Nerve Pain - Pelvic Spasms (Arline)

[Guest guest]

Arline,

Thank you. As usual, you're a wealth of information. I went to the grocery store this morning and refused to even walk down an aisle that held anything with gluten or any sort of starchy carb. I've spent a lot of time crying today (we've all been there) because I feel like I've been poisening myself. I knew there was a link with the food I was eating. I started telling doctors that 10 years ago. My diet was crystal clean for 6 years without a diagnosis. It was the move to NY (20 hour work days and no time to think about what I was eating) and the fact that the day to day pain was gone, that created this. I cleaned out my diet several times while I lived there, but then when I realized the pain was still there (with attempted intercourse), I thought obviously the diet wasn't the link and went back to having the occasional fat free, sugar free muffin or baked potato.

While I listened to what you said and what I experienced myself - I never knew about the connection to nerve pain. I never knew I could be creating unrepairable damage ( if it's unrepairable - let's hope not). I feel like a mother who fed her children meat with ecoli in it - only I fed it to myself!

I guess all I can do is start with today. I don't really need a test to prove to myself I'm reacting to these foods. I feel the instant reaction when I eat them.

I've read about the dairy connection as well - I've just never felt a real reaction to it - unless I was eating frozen yogurt with sugar in it - at least I assumed it was the sugar. So of course today, while I was avoiding the carb aisles, I bought fat free, sugar free ice cream bars! I needed something to get me through the weaning process!

As to Green, he wasn't my doctor. I just met him during one of his lectures - so I can't say he knew all the details of my case. But yes, he admits it doesn't always show up in blood work - that's why he insists on a biopsy - which I simply wasn't going to do.

I'm going to make an appointment to be evaluated by this physical therapist Dr. Sobel recommended. I want to hear what she has to say. So you never had to take any drugs to fix nerve damage or do PT? It was just cleaning up your diet? I don't know which one scares me more. I don't do well on drugs, particularly antidepresants - even at the lowest dosage.

Thanks again for everything. I so apppreciate your being here. It's been a difficult 36 hours.....

J. Vote for your city's best dining and nightlife. City's Best 2008.

[Guest guest]

Hi J,

I hope this all helps you as you have been through a

lot with this with seeming few good results.

The nerve thing is really interesting to me. Finally

as time as gone by I have really begun to understand

that the nerves are everything. If the nerves aren't

functioning for example we can't even be nourished

correctly and enzymes, hormones, etc., can't even be

transmitted to where they are supposed to go. The

nerves control everything and when there is a disease

attacking the nervous system everything seems to fall

apart even beyond the muscles as in possibly our case.

Also we can be pretty sure that other nerves, beyond

the ones that pain us, are being affected too.

I think it would be better if you were tested not only

for the gluten but for the other high allergen foods.

I know that if one is forming antibodies to gluten

they probably form similar antibodies to milk, (and

maybe yeast, eggs, and soy). They can really tear your

body up if you re reacting to this. But Rome wasn't

built in a day and if you are becoming aware and ready

to do something about it--Great!! It isn't easy but

it is worth it.

>

> Thank you. As usual, you're a wealth of information.

> I went to the grocery

> store this morning and refused to even walk down an

> aisle that held anything

> with gluten or any sort of starchy carb.

That sounds like a great start!!

I've spent

> a lot of time crying today

> (we've all been there) because I feel like I've been

> poisening myself. I knew

> there was a link with the food I was eating. I

> started telling doctors that

> 10 years ago.

If you really are gluten senstive, turn those tears

into relief that you finally can get better. )

My diet was crystal clean for 6 years

> without a diagnosis. It

> was the move to NY (20 hour work days and no time

> to think about what I was

> eating) and the fact that the day to day pain was

> gone, that created this. I

> cleaned out my diet several times while I lived

> there, but then when I realized

> the pain was still there (with attempted

> intercourse), I thought obviously

> the diet wasn't the link and went back to having

> the occasional fat free,

> sugar free muffin or baked potato.

Potatoes won't hurt. Surgar free muffins won't hurt if

you don't make them with the gluten flours. Try corn

meal muffins. You can buy gluten free mixes.

>

> While I listened to what you said and what I

> experienced myself - I never

> knew about the connection to nerve pain. I never

> knew I could be creating

> unrepairable damage ( if it's unrepairable - let's

> hope not). I feel like a mother

> who fed her children meat with ecoli in it - only I

> fed it to myself!

Yes, that is what you have been doing but remember

this stuff is addictive--gluten and milk have peptides

that fit into receptors in the brain that have opioid

responses.--very addictive comfort drugg yourself

foods. If kids were taken off gluten and milk they

would do a lot better in life and school and feel a

lot better.

>

> I guess all I can do is start with today. I don't

> really need a test to

> prove to myself I'm reacting to these foods. I feel

> the instant reaction when I

> eat them.

Yes, start with today.

>

> I've read about the dairy connection as well - I've

> just never felt a real

> reaction to it - unless I was eating frozen yogurt

> with sugar in it - at least

> I assumed it was the sugar. So of course today,

> while I was avoiding the carb

> aisles, I bought fat free, sugar free ice cream

> bars! I needed something to

> get me through the weaning process!

Most ice creams and yogurts contain gluten by the way.

It is sometimes hidden by code words like " natural

flavors, modified starch, starch, and others),

Processed food is a real no no unless you know exactly

what is in it and it is almost impossible to know.

>

> As to Green, he wasn't my doctor. I just met

> him during one of his

> lectures - so I can't say he knew all the details of

> my case. But yes, he admits

> it doesn't always show up in blood work - that's why

> he insists on a biopsy -

> which I simply wasn't going to do.

As I said, the biopsy are another scam in my opinion.

Just keep the money flowing.

>

> I'm going to make an appointment to be evaluated by

> this physical therapist

> Dr. Sobel recommended. I want to hear what she has

> to say. So you never had to

> take any drugs to fix nerve damage or do PT? It was

> just cleaning up your

> diet?

No drugs or PT ever.

I don't know which one scares me more. I

> don't do well on drugs,

> particularly antidepresants - even at the lowest

> dosage.

Wouldn't fix this anyway.

>

> Thanks again for everything. I so apppreciate your

> being here. It's been a

> difficult 36 hours.....

>

Best wishes with this J. Try to learn as much about

this as possible. It is a complex disease.

Arline