Omg...i Might Be On To Something

[Rachel--24]

Ok....enough goofing off.....must go find links for Rpm now.

[confused]

Omg, hubby is going to be so amazed when he comes home. The whole house is spotless, all laundry is done and dinner will be done by the time he walks in the door. I cant remember the last time this has happened.

Im thinking the arsenic is leaving my body and im returning to the person i once was. I know i said this after the mold was gone and after the soy was gone and after............

I have also decided im going to go back and read all 2000 plus pages sometime in the near future lol.

paula

[rinne]

Dear Everyone,

I am caught up! I have been reading along. I am going to try a new supplement soon. It is scary, but must be tried! If you do not make an effort, then you will never know. Perhaps I should have tried it with those cheese-flavored Lay's Stax I just devoured half a tube or so of.

I tried eating vinegar again lately, and paid dearly for it. ....

EEK!

Hi Jin

As Rachel says I am crazy busy with my restaurant and though I don't feel a hundred percent, still some digestion issues, I am up and running seven days a week and have been for nearly three months. Sometimes it is overwhelming and I think about quitting and then something wonderful happens and I know I am in the right place.

Rinne's been here. She pops in and out...she's busy with her restaraunt and with eating all of her Rinne bars.

...

Yup.

Omg, hubby is going to be so amazed when he comes home. The whole house is spotless, all laundry is done and dinner will be done by the time he walks in the door. I cant remember the last time this has happened.

Im thinking the arsenic is leaving my body and im returning to the person i once was. I know i said this after the mold was gone and after the soy was gone and after............

I have also decided im going to go back and read all 2000 plus pages sometime in the near future lol.

paula

That's wonderful that you are feeling well and good reading.

[Guest tamedandfoxed]

update:

finished the antibiotic today. the infection hasnt' changed. maybe worse. i also started the other drug which is supposed to help. but it gives me terrible dry mouth, makes me irrationally agitated and pretty depressed.. i'm going to call the dr back tomorrow but i'm pretty blue about the whole situation. feel like i'll never feel normal again..

Katy

[Rachel--24]

I have also decided im going to go back and read all 2000 plus pages sometime in the near future lol.

OMG....are you sure that you're OK Paula??

[Rachel--24]

finished the antibiotic today. the infection hasnt' changed. maybe worse. i also started the other drug which is supposed to help. but it gives me terrible dry mouth, makes me irrationally agitated and pretty depressed.. i'm going to call the dr back tomorrow but i'm pretty blue about the whole situation. feel like i'll never feel normal again..

Katy,

Dont give up...hang in there. You'll get this figured out.

Is the Dr. "guessing" about the infection?? Have you had any tests run??

[confused]

OMG....are you sure that you're OK Paula??

Are you sure you want me to answer that lol I think you already know the answer.

I am just going to read, I hope i dont start quoting things tho lol

paula

[Rachel--24]

Rpm,

Let me know if you have problems opening these links. I dunno....I couldnt open them on my home computer but having no problems right now. I hope you can view them because I cannot copy and paste them.

Gut and Psychology Syndrome by Dr Campbell-McBride

Open Original Shared Link

Illness and Gut Dysbiosis (bad bacteria, including yeast)

This one is an interview with Dr. Shaw (Great Plains Lab). He's the one that developed the OAT. The metabolites he discusses are the same ones I was just tested for.

Open Original Shared Link

Heres a brief explanation of the connection between gut/brain.

Open Original Shared Link

I'll still be looking more into this.

Anyways, the reason I feel the gut is connected to your issues is because of the very high anti-gliadin antibodies you had. You were experiencing these symptoms while continuing to cause damage to the gut because you were unaware of the postive Celiac results (thanks to this idiot doctor!).

Did you ever take antibiotics?? I'm sure I must have asked you this before but I cant remember whether you had or hadnt.

It would have been nice if the Dr. had made you aware of the positive test results and sent you to the GI for an endoscopy......while you were still on gluten.

Did you read through my posts in that Glutenease thread?? I posted alot of info about the causes for lack of healing after gluten is removed from the diet. This can happen to anyone who has additional underlying issues....Celiac or non-celiac.

Gluten may be just one layer of the problem. If the other problems are contributing greatly to your overall symtpoms (and it appears that they are) you would not have significant improvement even after implementing the diet changes.

However, I do think its *very* important to maintain the diet given the positive antibodies...and I would also remain casein free. I havent gotten back to you on that last pm....but even if you havent dramatically improved after removing casein...I still feel its best to avoid it right now. You also didnt experience drastic improvement after removing gluten but you *clearly* need to be on the gluten-free diet.

Can you discuss those positive lab results with a knowledgeable Dr.??

I'm curious about antibiotic useage though??

I think you probably have gut issues....but Lyme is still another bug that can be messing with your mind like this. So dont forget about that one.

[Rachel--24]

Are you sure you want me to answer that lol I think you already know the answer.

I am just going to read, I hope i dont start quoting things tho lol

Go for it Paula! Feel free to quote whatever you like.

Theres some crazy stuff back in the pages of summer 2006....it was quite the party!

[Rachel--24]

Kassandra,

You might want to look at this link about the dysbiosis problems.

Open Original Shared Link

It talks about iron deficiency as a result of damaged glut flora. Certain pathogenic bacteria in the gut are "iron-loving". They can consume the iron which you take in through your diet...leaving you anemic.

It says "Unfortunately supplementing iron only makes these bacteria grow stronger and does not remedy anemia".

Because of the food intolerances and digestive symptoms....it might be a possibility?

I dont know because obviously the constant bleeding is a really big issue that needs to be resolved. But do you ever experience improvement with the iron.....or do things get worse after the IV's??

I do think that you have to get this under control before you can move onto other things....and he's right....there's no way you can do the OAT as long as you're bleeding.

Anyways, just thought it was worth mentioning.

[Rpm999]

thank you so much on the information so far , i didn't want to annoy you about it, i've just been so anxious to see that's interesting about what you say on why you think it's my problem, i didn't think twice of it because lack of big GI symptoms or anything really troubling with that, but everything you've said definitely makes sense to me...you'd know better than me, stranger things have happened i'm sure of course

as far as antibiotics, not really...during the winter, i had a tooth pulled out, so i took about a weeks worth of antibiotics, if that counts, but other than that, no

the doctor told me it was positive, but she really left me with that...i had know knowledge, no clue, no nothing....and in the time i've been sick, that's the only clue i've had, that randomly thrown there with nothing to work with

i'll definitely check out that thread, i saw some of your posts but not a thorough read through

i agree with that antibody thing of course, that's common sense, but if you plan to send a PM back whenever, i'll be glad to hear anything else you have to say

but about the doctor, remember posts back i said about that guy? he's just a naturopath and he has quite a few degrees and seems knowledgeable...he has gluten-free recipes on the website, has the igenex tests, does neurotransmitter testing, will order anything

you know what i remember though? when that bloodwork was done, it was back last summer, and i didn't really have many big neuro/mental symptoms...definitely some, but it obviously got worst and worst and worst, and i wasn't half as sick as i was now...yet that one level came up so high...so that makes a LOT of sense now about the other thing(s) causing a big chunk of these issues, but i'm sure gluten was causing problems that can't heal because of the other issues going on, right?

like i said though, that was so long ago and the level was so high, and i didn't go gluten-free for about 6 months after, nor have such crippling/horrible mental/neuro symptoms like i started to get

[Morejoy123]

Thanks for the replies and Welcomes. Everyone seemed so friendly I felt comfortable saying something! Now off to the Lyme thread to see what you posted

Carol

[CarlaB]

Hi. Just a quick post from my phone. I wanted to check on kassandra because I got a text that she went to the hospital for her anaphylactic shock. She's in pain but doing well enough for texts. She doesn't know how long she'll be there.

Welcome Carol. I'll check the Lyme thread on Sat. When I get home. And paula I haven't been home much lately. LOL.

I have been declining the past few days. With the trip to Miami and this one I wasn't doing ecoffee. I bought the stuff today and am on the upswing again. Amazing how much it helps.

[Rachel--24]

thank you so much on the information so far , i didn't want to annoy you about it, i've just been so anxious to see that's interesting about what you say on why you think it's my problem, i didn't think twice of it because lack of big GI symptoms or anything really troubling with that, but everything you've said definitely makes sense to me...you'd know better than me, stranger things have happened i'm sure of course

I dont have all the answers...just giving you direction. These are good places to start looking.

If you read the first article he mentions the fact that in these patients who have learning disabilities, pshychiatric disorders, allergies, etc....ALSO have digestive symptoms. However, the other issues are much more severe so the patient is only mentioning these other symptoms....and not mentioning the minor GI symptoms.

Its only when the Dr. starts *asking* about the GI stuff..."Are the stools normal?"....that the patient starts acknowledging that there ARE some abnormalities in the GI system.

This is exactly how things are with you. The neuro symptoms are severe and overwhelming but when I asked about GI stuff you acknowledged some abnormal stools and such. Its just that you dont consider them to be BIG GI issues.....but the fact that there ARE some symptoms...and that you DID have elevated anti-gliadin antibodies...DOES have significance in the big picture.

Does that make sense?

It was the same for me in the beginning...I was overwhelmed with neuro symptoms....and the fact that I was constipated or looking 7 months pregnant at the end of the day didnt seem to mean much to me at all during that time. However, it was very significant.....it was a major factor and without the GI problems I would not have been experiencing all of the rest.

[Rpm999]

oh you know what else i forgot to say, rachel? when i first first started getting sick, it was after i had some crazy GI attack, so i wonder if something like THAT could cause an infection? because that could be the underlying thing, that started it all

it was just such a strange type of attack, not even like reflux but it was in a way, but my whole system went crazy for hours and hours and i had a lot of problems when i was younger but it all seemed to just go away...for years i've had perfect health but i took terrible care of myself and i regret it, but i've learned so much so i'm thankful for it

it could have triggered celiac and just...that whole cycle that you know about, things causing things....like i said, i never doubted much because of not many GI symptoms, never mind them being bad, but celiac was definitely triggered, and it all started after that attack, spanning for a year and a half with nothing but that one bloodwork clue...i thought for sure i'd have lyme since it made sense, but with the things you told me about those other things causing the same exact issues i have, and what's happen/shown in this time, it wouldn't surprise me if i didn't at all now...still good to have tested of course, but what you're saying makes so much sense now that i really think of it...i always just dismissed things because of the GI situation not really being relevant to my symptoms

[Rachel--24]

you know what i remember though? when that bloodwork was done, it was back last summer, and i didn't really have many big neuro/mental symptoms...definitely some, but it obviously got worst and worst and worst, and i wasn't half as sick as i was now...yet that one level came up so high...so that makes a LOT of sense now about the other thing(s) causing a big chunk of these issues, but i'm sure gluten was causing problems that can't heal because of the other issues going on, right?

like i said though, that was so long ago and the level was so high, and i didn't go gluten-free for about 6 months after, nor have such crippling/horrible mental/neuro symptoms like i started to get

There's no way to know what came first the chicken or the egg.....but in your case if you do have Celiac Disease...that would have been putting alot of stress on your immune system. It would have also been causing damage to your intestinal lining (obviously)....this can leave your immune system weak and less capable of fighing off the pathogens.

You become more susceptible to other things when you have *any* undiagnosed/untreated disease which is continuing to put a great deal of stress on the immune system.

If the gut is damaged to the point of leaky gut....then you have all of these additional toxins entering the system and contributing to neurological symptoms. If you have dysbiosis....those potent and toxic metabolites produced by bacteria/yeast have access to your system...including the brain.

Thats where the problems can develop with psychological/pscychiatric symptoms....because those toxins are having a direct impact on the brain.

So I do think that your problem with celiac/gluten had a big role in this....and yes....now you have these other issues that probably piled on top of that.

I wasnt breast fed....no doubt that this played a role in my problems which developed down the road. The gut flora is so critical for good health.....and so many things are capable of altering it these days.

You never had antibiotics when you were younger?? For some reason I had thought you'd had some issues and then got better for awhile?? Anyways...if you had antibiotics back then, if you werent breast fed...those types of things could be factors which left you more susceptible to these issues.

I dont know if you're aware of this but Celiac (for some unknown reason) can go into a sort of "remission" during the teenage years. So you can be symptomatic as a child....then get better for awhile.....and then get hit with problems later on. You're 17 now....but these problems could have been there a long time.

I just wanna make sure I have this right though. Were you having symptoms (of any kind) when you were younger??

as far as antibiotics, not really...during the winter, i had a tooth pulled out, so i took about a weeks worth of antibiotics, if that counts, but other than that, no

I mean when you were younger??

the doctor told me it was positive, but she really left me with that...i had know knowledge, no clue, no nothing....and in the time i've been sick, that's the only clue i've had, that randomly thrown there with nothing to work with

She didnt tell you it was positive for Celiac?? Or that you had to eliminate all gluten from your diet??

Well, actually I'm not all that surprised. Stupid Doctors!!

Why were you tested for Celiac in the first place??

but about the doctor, remember posts back i said about that guy? he's just a naturopath and he has quite a few degrees and seems knowledgeable...he has gluten-free recipes on the website, has the igenex tests, does neurotransmitter testing, will order anything

Show him the results of your bloodwork.

[Rpm999]

You never had antibiotics when you were younger?? For some reason I had thought you'd had some issues and then got better for awhile?? Anyways...if you had antibiotics back then, if you werent breast fed...those types of things could be factors which left you more susceptible to these issues.

I dont know if you're aware of this but Celiac (for some unknown reason) can go into a sort of "remission" during the teenage years. So you can be symptomatic as a child....then get better for awhile.....and then get hit with problems later on. You're 17 now....but these problems could have been there a long time.

I just wanna make sure I have this right though. Were you having symptoms (of any kind) when you were younger??

oh no, i had plenty of antibiotics when i was younger! i thought you meant recently...my mom said i had worms or parasites when i was younger, asthma, bad GI symptoms....but for years and years and years i've been perfectly fine, it all seemed to vanish...but when i was younger, i had lots of problems, and the celiac thing makes sense because i bet it went into remission....random things i had a lot back then caused me to have lots of antibiotics like a lot of strep throat, the bad asthma, ect....things i haven't had in a while

i definitely believe that if i have celiac which it very much seems like i do, than everything when i was younger makes sense but it's entirely different symptoms now, but then again, it's different things/effects now

i just know that for years i was beyond happy, not sick at all, and when i was younger it was hell ....i didn't think of anything when i was younger because for years i had no symptoms and it was all perfectly fine

and that doctor ordered it i guess because i had so many symptoms? she was just a typical b%$@#y, money hungry doctor and it's sad that i didn't even get the results then...financial problems were going on and she wouldn't say anything...basically it was like "you have celiac, just stay off that"...so she acknowledged it, but NOTHING more, i had NO idea of ANYTHING or direction....and what made her word better than anybody elses?

[Rachel--24]

it was just such a strange type of attack, not even like reflux but it was in a way, but my whole system went crazy for hours and hours and i had a lot of problems when i was younger but it all seemed to just go away...for years i've had perfect health but i took terrible care of myself and i regret it, but i've learned so much so i'm thankful for it

Ok....this is what I was wondering about.

In my opinion you had problems which are not unlike other Celiacs who had symptoms that "disappeared" for awhile during pre-teen/teenage years.....only to come back later....and sometimes with a vengeance.

So I think whatever happened when you had that "attack" was your "trigger"...so you developed full blown symptoms. Now you have other issues.....which might not have been so bad if the doctor had explained things to you when you had the positive results for Celiac!

it could have triggered celiac and just...that whole cycle that you know about, things causing things....like i said, i never doubted much because of not many GI symptoms, never mind them being bad, but celiac was definitely triggered, and it all started after that attack, spanning for a year and a half with nothing but that one bloodwork clue...

exactly.

i thought for sure i'd have lyme since it made sense, but with the things you told me about those other things causing the same exact issues i have, and what's happen/shown in this time, it wouldn't surprise me if i didn't at all now...still good to have tested of course, but what you're saying makes so much sense now that i really think of it...i always just dismissed things because of the GI situation not really being relevant to my symptoms

The GI system *is* relevant to your symptoms though....you just never made that connection. Remember, the gut is like the body's "second brain"....and the condition of the gut has a direct impact on brain function.....these body systems are linked. You cant have leaky gut/dysbiosis issues without it having some effect on your brain.

For one thing when the gut is damaged you are not absorbing nutrients as well as you should be....and this can have an impact on brain function as well. On top of that you have the toxins produced by pathogenic organisms....as well as other toxins which are passing through the damaged intestinal lining. Its not a pretty situation to be in.

But yes....do not forget about Lyme.

when i first first started getting sick, it was after i had some crazy GI attack, so i wonder if something like THAT could cause an infection? because that could be the underlying thing, that started it all

Personally, I think you already had some issues. The whiole system doesnt usually "crash" overnight. Something was going on already in my opinion. But yeah....the GI attack was another stress to the system...you know the "straw that broke the camel's back".

I know you must have seen me mention that before?? Its the "event" which pushes the immune system too far...and thats when symptoms start appearing...sometimes gradually...sometimes rapidly. But I do think gluten was a primary stressor all along.

[Rachel--24]

oh no, i had plenty of antibiotics when i was younger! i thought you meant recently...my mom said i had worms or parasites when i was younger, asthma, bad GI symptoms....but for years and years and years i've been perfectly fine, it all seemed to vanish...but when i was younger, i had lots of problems, and the celiac thing makes sense because i bet it went into remission....random things i had a lot back then caused me to have lots of antibiotics like a lot of strep throat, the bad asthma, ect....things i haven't had in a while

Yeah.....it sounds to me like your problems began as a child....the antibiotics probably set you up for alot of what you're dealing with now.

You then probably went into remission....like many Celiacs do during those pre-teen/early teenage years.

i just know that for years i was beyond happy, not sick at all, and when i was younger it was hell ....i didn't think of anything when i was younger because for years i had no symptoms and it was all perfectly fine

I hoenstly dont think that things were "fine"....but your immune system had the ability at that time to deal with everything. So it was only a matter of time before something pushed you over the edge. So the "attack" wasnt actually the start of everything...because things started for you when you were very young. Like I said...it was probably the straw that broke the camels back.

and that doctor ordered it i guess because i had so many symptoms? she was just a typical b%$@#y, money hungry doctor and it's sad that i didn't even get the results then...financial problems were going on and she wouldn't say anything...basically it was like "you have celiac, just stay off that"...so she acknowledged it, but NOTHING more, i had NO idea of ANYTHING or direction....and what made her word better than anybody elses?

Thats very unfortunate.

Well.....its in the past.....nothing's gonna change it. You know alot about it now...and you know you cannot eat gluten anymore....and when you get these other problems sorted out...you're gonna feel alot better.

[Rachel--24]

Thanks for the replies and Welcomes. Everyone seemed so friendly I felt comfortable saying something!

We're a friendly group.

Glad you werent intimidated by the size of the thread (lots of people are)....just pop in whenever you want. We're always here.

[Rachel--24]

Hi. Just a quick post from my phone. I wanted to check on kassandra because I got a text that she went to the hospital for her anaphylactic shock. She's in pain but doing well enough for texts. She doesn't know how long she'll be there.

Thanks for the update Carla.

So I guess it was anaphylactic.

Poor thing....I hope this reaction passes quickly so that her pain eases up and so that she can go home. Tell her we're all thinking of her!

[mftnchn]

Quick drive by, I need to catch up, maybe tomorrow.

Good news today--I picked up my Spectracell results this morning and they were WAY better than last January!

I needed some input from the famous OMG detectives on my very very high RBC selenium and very very low something else that I can't remember because I just realized I left my copies of everything in a doctor's office today And then I couldn't get online most of the late afternoon and evening...

I seem to remember that you discussed this high selenium awhile back, Rachel.

Then I had heavy fatigue hit late afternoon and night sweats much worse...so die off from the babs maybe?

So a bit of a rough day with a little hope mixed in--

Tomorrow I see my LLMD.

Sherry

[AndreaB]

Oooooohhh....I am soooo bringing this to Amy or Anna. I think I'm gonna test well for this......I can just *feel* it.

Sounds good.

Omg, hubby is going to be so amazed when he comes home. The whole house is spotless, all laundry is done and dinner will be done by the time he walks in the door. I cant remember the last time this has happened.

Yay!!!! :D

update:

finished the antibiotic today. the infection hasnt' changed. maybe worse. i also started the other drug which is supposed to help. but it gives me terrible dry mouth, makes me irrationally agitated and pretty depressed.. i'm going to call the dr back tomorrow but i'm pretty blue about the whole situation. feel like i'll never feel normal again..

Hang in there Katy. Hope you can get things figured out soon.

OMG....are you sure that you're OK Paula??

What she said.

I am just going to read, I hope i dont start quoting things tho lol

Good ahead......course they were only on about page 90 when I joined in. I didn't have quite so much to read up on.

Hi. Just a quick post from my phone. I wanted to check on kassandra because I got a text that she went to the hospital for her anaphylactic shock. She's in pain but doing well enough for texts. She doesn't know how long she'll be there.

Give Kassandra our love. I'm so sorry she has to go through this.

Glad you're feeling better again.

Good news today--I picked up my Spectracell results this morning and they were WAY better than last January!

Yay!

Definately good news. Hoping you'll feel up to posting an update tomorrow.

[Ridgewalker]

Sincerely,

Jin

P.S. Has anyone heard from Rinne, Ami, Sarah, Kristina, or anyone else who has been missing for a while?

Hi Jin! I try to pop in (or poop in, as we often say on the Silly planet) every once in awhile. How have you been? I've been going through some supremely yucky stuff the past few weeks - withdrawal from an old med. But I'm hangin' in there.

Me and Sarah were having a good debate on the Glutenease thread.

A hot debate, for sure, but good points made on all sides, I think.

Just saw Carla's post about Kassandra!!! That poor girl needed this (on top of everything) like a stick in the eye.

[dlp252]

Eekk!!! Carla, if you see this before Kassandra gets back tell her I'm thinking of her!!!

Will be thinking of you. Are you call someone from in here after the surgery, so we dont worry the whole time you are away.

Yes, I'll call Andrea and maybe Patti and even Rachel if I feel chatty--it depends on how "out of it" I am, lol. I don't think I'll get a heavy sedation...I think they just do a leg block with a light sedation, but I can't imagine being awake for 90 minutes while they cut my bones, so I may ask for the "forget everything" drug. One of those things really messes me up though, but I think it might be worth it to not hear the sawing. I can say that I am still feeling the moderate sedation they gave me for my endoscopy on July 2!

I have also decided im going to go back and read all 2000 plus pages sometime in the near future lol.

OH NO!!!! Paula be careful...many people have gotten lost by going back!!!