Omg...i Might Be On To Something

[miamia]

Thanks Patti, Julie and Rachel. I don't mind the silliness of it all, it helps me too, but I don't want to see this thread shut down...it has helped me so much as well.

i wrote this before too and I again just want tot say this thread has been so helpful to me. We are all dealing with so much negative so if we get silly from time to time its healthy!!! WE all need that break. But most of the time the things we discuss pertain to real health issues. So many of us have dealt with so many doctors, nutritionists, done so much research and still are sick this is a place were we can come were we don't - or at least i don't feel crazy. It is a safe place and an informative place. I feel like theier are alot of us who would really suffer from not having it.

Miamia

[rinne]

Personally I am of the evolution school, I am continually astonished by how helpful this thread is to me. I have learned so many things here, one that comes to mind is the problems with our earings, a shared reaction many of us have to being glutened. Who would have thought and who would have created a whole thread to discuss it and yet here it arose naturally. I am nurtured by the care I receive here and I too feel protective of Rachelville. I am also happy to have new folks arrive to stay or just drop by.

Thank you to everyone for your comments and to Simply V for bringing this up. I hope you will continue to drop by and that eventually, sooner rather than later, Rachel's answers will be of help to you.

[eKatherine]

Personally, I think it would be better if topics could be spun off into their own threads. I'm sure there are readers out there who are not aware that the major current topic in this thread is mercury amalgam poisoning, and would not think to look in a thread with a title about dairy consumption.

[Rachel--24]

Personally, I think it would be better if topics could be spun off into their own threads. I'm sure there are readers out there who are not aware that the major current topic in this thread is mercury amalgam poisoning, and would not think to look in a thread with a title about dairy consumption.

In some cases that might be true but for people like us who are very ill with numerous intolerances and symptoms the subject changes constantly as we work our way through a bunch of different issues. If we started a seperate thread for each thing discussed....there would be dozens of threads and alot of info. thats pertinent to the people on this thread would be missed because it would be scattered all over the board.

If I could change the title to something else now I would...but 5 months ago when I started this topic I had no idea it would end up here....on the subject of amalgam illness.

I actually had just thought maybe I was corn intolerant and could eat dairy again.

Well...I kind of didnt hear the receptionist who reshceduled my appointment due to the fact that I think I was kind of numb from having heard my Lyme results. I called today and its on Monday...so not much longer to wait.

[DingoGirl]

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

Been pondering things.....I have learned SO much here, and I don't think we've "devolved" - - although, that is a word I have used before in this thread, as in, "devolved into lunacy" but I used it as a joke.

I've never been on any forum in my life, so this was all new to me - as was Celiac, of course. This forum has been so helpful to me - but this particular THREAD is the FIRST thread where I felt I connected with people, and made friends, people that I would actually look up if I were in those parts, and people I'd welcome into my home if they traveled through here (well, unless some of you are actually psychos in prison and posing as mid-western housewives ). I have learned SO much here, and even the things that don't apply to me directly are quite interesting to me still, and sometimes apply to others in my life. I never knew about large produce and auxigro, didn't really know about MSG, symptoms of lyme, all the intolerances and the low-histamine diet, water filters, so many things.

Now, I come here to check in, keep up with people's lives, and get a little silly.....it's been a fun and safe place "where everybody knows your name" and knows the struggle, and sometimes we ARE just goofy, and that's okay too....I happen to be interested in amalgam issues, have thought about this much in the past and never pursued it - now Rachel's my guinea pig! (Donna, too!)

I don't have any epiphanic words or major insight....or, if I did, I've now forgotten them all....as the dingos stare and await their walk.

as far as certain topics requiring their own threads - well, part of the charm of this place is that it just goes where it goes.....like a natural conversation, and it just evolves.

that's it.....see ya!

[AndreaB]

Rachel and Susan,

Well said.

Susan,

Have fun on your walk. I'll look on the other thread for hair updates.

Rachel,

Monday! That's real close!

[Mtndog]

I don't always post on this thread, but i read it every day. I have learned so much about everything from dairy to food processing, lyme disease to thyroid, mercury to corn. This thread is a wealth of information and a good rule of thumb is NEVER EVER lose your sense of humor.

I've been rooting for Rachel and Donna and Patti and Susie and Vincent and everyone else who feels horrible every day. Because I've been there and I'm still in the process of figuring out what's going on with me from gluten to legumes to mold. Since I moved out of my apt. I've been feeling much better, but I still have 1-2 crappy days a week that I can't explain and reading this thread has helped me consider so much. I have never seen such a community of shared knowledge and experiences. And COMPASSIONATE support.

I think the problem is that we can't (can I use we even though I don't post here that often?) support every issue in the world. If someone lost their job, it wouldn't really make sense for people to spend pages brainstorming for them. Of course, if they lost their job due to celiac or a related problem, then it would make sense. I am all for free speech and seeking support, but I think the topic has to be relevant to the board somehow. Just my 2 cents.

[Rachel--24]

I've never been on any forum in my life, so this was all new to me - as was Celiac, of course. This forum has been so helpful to me - but this particular THREAD is the FIRST thread where I felt I connected with people, and made friends, people that I would actually look up if I were in those parts, and people I'd welcome into my home if they traveled through here (well, unless some of you are actually psychos in prison and posing as mid-western housewives ).

Susan...I was touched by your post. Its the same for me...I connected with people on this thread. I'd been on a few boards before this one and I'd been around on this board for quite some time before I started this particular thread. Nobody had ever really identified with my symptoms before....or if they had they didnt post about it....not until this thread. All of a sudden I wasnt alone in this anymore and here was this group of wonderful and caring individuals who were here to stick it out with me. Its probably been the best thing thats happened to me since I got sick like this. The support here is amazing.

I'm not sure where you were when we talked about the earrings....maybe you had nuggeted yourself and were delirious during that time??

I think it may have come up back when I had become obssessed with Edward and Sons brown rice crackers. Anyways I kept getting reactions and everytime I had a bad one my ears would start getting infected. All of a sudden my gold earrings would cause the infection but any other time they didnt bother me at all. I posted about it and almost everyone here was saying they were experiencing the same thing when glutened....but noone had really linked it to that.

I dont know if my reactions were from gluten but the crackers had that CYA label on them. They were manufactured on equipment with wheat. I havent eaten those crackers in awhile now and my ears have been fine. I think it could happen from other bad reactions as well....not just gluten.

Anyways, it was one of those things that just popped up in conversation...who knew we'd all been experiencing it.

Tonight I bought 2 pints of ice cream (yup I'm still on a binge) and then some ice cream BARS!! Yeah....I'm probably getting even more carried away but I just wanted them really bad.

I miss ice cream sandwiches....they were one of my favorites but of course the sandwich part always has gluten so I cant get them.

They had these bars...some of them were the "sandwich" kind and some just had a chocolate coating. I checked out the ingredients and there were only like 5 ingredients and they looked alright so I bought the bars. As soon as I got in my car I opened one and was eating it....sooo yummy. Stopped at a light....still happily eating my ice cream bar (I did get a tiny reaction but not big enough to make me stop) and I started reading the box...it had an allergen warning. It said it had milk, eggs and soy products in it. I already knew it had eggs and obviously dairy but didnt see anything to indicate soy. 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!!

I'm always so careful about ingredients and here I was eating something and I had no idea all this other stuff was in it. I almost started crying thinking something bad might happen.

So far nothing outside of the normal reactions I live with everyday...nothing too terrible but I'm not gonna eat anymore until this one is totally out of my system. Its not something I can Rachel...thats for sure. I'd be in big trouble if I ate the whole box.

This was kind of funny....

My mom (who most of you know reads the board) asked me the other day who the new babies are. I had no clue what she was talking about and I told her so.

She said "Well I read on a thread awhile ago that you guys were gonna try harder to help out the new babies on the message board....so who are the new babies?"

I said "Newbies???....Are you talking about NEWBIES???

OMG...it was the funniest thing!!

And whats even funnier is that she's STILL asking about the NEW BABIES!!

I guess its stuck in her head or something.

[VydorScope]

Many ppl saying stuff about spliting thread, moving thread, deleting posts etc...

Threads wander, its the nature of the medium. Forcefull control and threats kills usefullness, and shows ppl they are unwanted. In contrast, gentle corrections and guidence stimulates focus and creates a wecloming atmosphere.

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...

I've been rooting for Rachel and Donna and Patti and Susie and Vincent and everyone else who feels horrible every day. Because I've been there and I'm still in the process of figuring out what's going on with me from gluten to legumes to mold. Since I moved out of my apt. I've been feeling much better, but I still have 1-2 crappy days a week that I can't explain and reading this thread has helped me consider so much. I have never seen such a community of shared knowledge and experiences. And COMPASSIONATE support.

Mtndog,

Thanks for routing for me, but do not worry for me, I fortunitly have a strong support group with my wife, nieghbors and church. I'll continue to seek my answers, but not here. Here I will be the best helper I can be when I can, and a silent supporter when I can not.

Rach,

I hate to say it... but I am routing for you to test postive for mercury posioning, so that you can get better finaly. Did you say how long it would take to start to get better once you start treatment? I have a hard time following log posts/threads so I think I must have missed it, sorry.

*hugs to all*

[evie]

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

Been pondering things.....I have learned SO much here, and I don't think we've "devolved" - - although, that is a word I have used before in this thread, as in, "devolved into lunacy" but I used it as a joke.

I've never been on any forum in my life, so this was all new to me - as was Celiac, of course. This forum has been so helpful to me - but this particular THREAD is the FIRST thread where I felt I connected with people, and made friends, people that I would actually look up if I were in those parts, and people I'd welcome into my home if they traveled through here (well, unless some of you are actually psychos in prison and posing as mid-western housewives ). I have learned SO much here, and even the things that don't apply to me directly are quite interesting to me still, and sometimes apply to others in my life. I never knew about large produce and auxigro, didn't really know about MSG, symptoms of lyme, all the intolerances and the low-histamine diet, water filters, so many things.

Now, I come here to check in, keep up with people's lives, and get a little silly.....it's been a fun and safe place "where everybody knows your name" and knows the struggle, and sometimes we ARE just goofy, and that's okay too....I happen to be interested in amalgam issues, have thought about this much in the past and never pursued it - now Rachel's my guinea pig! (Donna, too!) Quote..

First forum here too..have learned so much and feel a kinship to you searching people like me. We do have to have a joke once in awhile, helps the learning process. I have learned so much here and still learning from rest of you, do not post often but lurking around and soaking up info. this is possible thanks to Scott for making a place for us to share.

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

[Rachel--24]

Rach,

I hate to say it... but I am routing for you to test postive for mercury posioning, so that you can get better finaly. Did you say how long it would take to start to get better once you start treatment? I have a hard time following log posts/threads so I think I must have missed it, sorry.

Thanks Vincent

I hope I test positive too for the same reason. I dont know how long it would take to get better...it would depend on how bad I was poisened and how good my body is at detoxing. It could take a couple years though. I dont really care if it takes that long or even longer as long as I'm actively doing something to get better and its working. So far I've had no treatment except for the diet stuff that I do on my own.

I'm not sure where the quote came from in your post?? As far as splitting the thread or deleting posts or changing it into something other than what it is...I'm against it. To do that would be like saying we've done something wrong here and I dont have that feeling at all...I think we've done something good.

Evie....I hope you can figure out where the gluten is coming from. Are you still feeling glutened?? I'm wondering why the Dr. felt you're still getting some?

I had no idea amalgam removal was illegal in some states.....never heard of this?? Why is it illegal??

[VydorScope]

I'm not sure where the quote came from in your post?? As far as splitting the thread or deleting posts or changing it into something other than what it is...I'm against it. To do that would be like saying we've done something wrong here and I dont have that feeling at all...I think we've done something good.

Sorry it was a paraphrase of what some ppl had commented on, not a direct quote. Was trying to not single anyone out and aviod the unintentional appearence of going on the attack by staying general.

I think all the talk about [insert silly stuff here] is good for the thread, as it helps keep the thread alive while waiting for test results and helps ppl cope with bad news.

[Rachel--24]

Sorry it was a paraphrase of what some ppl had commented on, not a direct quote. Was trying to not single anyone out and aviod the unintentional appearence of going on the attack by staying general.

I think all the talk about [insert silly stuff here] is good for the thread, as it helps keep the thread alive while waiting for test results and helps ppl cope with bad news.

I totally agree....would this even be the same place if we didnt get silly now and then?? Theres only so much I can say about mercury in one day and I think it might get a little depressing around here if all we talked about was the bad stuff.

[happygirl]

x

[AndreaB]

Evie,

Please keep us posted on your possible glutening. Did you doctor say why he thought you were getting glutened?

Laura,

Wow, you've gone through a lot.

Would you have any reason to suspect lyme or mercury toxicity? Leaky gut could play a part in your intolerances. Do you take any meds? They could be problematic. Do you react to all pectins? Have you checked out Ursala's link? I don't have any answers.....just throwing things out there.

[DingoGirl]

I think all the talk about [insert silly stuff here] is good for the thread, as it helps keep the thread alive while waiting for test results and helps ppl cope with bad news.

that's for sure!

Evie - DO keep us posted, so sorry you're not feeling well....

Hi Laura! Glad you popped in. WE have many detectives here and people who have been through SO much...

at the risk of being flogged I"ll ask the question, have you been tested for Lyme (although, from what we're hearing and reading here, there's only one lab that is totally accurate in testing)? I am so sorry for all you're going through, you actually sound like Rachel, our founder, and many others here....all searching for answers and here for support.

Everyone? some scientificness for Laura? (uh, that's what we call it when we have scientific stuff and informative "lectures"

[AndreaB]

Laura,

I posted above in case you didn't see it.

Love your new pic!

[Daxin]

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.

[Rachel--24]

Hi Laura,

You do sound alot like me with all the sensitivities. Do you eat processed foods? For me eliminating particular foods like eggs or dairy or corn or even all of them at once never worked and I still felt bad. In my case it seems to be more related to chemicals. I dont eat processed food...except for organic ice cream which you will soon notice I cant give up....for anything.

I eat organic foods only now. I seem to have multiple chemical sensitivity so I just plain react to all chemicals everywhere. Some things I'm sure of are the pesticides in produce and other foods, sulfites, msg and salicylates. They all seem to bother me but I cant avoid everything or I'll starve. Instead I eat the stuff that gives me the least reaction and not too much of anything in any one of those chemical groups. I'm never free of symptoms and I've tried every diet imagineable so I just do what works best for me right now.

I'm not trying to figure out which foods bother me anymore...been there, done that. Everything bothers me. I'm mainly focusing on why this is happening and how can I fix it. I suspect mercury toxicity...already had Lyme disease ruled out but they can both cause these types of issues.

Do you keep food journals? This was something I did for a long time and it really helped me to figure some things out.....I tend to forget stuff fast so having the journals can be so helpful. Leaky gut is probably part of the problem but if Celiac isnt causing it....something else might be. All the mainstream doctors arent really helpful in this area....I wasted alot of time with them. I didnt really get anywhere with alternative doctors either. I like the doctors who are knowledgeable in both areas....a combination of the two.

Have you tried a very simple caveman type diet?? That means no processed foods....just meats, veggies, fruits....you know...all the boring but healthy stuff.

I would start out simple, keep a journal, add things in slowly and stay away from processed stuff for awhile...see how you feel. You may be already doing something like this....but just in case you're not.

I lost alot of weight too...and I had real bad malabsorption on my enterolab results. I had already been off gluten though and the weight loss was still a problem....it didnt have anything to do with gluten at that point.

For some reason when I eat the things my body doesnt seem to be processing well....like salicylates, msg, all the chemicals...I lose weight...fast. Even if I'm eating foods that would normally put weight on. Example...I always react to avocados and yams (could be salicylates or something else)....if I were to eat these everyday by the end of one week I may have lost 10 lbs...just like that. For a long time I was under 100 lbs. because of that...it was only about 6 months ago (when I started this thread) that I started figuring things out and since then I've gained about 15 lbs. back and have been able to maintain it.

Its hard figuring this stuff out and it takes a good amount of time but if you get strict with your diet and yet still seem to be gaining more intolerances I would suspect something else going on.

Its probably dumb to ask and from the sound of your post it seems like you've been actively trying to figure things out so I'm sure you've already made sure you're not getting gluten in somewhere. Just throwing that out there too.

Glad you joined in and hopefully you'll get something from the people here that will help you out in some way.

Goodnight all....I've been late to bed every night this week.

[AndreaB]

Ryan,

Good to see you. Your little girl is cute.....how old is she? How have you been doing?

[Simply-V]

These questions are mainly for Laura & Rachel.. but I'm told several of you others have similar symptoms.

I suffered with a lot of this for years, searched for answers and got little help (well if you can call being called a hypocondriac and being constantly offered antidepressants as help).

The following are all things I was tested for, and can contribute to these types of problems.

(Celiac, of course.)

Thyroid

Diabetes/PCOS

Viral load.. My alt. doc tested my viral levels for several things such as Epstien Barr, Herpes, Mono virus, and some others. I guess high levels of reactions to these can tax the body and cause all kinds of problems. He prescribes Valtrex to lower the viral levels. Or thats my understanding of it.

Parasitic activity

I was also tested for metals and mercury toxicity.

Now, I was negative to everything (cept one doc said I have PCOS due to bad cholesterol levels, which I think was caused by some malabsorbtion problems not actual PCOS).

I've also had extensive ELISA and IgE testing done. Which was the most helpful of anything.

Anyway, for me, it seems to all revolve around my corn allergy and avoiding the minute amounts of it (which is nearly impossible). I still have bouts of problems, but those can usually be traced to me eating something questionable.

Any I thought I'd mention these tests that may you would find helpful? That is if you havent already had them.

[eKatherine]

In some cases that might be true but for people like us who are very ill with numerous intolerances and symptoms the subject changes constantly as we work our way through a bunch of different issues. If we started a seperate thread for each thing discussed....there would be dozens of threads and alot of info. thats pertinent to the people on this thread would be missed because it would be scattered all over the board.

This is true, there would be numerous threads, and all of the information would be available to anybody who wanted to read it. Now it is lost in the middle of this thread. Even if you were to change the title, it could never give any indication of what the whole thread is about.

[rinne]

I love this thread, it is extraordinary in its' ability to create community for those who want it.

I grew up with a mother who was ill, for nearly forty years doctors have been telling her they can't find anything wrong, she has had nearly every possible test and they have never found the cause. She went through years of being treated as if she was a hypochondriac and offered anti-depressants too, she told the doctor, "I've got enough problems without taking those".

I think that when you are ill in this way, ill in a way that runs below the radar of all the western testing and you are being told there is nothing wrong it can make you feel crazy, I suspect that those who take the medication pushed on them may react to it and suffer further "craziness". This thread is a place where we know our craziness is not the problem. It's been a home to many of us who don't fit neatly in some box that says Celiac. I know now how bad gluten is for me and I won't consume it again and I also know that I have other problems. When I first went gluten free I had some relief of my symptoms and then when I went dairy free many more symptoms resolved and I felt I was on the right track and my digestion improved and the malabsorption diminished and it seemed I was getting better but then the pain flared in my spine and then in the tissue wrapping round my torso and I knew that was not gluten intolerance. I have a long list of symptoms which could be Lyme disease and given my proximity to a known tick location, a rash and the progression of symptoms that is the diagnosis I am looking at. But. I am open to heavy metals, pesticide poisoning, hormonal imbalances....

Thank you to everyone for speaking up, such beautiful and eloquent voices, thank you Rachel for responding to Susan's question about the earings.

Love and Blessings, R.

[Rachel--24]

This is true, there would be numerous threads, and all of the information would be available to anybody who wanted to read it. Now it is lost in the middle of this thread. Even if you were to change the title, it could never give any indication of what the whole thread is about.

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.

If someone were doing a search on any of the numerous topics we've discussed here they would find this thread and quite possibly they would learn other things that they may have not even considered before. Going off into a bunch of seperate threads would negate the purpose of what we've been doing here....which is working together to regain our health. Yes, there are numerous topics discussed here...thats because we have numerous intolerances and issues we deal with everyday....no single food elimination or single treatment is going to be enough to get the people here well again. There are multiple issues involved and we discuss all of them. We are all different.....if one food such as soy were the culprit we could find lots of threads addressing this on the board.

I believe this is the first thread addressing multiple intolerances which alot of people are dealing with but werent able to get any answers or support for. We found those things here.

[Rachel--24]

(Celiac, of course.)

Thyroid

Diabetes/PCOS

Viral load.. My alt. doc tested my viral levels for several things such as Epstien Barr, Herpes, Mono virus, and some others. I guess high levels of reactions to these can tax the body and cause all kinds of problems. He prescribes Valtrex to lower the viral levels. Or thats my understanding of it.

Parasitic activity

I was also tested for metals and mercury toxicity.

I've also had extensive ELISA and IgE testing done. Which was the most helpful of anything.

I had every test done that you've listed....plus a whole lot more. The most recent was the one for all types of viruses and bacterias that could possibly be taxing the immune system. The Lyme bug was actually included in that test and was negative but obviously Igenix is the more appropriate method of testing for that.

I had tests for heavy metals as well...but these tests arent really useful for detecting toxic levels of mercury from amalgams.

Been tested for parasites and bacteria several times.

Had ELISA IgG and IgE testing done....I had NO intolerances/allergies (except banana and some spices on the very low end) I've also had traditional allergy testing....all negative.

Diabetes....was tested about 3 times in the first year

Thyroid....I have Graves Disease so my thyroid is tested quite frequently

I've had MRI on the brain, CT scans, endless bloodwork, tests for all sorts of autoimmunity problems. All is normal outside of the thyroid (which was ablated in 2003).

Basically everythings been ruled out which is why Dr.'s are finally willing to listen about the mercury toxicity possibilty.

I feel pretty good about having crossed out all the other possibilities. I do have one ovarian cyst which was found several months ago...its gotten smaller and smaller and its obviously not the cause of all my problems. Other than the one cyst I seem to be perfect...yet I'm not.