxigro in produce, learning about MSG, learning about corn, trying this diet and that diet, getting tested for parasites, getting tested for Lyme, a new medication for healing leaky gut, mercury toxicity and the list goes on.

There is no way that I'm gonna start a new thread everytime my doctor tells me something new or I get more test results or I find something that works for me...etc...it would be WAY more confusing in my opinion.

I think the best thing for me to do at this point is to NOT have to come on here and defend this thread and the reasons behind its existence everytime I sign on. I think I would like to take a break and be more of a quiet observer....like Vincent.

Also without all of my posts the thread wont be so "overwhelming" for some people and maybe it will be easier to follow.

When things are going smoothly and "on topic" all it takes is one or two people to take away from that and then it will take some time to get "back on track" and to get the thread to where its comfortable to post again. At least for me...its that way. I dont do well with having bouts of controversy and drama at a time in my life when I'm struggling on a daily basis. I want to be surrounded by positive things right now....thats why I came to this thread everyday for the past 6 months. When that changes I lose my desire to come here and its sad for me but like I said...my health comes first.

As Vincent pointed out....threads take on a life of their own. However, when it no longer serves the purpose that it once did in your life..you can also make the choice to no longer participate. I guess thats the choice I'm making now....at least for awhile.

The other thing that has troubled me is the talk of deleting posts in the thread because its "too long" or because some of the posts are "not that helpful". I dont think its right to go through ANY thread (no matter the length of it) and scrutinize the posts of others deciding which are good enough to stay and which arent.

Its one thing for Scott to delete posts which are in direct violation of the board rules but its something else entirely to pick and choose which posts can stay in a thread simply because the thread has grown to be several hundred pages long. I dont feel any of us has the right to say which posts "belong" and which ones dont. That just doesnt sit well with me at all....that added to the other drama surrounding this thread in the past week is not leaving me with a very good feeling about it.

If we were to start censoring this thread or any of the other threads on this board in that manner then I have to say....the day that that starts happening will be the day that I no longer remain a moderator here... I'm that much against it.

If anyone wants to know about what happens with my Dr. appt. I'll be happy to share in pm's. Those of you who have supported me from the beginning (or the middle)....you know who you are and of course I would never leave you hanging.

I'm just not gonna discuss my personal saga publicly anymore as it will only dramatically lengthen this thread. Personally, I felt its better to have the info here (even if it has to be waded through) then to not have the info. at all....but apparantly others disagree.

I'll still be an avid reader and will still post when I feel I can contribute. I'll still be on the board daily....just not so much on this thread. Maybe I'll be goofing off on the Rville thread.....God knows I can use the laughs right now.

Oh...can I join in on the 40's thread even though I'm not quite there yet??

It seems to be the serious health related threads that are turning ugly and its no wonder there are so many threads having to do with nothing....they are much more enjoyable to partake in. Thats probably where I'll be spending most of my time on the board while I de-stress and detox.

I care about everyone here and hope to continue our friendships even if I dont post as often.

[happygirl]

x

[VydorScope]

Rach, you have to do what you feel is best for you,but I personaly think you should post your test results and keep this thread going. If the thread is to long for the complainers, they will fade out as it gets longer

Do whatyou need to for your self, but I would hate to see you loose this thread over a few complaints. Ingore them, and stick with the ppl here that care about you!

[lonewolf]

Oh...can I join in on the 40's thread even though I'm not quite there yet??

You'd be very welcome! We'll just consider you an "ish". (You know, like 40-ish.)

[evie]

Premature posting:

Yes, quite a few of us have discovered that we can no longer wear earrings, and some can't wear any type of metal jewelry. I can still wear bracelets just fine, but necklaces will bother me after a while...I start scratching at the back of my neck within just an hour or two. I can't wear any type of earring for longer than an hour or two...even gold. Used to be that I couldn't wear cheap fake earrings, then I couldn't wear sterling, and now can't wear 14kt gold...my ears start to weep within an hour or two and I get cyst-like things in the pierced holes...odd, but while discussing that one day, we determined that a lot of us have some sort of sensitivity to metals, which at least in my case seems to be getting progressively worse as time goes on. Someone suggested trying 24kt gold, which if I can ever afford, I may, lol.

Thanks Vincent...do wish you'd hang around though.

Oh Evie, hope you can pinpoint where the gluten is coming from, if that really is what is happening. Could it be cross-contamination like with a toaster or other appliance or utensils perhaps?

quote

I am really not sure it IS gluten, hubby eats so little of it but I could be getting it from cleaning up couters and such, will try to be more careful. I do have my own toaster and do not eat alternate breads very often but do eat sub hot ceral some mornings. My thi nking is that I may be getting intolerant to more foods that are bring on the cramping & such. So will be watching for that and gluten even more strictly. thankful is not an everyday thing but more often that I like.

Hubby is real good about getting his own breakfast & sometimes other meals but I need to be more watchful about how he cleans utensils. Having a good day today, resting up from Wed Dr. trip, will take an extra nap!

Hope all are improved. Best to Rachel as she gets better and makes up her mind on how much she participates here. We like you hee but you have to do what is best for you. evie

[AndreaB]

Rachel,

I agree with Vincent's post.

This too will die down.

Come on over to the 40 thread. You don't have to be in the forties.....there are women below and above that.......and then their is Richard who just can't help dropping in once in awhile.

[TriticusToxicum]

Come on over to the 40 thread. You don't have to be in the forties.....there are women below and above that.......and then their is Richard who just can't help dropping in once in awhile.

They won't even let me be an "ISH"

[CarlaB]

They won't even let me be an "ISH"

Yea, you're a forty-ish, girl-ish!!

Rachel, you know, no one who doesn't like this thread is forced to read it .... Don't let certain circumstances push you out. Take a break, for sure, but when you feel ready, come back. I took a two day break myself. It even got too heated for me.

[dlp252]

Rachel, I personally don't want you to stop posting, but definitely understand needing a break...I took a few days myself a month or so ago...if you decide to stop posting (hoping hoping hoping you don't) please definitely PM me the results...in fact PM me anytime you want.

Oh, and I post on the 40-ish thread and I'm actually 50-ish!

[Simply-V]

As someone who has contributed endless hours of research to this thread....I kind of resent your statement. To YOU it may not be helpful but obviously to alot of others it has been. I generally dont hang out on threads that arent beneficial to me or that I'm not learning something from so I'm guessing that you must be getting something out of this thread??

I'm sorry that you are "lost" now but thats simply because you dont spend much time on this board....not because the info's not avavilable to you.

Rachel, chill.

1. What I said in no way invalidates this thread.

2. Wasn't meant to demean you.

3. Isn't an attack on you.

I was just stating that I understand where eKatherine was coming from.

I put in the hours to get to understand things on this thread and I make an effort to check this daily. Thats my choice.

But for a lot of people, that isn't an option. And actually until a few days ago, there really wasn't that much talk about anything here for at least a week. As everyone was waiting for your test results.

Rachel, I like ya. Got no problems with this thread as it is. Please stop taking things so personally when its not personal. Just others perceptions.

[Mtndog]

Rachel, chill.

1. What I said in no way invalidates this thread.

2. Wasn't meant to demean you.

3. Isn't an attack on you.

I was just stating that I understand where eKatherine was coming from.

I put in the hours to get to understand things on this thread and I make an effort to check this daily. Thats my choice.

But for a lot of people, that isn't an option. And actually until a few days ago, there really wasn't that much talk about anything here for at least a week. As everyone was waiting for your test results.

Rachel, I like ya. Got no problems with this thread as it is. Please stop taking things so personally when its not personal. Just others perceptions.

Uhmm. speaking in Rachel's defense, if I may, telling her to chill isn't exactly the kindest way to go about things. Rachel is and has been under stress for a very long time (as I'm sure you know) and for her this thread is personal because of the way it has evolved. It's not just about serious health issues but about supporting people who are REALLY struggling with their health through humor, laughter and jokes and camraderie. I think if people are overwhelmed by the thread, they can pick and choose what they read or not read at all.

Rachel, I'm sorry but I felt the need to defend you and others who have gained so much from this thread.