Re: V pain & Excess Nerve proliferation (MORE)

[Guest guest]

Hi Dee,

Thanks for that article. I am always interested in the

nerve proliferation part of this.

I think the following paragraphs are largely

gobbledegook but who am I. It should be remembered

that this is still a THEORY. When they start talking

about a possibly gene cause my eyes dim and my

attentnion really wanders and of course this one has

been around for awhile. I wish they would try to

figure out the real cause.

The proliferation of nerves seems to be a really big

thing and in fact isn't Alzheimer's Disease a result

of tangled nerve proliferation in the brain? They

always throw out this gene thing and it goes on

forever and never ever to my mind reaches much in the

way of conclusion. If they would take what is known

about what causes nerve proliferation and then go from

there I would be impressed. I think that is where the

research money is--genes--and not peptides or food

causes or other boring things. (grouchy old lady

aren't I?)

Also, I have a question about Mast Cells, Dee. I know

that you have pondered this a long time. My question

is-----If there is inflammation or an otherwise

reaction to something--aren't there always mast cells

that appear? I have gotten the impression that you

think they are a separate thing and have been

confused. I dare you, unconfuse me! LOL

Anyway, thanks for the articles.

--- DeeTroll wrote:

" The current hypothesis is that the neuronal

proliferation in primary VVS is a congenital problem

(birth defect). Current evidence supporting this

hypothesis is that the tissue of the vestibule is

completely different tissue than the tissue of the

vaginal above the hymen (embryologically,

morphologically, and histologically).

(I don't know how the fact that the tissue is

different supports the hypothesis????????? I have a

hypothesis (that seems to be a fact) that gluten and

dairy causes neuronal proliferation all over the body

so I don't know why it is necessary to separate the

tissue in the genital area into a supporting of the

their hypothesis. The speculation that there is this

little special gene that only causes the attacks on

vestibular tissue and the similar tissue of the

urethra and bladder and not the nerve proliferation in

the rest of the nervous system sounds very dubious to

me.) Why are we forgetting, for example, the clitorus,

which I have special knowledge of since I had such

severe nerve pain there at one time.)

Therefore, it is plausible that a woman could have a

congenital problem in the vestibule without having any

problem in the vagina. This hypothesis is further

supported by the fact that there is a very high

concordance of women with VVS and interstitial

cystitis (a similar pain syndrome of the bladder and

urethra). The bladder and urethra are derived from the

same tissue as the vestibule.

(I would bet that women with this problem have other

evidences of potential nerve proliferation as

exemplified by inflammation in other parts of the body

besides these mentioned areas--like lower back pain,

etc.).

As I say--gobbleygook! My humble opinion.

If anybody want to do something good, start

researching nerve proliferation and see what can be

found.

LOL

Arline

__________________________________________________

[Guest guest]

Hi Babb, Dee and all,

IN the book Explain Pain, By ..he discribes how even

fairly modest pain continues to occupy greater and greater significance

and representation in your brain. Basically, the brain does not

understand "pain" as you feel pain. The brain sees or understands pain

as threat...danger! So if the stimulus of your painful vaginas,

vestibules, vulvas, pelvic floors, hips/ backs continues..your brain

wants you to get away from it, as in... run away or fight and defeat

the attacker.

Problem is, the brain does not understand that you are not under attack

by something you can simply just walk / run away from.

So, the longer you stay in harms way, the greater the intensity of the

pain. It is a defense mechanism that your primitive brain developed

eons ago and uses today to help you to survive!!

Secondly, the longer the pain,... the greater the emotional compounding

adds to the pain.

In many cases, the pain is doubled or trippled by the frustration,

fear, hopelessness, anxiety etc. that accompanies chronic pain no

matter where in the body it is.

Now, locate all that pain and negative emotions just mentioned to an

area of the body that is already an emotionally charge body part even

when it is health and you have the makings of one very stubborn pain.

Good news....there is an excellent solution to that component

of the pain which makes up the emotionally compounded component of the

disease.

If interested I will tell you more..and how to do it all yourself!!!

Hope this helps...

TKO

BABB wrote:

Hi Dee,

Thanks for that article. I am always interested in the

nerve proliferation part of this.

I think the following paragraphs are largely

gobbledegook but who am I. It should be remembered

that this is still a THEORY. When they start talking

about a possibly gene cause my eyes dim and my

attentnion really wanders and of course this one has

been around for awhile. I wish they would try to

figure out the real cause.

The proliferation of nerves seems to be a really big

thing and in fact isn't Alzheimer's Disease a result

of tangled nerve proliferation in the brain? They

always throw out this gene thing and it goes on

forever and never ever to my mind reaches much in the

way of conclusion. If they would take what is known

about what causes nerve proliferation and then go from

there I would be impressed. I think that is where the

research money is--genes--and not peptides or food

causes or other boring things. (grouchy old lady

aren't I?)

Also, I have a question about Mast Cells, Dee. I know

that you have pondered this a long time. My question

is-----If there is inflammation or an otherwise

reaction to something--aren't there always mast cells

that appear? I have gotten the impression that you

think they are a separate thing and have been

confused. I dare you, unconfuse me! LOL

Anyway, thanks for the articles.

--- DeeTroll <dtrollcboss>

wrote:

"The current hypothesis is that the neuronal

proliferation in primary VVS is a congenital problem

(birth defect). Current evidence supporting this

hypothesis is that the tissue of the vestibule is

completely different tissue than the tissue of the

vaginal above the hymen (embryologically,

morphologically, and histologically).

(I don't know how the fact that the tissue is

different supports the hypothesis????????? I have a

hypothesis (that seems to be a fact) that gluten and

dairy causes neuronal proliferation all over the body

so I don't know why it is necessary to separate the

tissue in the genital area into a supporting of the

their hypothesis. The speculation that there is this

little special gene that only causes the attacks on

vestibular tissue and the similar tissue of the

urethra and bladder and not the nerve proliferation in

the rest of the nervous system sounds very dubious to

me.) Why are we forgetting, for example, the clitorus,

which I have special knowledge of since I had such

severe nerve pain there at one time.)

Therefore, it is plausible that a woman could have a

congenital problem in the vestibule without having any

problem in the vagina. This hypothesis is further

supported by the fact that there is a very high

concordance of women with VVS and interstitial

cystitis (a similar pain syndrome of the bladder and

urethra). The bladder and urethra are derived from the

same tissue as the vestibule.

(I would bet that women with this problem have other

evidences of potential nerve proliferation as

exemplified by inflammation in other parts of the body

besides these mentioned areas--like lower back pain,

etc.).

As I say--gobbleygook! My humble opinion.

If anybody want to do something good, start

researching nerve proliferation and see what can be

found.

LOL

Arline

__________________________________________________

[Guest guest]

Yes, I definately want to know more!

Diane--

> If interested I will tell you more..and how to do it all yourself!!!

> Hope this helps...

>

[Guest guest]

Hi Tom,

Thank you for the email and of course we are

interested in hearing more. You have always been

helpful to a lot of people and have been a real voice

of moderation and patience.

The book sounds interesting and I am sure some will

look to that.

My biggest interest in this is that I think we are

dealing with an undiagnosed medical disease in so many

of these cases and that if we could find the greater

and specific causes, the pain might largely go away.

It did with me. Many however find that techniques,

therapy, etc., do greatly help their pain with

whatever problem they have.

In addition if you have any suggestions for neuropathy

where one's legs are becoming weakened you can send

that along, too. I am kind of joking here but have

found this Celiac and other food sensitivity

Neuropathy stuff to have many nasty hydra heads as

somebody wrote once in an article. (Hadjivasseliou in

the UK)

So, if you would be so kind, any suggestions you have

I know would be greatly appreciated.

Arline

--- " K. Ockler " wrote:

> Hi Babb, Dee and all,

> IN the book Explain Pain, By ..he

> discribes how even fairly

> modest pain continues to occupy greater and greater

> significance and

> representation in your brain. Basically, the brain

> does not understand

> " pain " as you feel pain. The brain sees or

> understands pain as

> threat...danger! So if the stimulus of your painful

> vaginas,

> vestibules, vulvas, pelvic floors, hips/ backs

> continues..your brain

> wants you to get away from it, as in... run away or

> fight and defeat the

> attacker.

> Problem is, the brain does not understand that you

> are not under attack

> by something you can simply just walk / run away

> from.

> So, the longer you stay in harms way, the greater

> the intensity of the

> pain. It is a defense mechanism that your primitive

> brain developed

> eons ago and uses today to help you to survive!!

> Secondly, the longer the pain,... the greater the

> emotional compounding

> adds to the pain.

> In many cases, the pain is doubled or trippled by

> the frustration, fear,

> hopelessness, anxiety etc. that accompanies chronic

> pain no matter where

> in the body it is.

> Now, locate all that pain and negative emotions just

> mentioned to an

> area of the body that is already an emotionally

> charge body part even

> when it is health and you have the makings of one

> very stubborn pain.

> Good news....there is an excellent solution to that

> component of the

> pain which makes up the emotionally compounded

> component of the disease.

> If interested I will tell you more..and how to do it

> all yourself!!!

> Hope this helps...

> TKO

__________________________________________________

[Guest guest]

HI Ar......

You know I always enjoy your thoughtful input and Q's *and nah... you're not grouchy, *grin*..no doubt your bark is worse than your bite, and likely a pussy cat underneath it all. *chuckle* I know bottom line is that you want to help, you've certainly been there yourself and suffered much.

Just rambling here so this doesn't follow any particular thread but musing out loud and scattered.

I also am not that sure of the gene theory myself (if you remember weren't there some members who were tested and didn't have that?) not that it can't be there and I do believe 'some' do have that autoimmune component. Self against Self.

From what I'm understanding from you..(and could be way off base here, Prob. am, *grin* so correct me please! ) are you implying that ''No'' the Self can't be against self without a first cause and it likely relates to diet in many cases. (?)

In other words are you rejecting the autoimmune theory and that it can't be inborn and inherited as a genetic weakness and passed on (something we just have to deal with and accept and cope with) and saying that this over proliferation of nerves is mainly caused by an 'outside' the body trigger? (like diet? which we'd put inside the body)? In your case it's Celiac which we know, but isn't it because it IS Celiac and that's an autoimmune condition passed on genetically?

(and thankfully there is no doubt that diet can help)

I guess that's where I get confused with what you're trying to express. ummm? (as I probably am confusing you.

While I'm likely in agreement with you that much of it is an outside external event that triggers those excessive nerve bundles in the first place, I definitely don't rule out a simple genetic connection as well.

Especially (as they seem to indicate in that article) the overuse of certain meds or chemicals like the local yeast meds or the abuse of steroids or as many of us have done when one thing didn't work we add more and more topicals with meds or use many kinds of lotions & potions and make things even worse the more we put on it literally frying those nerve endings in a way.

Or it could even be from a trauma for instance say of too large a partner, or a real frisky night *grin* or what they sometimes refer to as a straddle injury (bike, monkey bars etc.) Or it could be the diet as well as you indicate for many, it could be hormones, or allergies to many things as Dusty and some other are. But those allergies are they not likely genetic or a weakness or a tendency towards those as well? So that's back to the autoimmune thing in a way it seems to me. (but I also know we can 'develope' an allergy to something as well) such as bees etc. and may have had many stings no problem and next one BINGO huge reaction.

It certainly can be a mixed bag, talk about frustrating, I am just trying to clarify what I'm thinking, *grin*.

I'm thinking the excess nerve proliferation has many triggers and I see your reasoning as one possibility. Yet the only part of that I see as a problem is that if it were diet I would think it'd be a gradual progressive thing and not only with the vulva but the whole body, and not a suddenly ''wake up with the OMG.. the pain'', as if out of the blue almost. Not saying that it isnt progressive and may start out quite mild, but that's where I think we ourselves 'might' have helped that progression with the overuse of things too.

(or using things we had no idea we were allergic to and then that could fit in with diet as well)

Although I have no idea how many can actually pinpoint a time frame in space as to say I 'know' when mine started and the particular episode. I wonder if we each thought back could almost pinpoint a date when something started eh?

Anyway it seems to 'me' that this hyper-innervation or extreme sensitivity is (in my mind) caused or triggered by some kind of external event or trauma to the skin itself. (If it's not that genetic component) and the skin gets inflammed and irritated more and more.

As one doctor said "Think for a moment about all the rubbing that your vulval skin has to put up with: panties (especially G-strings or thongs); panti–liners, tampons and pads; pantihose; gym clothes; jeans'—the list is endless!

When you have sexual intercourse, the rubbing involved is merely the last straw in a long line of irritants. If your vulval skin is healthy, then sex does not cause pain or discomfort. Having sex is not the main problem or cause, the big problem is the inflammation of your vulval skin from all the other irritants in the first place."

(Let alone to say all the meds and topicals we might use ).

Then as the tissue tries to repair itself with regeneration thru Nerve growth factor, (NGF) or VEGF (Vascular endothelial growth factor) and so much more that goes on with wound healing, maybe it 'might' produce too much or too many of those nerves and along with those MORE actual Mast cells as well?

Then we get into the Mast cells which we all have and need and from those are released the anti-inflammatories (called cytokines) like the histamine, basophils and more, and they work for us in most cases, 'except' if it's an autoimmune thing, (OR maybe we have too many with the revascularization) and they do not know when to 'stop' fighting an infection and continue long past the time their services are needed.... and consequently cause 'even more' inflammation, itch, etc.

And it becomes a viscious circle as we add more and more meds to try to halt that. I've found that with a yeast infection.. where the meds do eliminate the yeast but we're left with the inflammation.. and instead use 'more' yeast meds when that's not the problem, it's the leftover inflammation that now has to be dealt with.

There is also a condition known as Mastocytosis.. and some are born with that (a genetic condition) where the Mast cells are in overabundance to begin with compared to the average person. It can even cause death it's so serious as it can be internal as well as external.

I tell you Ar, it's definitely a confusing muddle to me too (tho you say you've found something that settled it in your mind), I haven't not as anything definitive at least, I truly don't think we'll ever find just one thing, it's a big mixed up bag for sure.

The bottom line for me when I was so bad was I just wanted to be healed and didn't care what the name of it was OR the cause... and knew that the hormones could heal that skin, but to this day no idea of what the initiating trigger was for those 10 years of hell as I too kept trying the myriad of things out there and in hindsite by using SO much, likely made things a hundred times worse because of the desperation. *sigh*

I know I didn't make much sense*grin* and my train of thought was scattered all over the place, sorry.

A Dr. G. Fisher a dermatologist claims most vulvar problems are 'skin' conditions. But she also says as Tom indicates a secondary issue....

.."..... it can be self perpetuating because once a woman experiences pain with intercourse the next time she anticipates, tightens her vaginal muscles, and so just the tightening of the vaginal muscles can produce pain and then she gets into a vicious cycle"

For a good article by her try this link.

http://www.mydr.com.au/default.asp?article=2583 It's a great article 'except' for one small paragraph I disagree with her on..*smile*

Where she talks about an estrogen 'overload' as a possibility but then mentions birth control as not being a part of that (which tells me that's when the sensitivity is more active and I 'know' it's the progestin in those and not the estrogen, (my opinion of course) but suggests to me that she too has it backwards with the estrogen progesterone connection. Anyway it really is a good article over all and worth the read about vulvar pain.

Hugs to all and forgive the outloud meanderings. I am outta here as my brain cells are fried right now, LOL

Dee~

[Guest guest]

Hi Dee,

> Just rambling here so this doesn't follow any

> particular thread but musing out loud and scattered.

>

(I always knew your were a rambling rose with no

thorns) ;o)

>

> I also am not that sure of the gene theory myself

> (if you remember weren't there some members who were

> tested and didn't have that?) not that it can't be

> there and I do believe 'some' do have that

> autoimmune component. Self against Self.

I definitely think an autoimmune disease is as you say

" self against self " and whether one is born with this

" self against self " thing to just destroy its own body

without triggers or (CAUSES) might even be possible.

BUT as in Celiac Disease which they claim has certain

genes that predetermine susceptibility, one has to

have the triggers. I suspect most if not all other

autoimmune diseases have to have the triggers. The

triggers need to be found. I think more often than not

the triggers are food or other things ingested into

the body which causes the " self to self " . If these

triggers didn't exist, the disease would not be

activated.

>

> From what I'm understanding from you..(and could be

> way off base here, Prob. am, *grin* so correct me

> please! ) are you implying that ''No'' the Self

> can't be against self without a first cause and it

> likely relates to diet in many cases. (?)

Yes, I think that is likely true. I don't think

anybody should accept the fact that they are born with

an autoimmune disease and the only thing that can be

done about it is to stop the symptoms with

medications, etc. It seems to me that medicine treats

all disease like that--only treating not looking for

what caused it and the genes didn't cause most of

these things. I think we are all born with inborn

possiblities for disease and indeed that is why some

of us die (joking again). If we knew what caused it we

would likely last longer.

>

> In other words are you rejecting the autoimmune

> theory and that it can't be inborn and inherited

We are born and inherit everything about ourselves.

as

> a genetic weakness and passed on

I don't know if calling it a genetic weakness is quite

accurate. It is just genetics.

(something we just

> have to deal with and accept and cope with)

Yes, I don't think we have to just deal with and

accept it and take those darned pills, etc. if we can

find out what causes the reactions and the disease

and deal with it that way.

> saying that this over proliferation of nerves is

> mainly caused by an 'outside' the body trigger?

Yes! Although it can be more complex where the outside

the body triggers cause a reaction but the body itself

produces chemicals (like mast cells) which may

themselves help to cause all kinds of nerve problems

when they are called on repeatedly by the body to

protect it from whatever is threatening it.

> (like diet? which we'd put inside the body)?

Yes!

In

> your case it's Celiac which we know, but isn't it

> because it IS Celiac and that's an autoimmune

> condition passed on genetically?

Everything is genetic and passed on. All of us have

things. All of us have health issues. All of us should

try to find out what causes the health issues. There

are certain things we are born with that are

impossible to change of course. I think they are

mostly physical defects in the body system. The things

they call autoimmune don't seem to me to be defects.

Celiac is apparently passed on genetically but I like

to think of it is an inability of the body to digest

gluten grains rather than an autoimmune disease even

though that is what they say. It is like a code word

that doesn't tell you much except what kind of pills

they are going to prescribe. (I hardly believe

anything I hear medically these days and when they try

to put diseases in categories like autoimmune self on

self) that just means they don't know what causes it,

don't plan to really spend much time looking at it,

don't care what kind of incorrect information is out

there, and to get rid of this troublesome patient, so

we will medicate her or offer her the next snake oil

even though we know it won't work, I just won't

swallow it--the medicine or the lies. Some will just

say that there is nothing you can do but just live

with it. That is when I start looking myself.

If people want to accept this theory of having an

autoimmune disease and there is nothing they can do

about it but listen to their doctors (their 58th

doctor on the subject)--okay. I would love to be so

obedient and believing. It just isn't me. I hate being

lied to and being abused. What one does about it is

harder as one certainly can't change the system.

>

> (and thankfully there is no doubt that diet can

> help)

It certainly can.

Dee, more and more there is evidence that certain

foods causes many of these so called " autoimmune

disease " . I think what we ingest causes most of them

and they aren't really even looking.

>

> I guess that's where I get confused with what you're

> trying to express. ummm? (as I probably am

> confusing you.

I hope I am not confusing you LOL.

>

> While I'm likely in agreement with you that much of

> it is an outside external event that triggers those

> excessive nerve bundles in the first place, I

> definitely don't rule out a simple genetic

> connection as well.

There are all kinds of nerve cells in every inch of

our bodies. I think we should identify which nerves we

might be talking about. This very complex. What we

should do I think it start with the simple stuff first

like what might be causing something.

What are the things that cause nerve proliferation???

I recently learned that opioid peptides in gluten and

milk causes it.(That was a relief to finally know that

or at least read it.

Yesterday I read they some think mast cells can cause

it but then again the mast cells seem to appear to

fight an attack from some toxic things (like gluten

peptides which are tiny proteins).

What else causes nerve proliferation?? If anybody is

interested in trying to find out about this, that

seems a good place to start to look. If one has the

vestibulitis, they apparently have a proliferation of

nerves.

>

> Especially (as they seem to indicate in that

> article) the overuse of certain meds or chemicals

> like the local yeast meds or the abuse of steroids

> or as many of us have done when one thing didn't

> work we add more and more topicals with meds or use

> many kinds of lotions & potions and make things even

> worse the more we put on it literally frying those

> nerve endings in a way.

This doesn't sound like proliferation but downright

nerve burning. That isn't autoimmune.

>

> Or it could even be from a trauma for instance say

> of too large a partner, or a real frisky night

> *grin* or what they sometimes refer to as a straddle

> injury (bike, monkey bars etc.)

There are all kinds of ways to damage the nerves and

certainly physical trauma is one of them. I don't have

that. In my neck I have a spine and surrounding nerves

that are closing up and shrinking. (I forget the

medical term). I think that is an autoimmune thing,

the body is attacking, because of celiac.

Certainly if ones genitals are so burned with steroids

and antifungals, there are some nerves that many be

fried or maybe not.

Or it could be the

> diet as well as you indicate for many, it could be

> hormones,

Is there anything anywhere that says hormones cause an

autoimmune disease?? I suspect that there might be

something that affects the hormones (like celiac

disease or something else) that causes fewer hormones

or excess hormones or incorrect growth or some other

thing that causes conditions like endometriosis.

or allergies to many things as Dusty and

> some other are. But those allergies are they not

> likely genetic or a weakness or a tendency towards

> those as well?

Allergies themselves need not just be straight forward

and if other conditions are found the allergies might

be lessened or solved. But if one wants to think it is

allergy, find out what it is. Everything is genetic

and most things have a trigger. IF one is allergic to

something, don't use it, wear it, or be around it but

in the process try to get healthy. I doubt that any

allergies stand alone.

So that's back to the autoimmune

> thing in a way it seems to me. (but I also know we

> can 'develope' an allergy to something as well) such

> as bees etc. and may have had many stings no problem

> and next one BINGO huge reaction.

I'm not sure how we are back to the autoimmune??LOL

>

> It certainly can be a mixed bag, talk about

> frustrating, I am just trying to clarify what I'm

> thinking, *grin*.

>

> I'm thinking the excess nerve proliferation has many

> triggers and I see your reasoning as one

> possibility.

YES YES YES If that is true, then we need to find out

what we put into our bodies that cause it. What are

those things that cause the proliferation?

Yet the only part of that I see as a

> problem is that if it were diet I would think it'd

> be a gradual progressive thing and not only with the

> vulva but the whole body,

There is something called critical mass, usually

thought of when we are talking about atomic bombs,

etc., but disease can be that way too.

and not a suddenly ''wake

> up with the OMG.. the pain'', as if out of the blue

> almost.

My clitoral pain started with slight itching,

progressed to big time itching and then went to pain.

Not saying that it isnt progressive and may

> start out quite mild, but that's where I think we

> ourselves 'might' have helped that progression with

> the overuse of things too.

Of course. Over use of stuff is bad and damaging but

that isn't nerve proliferation. That sounds like

straight up damage to skin.

>

> (or using things we had no idea we were allergic to

> and then that could fit in with diet as well)

>

> Although I have no idea how many can actually

> pinpoint a time frame in space as to say I 'know'

> when mine started and the particular episode. I

> wonder if we each thought back could almost pinpoint

> a date when something started eh?

People have selective memories.

>

> Anyway it seems to 'me' that this hyper-innervation

> or extreme sensitivity is (in my mind) caused or

> triggered by some kind of external event or trauma

> to the skin itself. (If it's not that genetic

> component) and the skin gets inflammed and irritated

> more and more.

Sounds good to me but I'm not sure that is

proliferation.

>

> As one doctor said " Think for a moment about all the

> rubbing that your vulval skin has to put up with:

> panties (especially G-strings or thongs);

> panti-liners, tampons and pads; pantihose; gym

> clothes; jeans'-the list is endless!

> When you have sexual intercourse, the rubbing

> involved is merely the last straw in a long line of

> irritants. If your vulval skin is healthy, then sex

> does not cause pain or discomfort. Having sex is not

> the main problem or cause, the big problem is the

> inflammation of your vulval skin from all the other

> irritants in the first place. "

>

> (Let alone to say all the meds and topicals we might

> use ).

Sounds right to me.

>

>

> Then as the tissue tries to repair itself with

> regeneration thru Nerve growth factor, (NGF) or

> VEGF (Vascular endothelial growth factor) and so

> much more that goes on with wound healing, maybe it

> 'might' produce too much or too many of those nerves

> and along with those MORE actual Mast cells as well?

I don't know. I honestly hadn't thought about this

aspect as I don't know much about nerve healing. Go

girl!!

>

> Then we get into the Mast cells which we all have

> and need and from those are released the

> anti-inflammatories (called cytokines) like the

> histamine, basophils and more, and they work for us

> in most cases, 'except' if it's an autoimmune thing,

> (OR maybe we have too many with the

> revascularization) and they do not know when to

> 'stop' fighting an infection and continue long past

> the time their services are needed.... and

> consequently cause 'even more' inflammation, itch,

> etc.

>

> And it becomes a viscious circle as we add more and

> more meds to try to halt that. I've found that with

> a yeast infection.. where the meds do eliminate the

> yeast but we're left with the inflammation.. and

> instead use 'more' yeast meds when that's not the

> problem, it's the leftover inflammation that now has

> to be dealt with.

>

> There is also a condition known as Mastocytosis..

> and some are born with that (a genetic condition)

> where the Mast cells are in overabundance to begin

> with compared to the average person. It can even

> cause death it's so serious as it can be internal as

> well as external.

>

> I tell you Ar, it's definitely a confusing muddle to

> me too (tho you say you've found something that

> settled it in your mind), I haven't not as anything

> definitive at least, I truly don't think we'll ever

> find just one thing, it's a big mixed up bag for

> sure.

>

> The bottom line for me when I was so bad was I just

> wanted to be healed and didn't care what the name of

> it was OR the cause... and knew that the hormones

> could heal that skin, but to this day no idea of

> what the initiating trigger was for those 10 years

> of hell as I too kept trying the myriad of things

> out there and in hindsite by using SO much, likely

> made things a hundred times worse because of the

> desperation. *sigh*

>

> I know I didn't make much sense*grin* and my train

> of thought was scattered all over the place, sorry.

>

>

> A Dr. G. Fisher a dermatologist claims most vulvar

> problems are 'skin' conditions. But she also says

> as Tom indicates a secondary issue....

Yes, and it seems to me that you are mostly talking

about skin conditions where I was talking about VV

VVS and clitoral pain and nerve proliferation.

>

> . " ..... it can be self perpetuating because once a

> woman experiences pain with intercourse the next

> time she anticipates, tightens her vaginal muscles,

> and so just the tightening of the vaginal muscles

> can produce pain and then she gets into a vicious

> cycle "

>

> For a good article by her try this link.

> http://www.mydr.com.au/default.asp?article=2583

> It's a great article 'except' for one small

> paragraph I disagree with her on..*smile*

>

> Where she talks about an estrogen 'overload' as a

> possibility but then mentions birth control as not

> being a part of that (which tells me that's when the

> sensitivity is more active and I 'know' it's the

> progestin in those and not the estrogen, (my opinion

> of course) but suggests to me that she too has it

> backwards with the estrogen progesterone connection.

> Anyway it really is a good article over all and

> worth the read about vulvar pain.

I agree with the progesterone thoughts--terrible

stuff. Thanks for the time and the words.

Ar

__________________________________________________

[Guest guest]

I have tried to trace what might have initially triggered my VVS and since I started having symptoms only a few months after losing my virginity, I keep thinking the only things that really changed for me were starting on the birth control pill and having my first yeast infection in at least 10 years and using Monistat to cure it, and having my first urinary tract infection. At that point my diet did not really change and I know that I didn't have any pain during the first few months of having sexual intercourse because I was able to enjoy it for a short time before developing VVS. The first thing my doctor did was take me off that birth control pill. I'm curious to know how many folks were on the birth control pill when they first developed VVS?

[Guest guest]

My thinking is....I know I have seen just a gradual deterioration of my health over the last 15 years and everything seems to be related in some way. And that's not unusual I guess.

First, the vvs....

then I suddenly developed bad allergies(never had them as a kid) and after several years of earraches, sinus infections, headaches, constant nasal drip and a hacking cough, I finally got tested and put on allergy shots, which I've been on now for about 9 or 10 years. And Allegra and Sinuvent which I take daily and have for years. Every time I go a month without my shot I get a sinus infection.

Then, I became lactose intolerant which I now know was related to the gluten intolerance destroying part of my small intestine but didn't know then.

Then rosacea.

Then, I found out I had interstitial cystitis, a chronic pain condition of the bladder, involving the mast cells.

Then, gluten intolerance.

Then, lichen sclerosis, etc.

So... I'm just adding it all up and I know many folks on this list have a similar list of illnesses that are most probably related. Most of my problems seem to be related to my immune system overreacting to things.

There could be one trigger but my guess is there is a list... gluten, yeast, mold, medications, toxic chemicals, hormonal changes, bacteria, E Coli, etc. It's hard to know. But, eliminating wheat is a start for me. I keep thinking some kind of detox couldn't hurt.

I keep thinking of my friend who went through chemotherapy three times and now has lupus. And my grandmother who got lupus and her family thinks it was caused by a reaction to a heart medication she was on. I often worry about taking medications daily because you just never know. I just started taking that sun chlorella (algae) because it's supposed to help detox your body so it couldn't hurt and is all natural. : ) AA gives it out to alcoholics for alcohol poisoning. It was also given to some folks who had arsenic poisoning and it supposedly helped. I'll keep you posted.

Re: V pain & Excess Nerve proliferation (MORE)

Hi Dee,Thanks for that article. I am always interested in thenerve proliferation part of this.I think the following paragraphs are largelygobbledegook but who am I. It should be remembered that this is still a THEORY. When they start talkingabout a possibly gene cause my eyes dim and myattentnion really wanders and of course this one hasbeen around for awhile. I wish they would try tofigure out the real cause.The proliferation of nerves seems to be a really bigthing and in fact isn't Alzheimer's Disease a resultof tangled nerve proliferation in the brain? Theyalways throw out this gene thing and it goes onforever and never ever to my mind reaches much in theway of conclusion. If they would take what is knownabout what causes nerve proliferation and then go fromthere I would be impressed. I think that is where theresearch money is--genes--and not peptides or foodcauses or other boring things. (grouchy old ladyaren't I?)Also, I have a question about Mast Cells, Dee. I knowthat you have pondered this a long time. My questionis-----If there is inflammation or an otherwisereaction to something--aren't there always mast cellsthat appear? I have gotten the impression that youthink they are a separate thing and have beenconfused. I dare you, unconfuse me! LOLAnyway, thanks for the articles.--- DeeTroll <dtrollcboss> wrote:"The current hypothesis is that the neuronalproliferation in primary VVS is a congenital problem(birth defect). Current evidence supporting thishypothesis is that the tissue of the vestibule iscompletely different tissue than the tissue of thevaginal above the hymen (embryologically,morphologically, and histologically).(I don't know how the fact that the tissue isdifferent supports the hypothesis????????? I have ahypothesis (that seems to be a fact) that gluten anddairy causes neuronal proliferation all over the bodyso I don't know why it is necessary to separate thetissue in the genital area into a supporting of thetheir hypothesis. The speculation that there is thislittle special gene that only causes the attacks onvestibular tissue and the similar tissue of theurethra and bladder and not the nerve proliferation inthe rest of the nervous system sounds very dubious tome.) Why are we forgetting, for example, the clitorus,which I have special knowledge of since I had suchsevere nerve pain there at one time.)Therefore, it is plausible that a woman could have acongenital problem in the vestibule without having anyproblem in the vagina. This hypothesis is furthersupported by the fact that there is a very highconcordance of women with VVS and interstitialcystitis (a similar pain syndrome of the bladder andurethra). The bladder and urethra are derived from thesame tissue as the vestibule.(I would bet that women with this problem have otherevidences of potential nerve proliferation asexemplified by inflammation in other parts of the bodybesides these mentioned areas--like lower back pain,etc.).As I say--gobbleygook! My humble opinion.If anybody want to do something good, startresearching nerve proliferation and see what can befound.LOLArline__________________________________________________

[Guest guest]

You need to make

sure that everything that goes into your mouth is

completely gluten free or you don't put it in your

mouth.

Dear Arline,

You bring up a point here that has been bothering me.

I am following what i believe is a very strict gluten-free

diet/lifestyle after having a postive Enterolab test result

(prompted by guess who?). I have even taken to wetting

my envelopes manually when i seal them, rather than

risk some gluten lurking in the glues. But i have a boyfriend who is NOT gluten- free. (I don't live with him,

but i see him seveal days a week .) He is, to my mind,

a total wheat addict and i am very willing to bet,

given that fact and his various health issues, that he

is probably seriously gluten sensitive himself. He,

however, is in serious denial and despite all my nagging, subtle and otherwise, he will not do the Enterolab test,

claiming it's too expensive (grrr. . .) and i haven't been able to get him to do a gluten-free trial . . . yet.

Now, to my question, which has to do with. . . kisses

and wheat-y aromas wafting in the wind. I can't imagine that there isn't some gluten hanging out in his saliva on a regular basis. So, unless we move to just a peck on the cheek (and with the all the current constraints on our

sex life due to my vulvar pain problems, i'm really not willing

to do that), am i totally negating all my good work at avoiding

gluten every time we pucker up? Or when he toasts some

bread and eats it in my presence, as i inhale the aroma? Should i insist he spend five minutes brushing his mouth into

gluten-free submission (Is that even possible?) before i allow him

to get close to me? Must i ban all gluten products from the premises???? (I certainly don't have any around myself, but he

often brings take-out sandwiches over to eat.) I should say

that i have already banished his toothbrush to another brush holder

all by its lonesome. . . . .

What is a gluten sensitive girl with a boyfriend whom i'm now referring

to as "gluten mouth" to do?????? ;(

Sign me,

Glutted with Gluten Questions in Pa.

(a.k.a. Hollis)

[Guest guest]

You need to make

sure that everything that goes into your mouth is

completely gluten free or you don't put it in your

mouth.

Dear Arline,

You bring up a point here that has been bothering me.

I am following what i believe is a very strict gluten-free

diet/lifestyle after having a postive Enterolab test result

(prompted by guess who?). I have even taken to wetting

my envelopes manually when i seal them, rather than

risk some gluten lurking in the glues. But i have a boyfriend who is NOT gluten- free. (I don't live with him,

but i see him seveal days a week .) He is, to my mind,

a total wheat addict and i am very willing to bet,

given that fact and his various health issues, that he

is probably seriously gluten sensitive himself. He,

however, is in serious denial and despite all my nagging, subtle and otherwise, he will not do the Enterolab test,

claiming it's too expensive (grrr. . .) and i haven't been able to get him to do a gluten-free trial . . . yet.

Now, to my question, which has to do with. . . kisses

and wheat-y aromas wafting in the wind. I can't imagine that there isn't some gluten hanging out in his saliva on a regular basis. So, unless we move to just a peck on the cheek (and with the all the current constraints on our

sex life due to my vulvar pain problems, i'm really not willing

to do that), am i totally negating all my good work at avoiding

gluten every time we pucker up? Or when he toasts some

bread and eats it in my presence, as i inhale the aroma? Should i insist he spend five minutes brushing his mouth into

gluten-free submission (Is that even possible?) before i allow him

to get close to me? Must i ban all gluten products from the premises???? (I certainly don't have any around myself, but he

often brings take-out sandwiches over to eat.) I should say

that i have already banished his toothbrush to another brush holder

all by its lonesome. . . . .

What is a gluten sensitive girl with a boyfriend whom i'm now referring

to as "gluten mouth" to do?????? ;(

Sign me,

Glutted with Gluten Questions in Pa.

(a.k.a. Hollis)

[Guest guest]

You need to make

sure that everything that goes into your mouth is

completely gluten free or you don't put it in your

mouth.

Dear Arline,

You bring up a point here that has been bothering me.

I am following what i believe is a very strict gluten-free

diet/lifestyle after having a postive Enterolab test result

(prompted by guess who?). I have even taken to wetting

my envelopes manually when i seal them, rather than

risk some gluten lurking in the glues. But i have a boyfriend who is NOT gluten- free. (I don't live with him,

but i see him seveal days a week .) He is, to my mind,

a total wheat addict and i am very willing to bet,

given that fact and his various health issues, that he

is probably seriously gluten sensitive himself. He,

however, is in serious denial and despite all my nagging, subtle and otherwise, he will not do the Enterolab test,

claiming it's too expensive (grrr. . .) and i haven't been able to get him to do a gluten-free trial . . . yet.

Now, to my question, which has to do with. . . kisses

and wheat-y aromas wafting in the wind. I can't imagine that there isn't some gluten hanging out in his saliva on a regular basis. So, unless we move to just a peck on the cheek (and with the all the current constraints on our

sex life due to my vulvar pain problems, i'm really not willing

to do that), am i totally negating all my good work at avoiding

gluten every time we pucker up? Or when he toasts some

bread and eats it in my presence, as i inhale the aroma? Should i insist he spend five minutes brushing his mouth into

gluten-free submission (Is that even possible?) before i allow him

to get close to me? Must i ban all gluten products from the premises???? (I certainly don't have any around myself, but he

often brings take-out sandwiches over to eat.) I should say

that i have already banished his toothbrush to another brush holder

all by its lonesome. . . . .

What is a gluten sensitive girl with a boyfriend whom i'm now referring

to as "gluten mouth" to do?????? ;(

Sign me,

Glutted with Gluten Questions in Pa.

(a.k.a. Hollis)

[Guest guest]

Hi ,

When you are gluten sensitive and until your body is

completely free of the antibodies that are caused by

your body constantly attacking the gluten, which is

your immune system reacting to the poison (and that is

what it is to you) your whole body will continue to

deteriorate.

All of your problems can be and probably are related

to gluten and probably dairy.

If you are eating any at all--wheat, barley, rye,

oats, and any processed or prepared food or drink and

even in your medications, you are still getting

gluten. Your diet has to be perfect. You need to make

sure that everything that goes into your mouth is

completely gluten free or you don't put it in your

mouth.

I constantly had ear infections, sinus infections,

bronchitis, allergies, bladder infections, lactose

intolerant, rosacea, lichen sclerosis, (12 biopsies),

litoral pain, vulvar itching and burning and more.

Those things went away when my diet was changed.

Thank you for writing this email. I hope you can

change this for yourself. Your whole body is

constantly in attack mode against itself. HOpefully

when you get rid of the gluten entirely it will calm

down and you will have less pain and get normal.

Gluten sensitivity is not just an allergy but a

serious damaging destroying disease. It can destroy

any organ in your body and does. Good luck with this.

Arline

--- Berry wrote:

> My thinking is....I know I have seen just a gradual

> deterioration of my health over the last 15 years

> and everything seems to be related in some way. And

> that's not unusual I guess.

> First, the vvs....

>

> then I suddenly developed bad allergies(never had

> them as a kid) and after several years of

> earraches, sinus infections, headaches, constant

> nasal drip and a hacking cough, I finally got tested

> and put on allergy shots, which I've been on now for

> about 9 or 10 years. And Allegra and Sinuvent which

> I take daily and have for years. Every time I go a

> month without my shot I get a sinus infection.

>

> Then, I became lactose intolerant which I now know

> was related to the gluten intolerance destroying

> part of my small intestine but didn't know then.

> Then rosacea.

> Then, I found out I had interstitial cystitis, a

> chronic pain condition of the bladder, involving the

> mast cells.

> Then, gluten intolerance.

> Then, lichen sclerosis, etc.

>

> So... I'm just adding it all up and I know many

> folks on this list have a similar list of illnesses

> that are most probably related. Most of my problems

> seem to be related to my immune system overreacting

> to things.

>

> There could be one trigger but my guess is there is

> a list... gluten, yeast, mold, medications, toxic

> chemicals, hormonal changes, bacteria, E Coli, etc.

> It's hard to know. But, eliminating wheat is a

> start for me. I keep thinking some kind of detox

> couldn't hurt.

> I keep thinking of my friend who went through

> chemotherapy three times and now has lupus. And my

> grandmother who got lupus and her family thinks it

> was caused by a reaction to a heart medication she

> was on. I often worry about taking medications daily

> because you just never know. I just started taking

> that sun chlorella (algae) because it's supposed to

> help detox your body so it couldn't hurt and is all

> natural. : ) AA gives it out to alcoholics for

> alcohol poisoning. It was also given to some folks

> who had arsenic poisoning and it supposedly helped.

> I'll keep you posted.

>

>

__________________________________________________

[Guest guest]

Hi ,

When you are gluten sensitive and until your body is

completely free of the antibodies that are caused by

your body constantly attacking the gluten, which is

your immune system reacting to the poison (and that is

what it is to you) your whole body will continue to

deteriorate.

All of your problems can be and probably are related

to gluten and probably dairy.

If you are eating any at all--wheat, barley, rye,

oats, and any processed or prepared food or drink and

even in your medications, you are still getting

gluten. Your diet has to be perfect. You need to make

sure that everything that goes into your mouth is

completely gluten free or you don't put it in your

mouth.

I constantly had ear infections, sinus infections,

bronchitis, allergies, bladder infections, lactose

intolerant, rosacea, lichen sclerosis, (12 biopsies),

litoral pain, vulvar itching and burning and more.

Those things went away when my diet was changed.

Thank you for writing this email. I hope you can

change this for yourself. Your whole body is

constantly in attack mode against itself. HOpefully

when you get rid of the gluten entirely it will calm

down and you will have less pain and get normal.

Gluten sensitivity is not just an allergy but a

serious damaging destroying disease. It can destroy

any organ in your body and does. Good luck with this.

Arline

--- Berry wrote:

> My thinking is....I know I have seen just a gradual

> deterioration of my health over the last 15 years

> and everything seems to be related in some way. And

> that's not unusual I guess.

> First, the vvs....

>

> then I suddenly developed bad allergies(never had

> them as a kid) and after several years of

> earraches, sinus infections, headaches, constant

> nasal drip and a hacking cough, I finally got tested

> and put on allergy shots, which I've been on now for

> about 9 or 10 years. And Allegra and Sinuvent which

> I take daily and have for years. Every time I go a

> month without my shot I get a sinus infection.

>

> Then, I became lactose intolerant which I now know

> was related to the gluten intolerance destroying

> part of my small intestine but didn't know then.

> Then rosacea.

> Then, I found out I had interstitial cystitis, a

> chronic pain condition of the bladder, involving the

> mast cells.

> Then, gluten intolerance.

> Then, lichen sclerosis, etc.

>

> So... I'm just adding it all up and I know many

> folks on this list have a similar list of illnesses

> that are most probably related. Most of my problems

> seem to be related to my immune system overreacting

> to things.

>

> There could be one trigger but my guess is there is

> a list... gluten, yeast, mold, medications, toxic

> chemicals, hormonal changes, bacteria, E Coli, etc.

> It's hard to know. But, eliminating wheat is a

> start for me. I keep thinking some kind of detox

> couldn't hurt.

> I keep thinking of my friend who went through

> chemotherapy three times and now has lupus. And my

> grandmother who got lupus and her family thinks it

> was caused by a reaction to a heart medication she

> was on. I often worry about taking medications daily

> because you just never know. I just started taking

> that sun chlorella (algae) because it's supposed to

> help detox your body so it couldn't hurt and is all

> natural. : ) AA gives it out to alcoholics for

> alcohol poisoning. It was also given to some folks

> who had arsenic poisoning and it supposedly helped.

> I'll keep you posted.

>

>

__________________________________________________

[Guest guest]

Hi ,

When you are gluten sensitive and until your body is

completely free of the antibodies that are caused by

your body constantly attacking the gluten, which is

your immune system reacting to the poison (and that is

what it is to you) your whole body will continue to

deteriorate.

All of your problems can be and probably are related

to gluten and probably dairy.

If you are eating any at all--wheat, barley, rye,

oats, and any processed or prepared food or drink and

even in your medications, you are still getting

gluten. Your diet has to be perfect. You need to make

sure that everything that goes into your mouth is

completely gluten free or you don't put it in your

mouth.

I constantly had ear infections, sinus infections,

bronchitis, allergies, bladder infections, lactose

intolerant, rosacea, lichen sclerosis, (12 biopsies),

litoral pain, vulvar itching and burning and more.

Those things went away when my diet was changed.

Thank you for writing this email. I hope you can

change this for yourself. Your whole body is

constantly in attack mode against itself. HOpefully

when you get rid of the gluten entirely it will calm

down and you will have less pain and get normal.

Gluten sensitivity is not just an allergy but a

serious damaging destroying disease. It can destroy

any organ in your body and does. Good luck with this.

Arline

--- Berry wrote:

> My thinking is....I know I have seen just a gradual

> deterioration of my health over the last 15 years

> and everything seems to be related in some way. And

> that's not unusual I guess.

> First, the vvs....

>

> then I suddenly developed bad allergies(never had

> them as a kid) and after several years of

> earraches, sinus infections, headaches, constant

> nasal drip and a hacking cough, I finally got tested

> and put on allergy shots, which I've been on now for

> about 9 or 10 years. And Allegra and Sinuvent which

> I take daily and have for years. Every time I go a

> month without my shot I get a sinus infection.

>

> Then, I became lactose intolerant which I now know

> was related to the gluten intolerance destroying

> part of my small intestine but didn't know then.

> Then rosacea.

> Then, I found out I had interstitial cystitis, a

> chronic pain condition of the bladder, involving the

> mast cells.

> Then, gluten intolerance.

> Then, lichen sclerosis, etc.

>

> So... I'm just adding it all up and I know many

> folks on this list have a similar list of illnesses

> that are most probably related. Most of my problems

> seem to be related to my immune system overreacting

> to things.

>

> There could be one trigger but my guess is there is

> a list... gluten, yeast, mold, medications, toxic

> chemicals, hormonal changes, bacteria, E Coli, etc.

> It's hard to know. But, eliminating wheat is a

> start for me. I keep thinking some kind of detox

> couldn't hurt.

> I keep thinking of my friend who went through

> chemotherapy three times and now has lupus. And my

> grandmother who got lupus and her family thinks it

> was caused by a reaction to a heart medication she

> was on. I often worry about taking medications daily

> because you just never know. I just started taking

> that sun chlorella (algae) because it's supposed to

> help detox your body so it couldn't hurt and is all

> natural. : ) AA gives it out to alcoholics for

> alcohol poisoning. It was also given to some folks

> who had arsenic poisoning and it supposedly helped.

> I'll keep you posted.

>

>

__________________________________________________

[Guest guest]

I have tried to trace what might have initially triggered my VVS and since I started having symptoms only a few months after losing my virginity, I keep thinking the only things that really changed for me were starting on the birth control pill and having my first yeast infection in at least 10 years and using Monistat to cure it, and having my first urinary tract infection. At that point my diet did not really change and I know that I didn't have any pain during the first few months of having sexual intercourse because I was able to enjoy it for a short time before developing VVS. The first thing my doctor did was take me off that birth control pill. I'm curious to know how many folks were on the birth control pill when they first developed VVS?

,

You say that your diet didn't change, but i don't think you can dismiss

diet as a precipitating factor that easily. Even if it took the sexual activity,

b.c., yeast infection, UTI , and various drug treatments (that's a lot of stressors!) to finally trigger the first signs of vulvar pain, i think it's quite

possible that years of underlying dietary issues could be what set you

up for "the last straw." I actually feel that's true for many of us. JMO

Hollis

[Guest guest]

Hey Arline,

How do you know if your medications have gluten in them? What would I be looking for in the list of ingredients?

I'm good about the diet except for the occasional hidden ingredient in my salad dressings when I eat out. Or, those occasions when I'm staying at someone's house and I tell them about my diet but there is some hidden ingredient they didn't know contains gluten... like the time my Mom made me buckwheat pancakes and didn't know that there was wheat flour in the buckwheat pancake mix. Buckwheat they say is actually not wheat and is ok. Or cornbreads, etc. Taco sauces is another... at home I bought gluten free taco seasoning. When I'm out at a Mexican restaurant I'll order the corn tortillas instead of flour but I'm thinking there might be a little bit of wheat flour in some of these taco sauces? I do eat out some and try to stick to salads and dressings that I feel pretty sure don't have wheat flour.

It seems most everything does, though.

I think they decided oats were ok? (Just had oatmeal this morning)... Maybe there's still some question about that?

And as far as alcohol... I try to stick to rum and coke or something like that. I've read different things so am not sure whether bourbon is ok? I really understand my hyperglycemic friend, now, who would never eat out because she couldn't be certain what was in the food so she cooked always for herself. It's hard to do, though.

As for dairy.... haven't been tested for that. I drink soy milk. But, I do eat cheese. Maybe I should test for casein too?

Re: V pain & Excess Nerve proliferation (MORE)

Hi ,When you are gluten sensitive and until your body iscompletely free of the antibodies that are caused byyour body constantly attacking the gluten, which isyour immune system reacting to the poison (and that iswhat it is to you) your whole body will continue todeteriorate.All of your problems can be and probably are relatedto gluten and probably dairy.If you are eating any at all--wheat, barley, rye,oats, and any processed or prepared food or drink andeven in your medications, you are still gettinggluten. Your diet has to be perfect. You need to makesure that everything that goes into your mouth iscompletely gluten free or you don't put it in yourmouth.I constantly had ear infections, sinus infections,bronchitis, allergies, bladder infections, lactoseintolerant, rosacea, lichen sclerosis, (12 biopsies),litoral pain, vulvar itching and burning and more.Those things went away when my diet was changed.Thank you for writing this email. I hope you canchange this for yourself. Your whole body isconstantly in attack mode against itself. HOpefullywhen you get rid of the gluten entirely it will calmdown and you will have less pain and get normal.Gluten sensitivity is not just an allergy but aserious damaging destroying disease. It can destroyany organ in your body and does. Good luck with this.Arline--- Berry <lberryinfoave (DOT) net> wrote:> My thinking is....I know I have seen just a gradual> deterioration of my health over the last 15 years> and everything seems to be related in some way. And> that's not unusual I guess. > First, the vvs....> > then I suddenly developed bad allergies(never had> them as a kid) and after several years of > earraches, sinus infections, headaches, constant> nasal drip and a hacking cough, I finally got tested> and put on allergy shots, which I've been on now for> about 9 or 10 years. And Allegra and Sinuvent which> I take daily and have for years. Every time I go a> month without my shot I get a sinus infection. > > Then, I became lactose intolerant which I now know> was related to the gluten intolerance destroying> part of my small intestine but didn't know then.> Then rosacea. > Then, I found out I had interstitial cystitis, a> chronic pain condition of the bladder, involving the> mast cells. > Then, gluten intolerance. > Then, lichen sclerosis, etc.> > So... I'm just adding it all up and I know many> folks on this list have a similar list of illnesses> that are most probably related. Most of my problems> seem to be related to my immune system overreacting> to things. > > There could be one trigger but my guess is there is> a list... gluten, yeast, mold, medications, toxic> chemicals, hormonal changes, bacteria, E Coli, etc. > It's hard to know. But, eliminating wheat is a> start for me. I keep thinking some kind of detox> couldn't hurt. > I keep thinking of my friend who went through> chemotherapy three times and now has lupus. And my> grandmother who got lupus and her family thinks it> was caused by a reaction to a heart medication she> was on. I often worry about taking medications daily> because you just never know. I just started taking> that sun chlorella (algae) because it's supposed to> help detox your body so it couldn't hurt and is all> natural. : ) AA gives it out to alcoholics for> alcohol poisoning. It was also given to some folks> who had arsenic poisoning and it supposedly helped.> I'll keep you posted. > > __________________________________________________

[Guest guest]

Hey Arline,

How do you know if your medications have gluten in them? What would I be looking for in the list of ingredients?

I'm good about the diet except for the occasional hidden ingredient in my salad dressings when I eat out. Or, those occasions when I'm staying at someone's house and I tell them about my diet but there is some hidden ingredient they didn't know contains gluten... like the time my Mom made me buckwheat pancakes and didn't know that there was wheat flour in the buckwheat pancake mix. Buckwheat they say is actually not wheat and is ok. Or cornbreads, etc. Taco sauces is another... at home I bought gluten free taco seasoning. When I'm out at a Mexican restaurant I'll order the corn tortillas instead of flour but I'm thinking there might be a little bit of wheat flour in some of these taco sauces? I do eat out some and try to stick to salads and dressings that I feel pretty sure don't have wheat flour.

It seems most everything does, though.

I think they decided oats were ok? (Just had oatmeal this morning)... Maybe there's still some question about that?

And as far as alcohol... I try to stick to rum and coke or something like that. I've read different things so am not sure whether bourbon is ok? I really understand my hyperglycemic friend, now, who would never eat out because she couldn't be certain what was in the food so she cooked always for herself. It's hard to do, though.

As for dairy.... haven't been tested for that. I drink soy milk. But, I do eat cheese. Maybe I should test for casein too?

Re: V pain & Excess Nerve proliferation (MORE)

Hi ,When you are gluten sensitive and until your body iscompletely free of the antibodies that are caused byyour body constantly attacking the gluten, which isyour immune system reacting to the poison (and that iswhat it is to you) your whole body will continue todeteriorate.All of your problems can be and probably are relatedto gluten and probably dairy.If you are eating any at all--wheat, barley, rye,oats, and any processed or prepared food or drink andeven in your medications, you are still gettinggluten. Your diet has to be perfect. You need to makesure that everything that goes into your mouth iscompletely gluten free or you don't put it in yourmouth.I constantly had ear infections, sinus infections,bronchitis, allergies, bladder infections, lactoseintolerant, rosacea, lichen sclerosis, (12 biopsies),litoral pain, vulvar itching and burning and more.Those things went away when my diet was changed.Thank you for writing this email. I hope you canchange this for yourself. Your whole body isconstantly in attack mode against itself. HOpefullywhen you get rid of the gluten entirely it will calmdown and you will have less pain and get normal.Gluten sensitivity is not just an allergy but aserious damaging destroying disease. It can destroyany organ in your body and does. Good luck with this.Arline--- Berry <lberryinfoave (DOT) net> wrote:> My thinking is....I know I have seen just a gradual> deterioration of my health over the last 15 years> and everything seems to be related in some way. And> that's not unusual I guess. > First, the vvs....> > then I suddenly developed bad allergies(never had> them as a kid) and after several years of > earraches, sinus infections, headaches, constant> nasal drip and a hacking cough, I finally got tested> and put on allergy shots, which I've been on now for> about 9 or 10 years. And Allegra and Sinuvent which> I take daily and have for years. Every time I go a> month without my shot I get a sinus infection. > > Then, I became lactose intolerant which I now know> was related to the gluten intolerance destroying> part of my small intestine but didn't know then.> Then rosacea. > Then, I found out I had interstitial cystitis, a> chronic pain condition of the bladder, involving the> mast cells. > Then, gluten intolerance. > Then, lichen sclerosis, etc.> > So... I'm just adding it all up and I know many> folks on this list have a similar list of illnesses> that are most probably related. Most of my problems> seem to be related to my immune system overreacting> to things. > > There could be one trigger but my guess is there is> a list... gluten, yeast, mold, medications, toxic> chemicals, hormonal changes, bacteria, E Coli, etc. > It's hard to know. But, eliminating wheat is a> start for me. I keep thinking some kind of detox> couldn't hurt. > I keep thinking of my friend who went through> chemotherapy three times and now has lupus. And my> grandmother who got lupus and her family thinks it> was caused by a reaction to a heart medication she> was on. I often worry about taking medications daily> because you just never know. I just started taking> that sun chlorella (algae) because it's supposed to> help detox your body so it couldn't hurt and is all> natural. : ) AA gives it out to alcoholics for> alcohol poisoning. It was also given to some folks> who had arsenic poisoning and it supposedly helped.> I'll keep you posted. > > __________________________________________________

[Guest guest]

Yes, that could well be true. I lived off of fast food, especially chicken sandwiches, cokes and greasy fries, pop tarts and all kinds of horrible processed foods for years. But, there must have been a secondary trigger like you said because I went from enjoying sex to having horrible pain all within a short few months.

Re: V pain & Excess Nerve proliferation (MORE)

, You say that your diet didn't change, but i don't think you can dismiss diet as a precipitating factor that easily. Even if it took the sexual activity, b.c., yeast infection, UTI , and various drug treatments (that's a lot of stressors!) to finally trigger the first signs of vulvar pain, i think it's quite possible that years of underlying dietary issues could be what set you up for "the last straw." I actually feel that's true for many of us. JMO Hollis

[Guest guest]

Hi ,

> Hey Arline,

> How do you know if your medications have gluten in

> them?

This is very hard. There is a website

http://www.glutenfreedrugs.com (I think that is the

address, at least the glutenfreedrugs.com is the

thing)

Unfortunately the ingredients in medications change

all the time especially the fillers of starch. Also

the pharmas are so busy changing to generic drugs that

what you may know about the ingredients in the brand

name drug is very different from what is in the

generic. I always ask the dog to write the

prescription for " Brand Name Required " but even so,

the pharmas will change it without your knowledge, so

they have to be told also. I check the website first,

give a copy to my doctor for my file, cross my

fingers, and swear a lot.

What would I be looking for in the list of

> ingredients?

Sometimes you can look the drug up on the internet and

see if it is gluten free. Sometimes you can call the

company who made it. Sometimes the pharmacist can

help. Good luck. They seem to mostly be about

counting.

>

> I'm good about the diet except for the occasional

> hidden ingredient in my salad dressings when I eat

> out.

Yes, the salad dressing is a problem. Often when I go

to restaurants I take my own.

Or, those occasions when I'm staying at

> someone's house and I tell them about my diet but

> there is some hidden ingredient they didn't know

> contains gluten... like the time my Mom made me

> buckwheat pancakes and didn't know that there was

> wheat flour in the buckwheat pancake mix. Buckwheat

> they say is actually not wheat and is ok. Or

> cornbreads, etc. Taco sauces is another... at home I

> bought gluten free taco seasoning. When I'm out at a

> Mexican restaurant I'll order the corn tortillas

> instead of flour but I'm thinking there might be a

> little bit of wheat flour in some of these taco

> sauces?

Yes, even the corn tortillas mostly have wheat in

them. I buy the El Paso brand WHITE CORN tacos which

supposedly are gluten free and no other to my

knowlege?? The El Paso orginal flavor taco sauce is

okay I think.

I do eat out some and try to stick to salads

> and dressings that I feel pretty sure don't have

> wheat flour.

> It seems most everything does, though.

> I think they decided oats were ok?

There is still some question and even if one could

find oats that had not been milled with other grains,

a lot of people are very sensitive to oats. I don't

eat them and don't think you should. (Just had oatmeal

> this morning)... Maybe there's still some question

> about that?

> And as far as alcohol... I try to stick to rum and

> coke or something like that.

Try to look on the internet to make sure the brand of

rum you are buying is gluten free. They often add

flavors to them.

I've read different

> things so am not sure whether bourbon is ok?

Boubon is corn based but that doesn't mean it doesn't

have gluten blended with it. Wine is less likely to

have gluten but even so you should know exactly what

you are drinking.

I

> really understand my hyperglycemic friend, now, who

> would never eat out because she couldn't be certain

> what was in the food so she cooked always for

> herself. It's hard to do, though.

Yes,

Very.

>

> As for dairy.... haven't been tested for that. I

> drink soy milk. But, I do eat cheese. Maybe I should

> test for casein too?

Dr. Fine's dairy test is for several proteins in milk

including casein. Besides most cheese has gluten,

believe it or not. The blue on blue cheese is usually

mold grown on bread.

This is hard but you have to do it. It becomes a life

style and eventually you wouldn't think of taking a

chance on eating something that might have gluten in

it because as your body clears and you feel less pain,

you will be able to tell when you have eaten something

with gluten.

Don't give up. Your life really depends upon it.

Arline

__________________________________________________

[Guest guest]

Thanks, something upset my stomach this afternoon and I was trying to figure out if it was the oatmeal or all of the cheese cubes and I ate at the party last night. : )

Re: V pain & Excess Nerve proliferation (MORE)

Hi ,> Hey Arline, > How do you know if your medications have gluten in> them?This is very hard. There is a websitehttp://www.glutenfreedrugs.com (I think that is theaddress, at least the glutenfreedrugs.com is thething)Unfortunately the ingredients in medications changeall the time especially the fillers of starch. Alsothe pharmas are so busy changing to generic drugs thatwhat you may know about the ingredients in the brandname drug is very different from what is in thegeneric. I always ask the dog to write theprescription for "Brand Name Required" but even so,the pharmas will change it without your knowledge, sothey have to be told also. I check the website first,give a copy to my doctor for my file, cross myfingers, and swear a lot.What would I be looking for in the list of> ingredients?Sometimes you can look the drug up on the internet andsee if it is gluten free. Sometimes you can call thecompany who made it. Sometimes the pharmacist canhelp. Good luck. They seem to mostly be aboutcounting. > > I'm good about the diet except for the occasional> hidden ingredient in my salad dressings when I eat> out.Yes, the salad dressing is a problem. Often when I goto restaurants I take my own.Or, those occasions when I'm staying at> someone's house and I tell them about my diet but> there is some hidden ingredient they didn't know> contains gluten... like the time my Mom made me> buckwheat pancakes and didn't know that there was> wheat flour in the buckwheat pancake mix. Buckwheat> they say is actually not wheat and is ok. Or> cornbreads, etc. Taco sauces is another... at home I> bought gluten free taco seasoning. When I'm out at a> Mexican restaurant I'll order the corn tortillas> instead of flour but I'm thinking there might be a> little bit of wheat flour in some of these taco> sauces?Yes, even the corn tortillas mostly have wheat inthem. I buy the El Paso brand WHITE CORN tacos whichsupposedly are gluten free and no other to myknowlege?? The El Paso orginal flavor taco sauce isokay I think.I do eat out some and try to stick to salads> and dressings that I feel pretty sure don't have> wheat flour. > It seems most everything does, though.> I think they decided oats were ok?There is still some question and even if one couldfind oats that had not been milled with other grains,a lot of people are very sensitive to oats. I don'teat them and don't think you should. (Just had oatmeal> this morning)... Maybe there's still some question> about that?> And as far as alcohol... I try to stick to rum and> coke or something like that.Try to look on the internet to make sure the brand ofrum you are buying is gluten free. They often addflavors to them.I've read different> things so am not sure whether bourbon is ok?Boubon is corn based but that doesn't mean it doesn'thave gluten blended with it. Wine is less likely tohave gluten but even so you should know exactly whatyou are drinking.I> really understand my hyperglycemic friend, now, who> would never eat out because she couldn't be certain> what was in the food so she cooked always for> herself. It's hard to do, though.Yes,Very. > > As for dairy.... haven't been tested for that. I> drink soy milk. But, I do eat cheese. Maybe I should> test for casein too? Dr. Fine's dairy test is for several proteins in milkincluding casein. Besides most cheese has gluten,believe it or not. The blue on blue cheese is usuallymold grown on bread.This is hard but you have to do it. It becomes a lifestyle and eventually you wouldn't think of taking achance on eating something that might have gluten init because as your body clears and you feel less pain,you will be able to tell when you have eaten somethingwith gluten.Don't give up. Your life really depends upon it.Arline__________________________________________________

[Guest guest]

Hi Hollis,

I don't know the answer to what you are asking. This

has come up a lot of time with people.

Firstly there isn't much to do about your friend not

getting tested but drive yourself to nervous collapse.

People just don't want to change the way they eat and

until they get desperate enough, and many never do,

they won't. Too bad as it can have serious and fatal

consequences.

About the gluten on his saliva, mouth etc. When others

have talked about this I have just kind of smiled and

not paid a lot of attention thinking it isn't too

important. But, the truth is some people are VERY

sensitive and can get reactions to it. I am afraid you

will have to decide what you want and gamble on your

decision either way. Maybe requesting the

toothbrushing for awhile will help and wait to see if

anything transpires in his attitude.

Unfortunately people often think this is a big joke

and that the gluten sensitive person is slightly nutz

instead of trying to help. They say time heals all

things. (I'm not sure about that)

You could offer to pay for his test. LOL I have done

that with friends and family and mostly that doesn't

work. Even if the test was positive, they still go to

their docs to get the " real " test which is usually

negative as it isn't a real test at all or this would

be easy. It is very frustrating and I suggest you

don't worry about it too much but take care of

yourself in the best way you can. I am glad you seem

to be doing the right thing and I hope it is helping

you.

Arline

__________________________________________________