Nerve Pain - Pelvic Spasms (Arline)

[Guest guest]

Hi Arline,

Thanks for sending the article. I've been tested for Celiac three times. It never shows up and I haven't been really keen on having a biopsy - without a sign that I needed one. I'm also not having any sort of absorption problems that can be detected.

I know what you're saying about the main stream doctors - I met with Green (Celiac Disease : A Hidden Epidemic, for any of you that don't know) while I was living in New York - and while he believed that it was possible that I had celiac (even though it didn't show up in my blood work), he wasn't fond of the lab you mentioned. He actually talked about them during a lecture.

I don't doubt that the sensitivies exist for me at all - but what I never knew was that there was a link between them and nerve pain. So are you saying, if I cleaned out my diet (again), that the nerve pain would go away? Or that the damage is already done and I have to go through physical therapy? Or both?

I asked Dr. Sobel whether going through this would allow me to eat normally again and he said, it might still irritate the problem - but what I hear you (and the article) saying is, that it caused the problem. So what do I do? And what about this pain on the sacral nerve? Is that something that would have started because of the sensitivies? I thought it was a back problem - that maybe was touching on a nerve.

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

[Guest guest]

Hi J,

>

> Thanks for sending the article. I've been tested for

> Celiac three times. It

> never shows up and I haven't been really keen on

> having a biopsy - without a

> sign that I needed one. I'm also not having any sort

> of absorption problems

> that can be detected.

I also was tested for Celiac many times throughout my

life and it was always not adequate for a diagnosis of

Celiac. Celiac just talks about damage done to the

small intestine. Gluten Sensitivity and the Enterolab

tests from the research of twenty years that has been

done talks a lot about nerve problems and other

conditions resulting from this. They are two cats of a

different color. Enterolab finds IgA gluten specific

antibodies more easily in the intestines than the

blood tests do as that is where the reactions take

place. By the time the antibodies get to the blood

stream they are so diffused or weak they are hard to

find. It doesn't matter where you find them. They are

well known, recognizable wherever you find

them--whether in the kidneys from clogging them up, in

the skin, in the small intestine, in the blood, etc.

The important thing is to have a test where you can

actually find them. The blood tests are not quality

tests and in my experience a total waste of time. (and

a waste of a life in many cases).

There are even different genes involved in the Celiac

and the Gluten Sensitivity conditions. My

granddaughter has both. One main Celiac Gene and one

Gluten Sensitivity Gene. She has the potential of

being twice as ill as I and her father have been.

I don't want to go into Green and his theories.

But I have strong feelings about him being part of the

problem. His career depends upon his test being used

(tranglutiminase) and books sold, etc., in my opinion.

If the blood tests work, that means the patient is

lucky. If they don't she should look to something

else. If you keep following the people who can't

diagnose you and believing them you will not get well.

>

> I know what you're saying about the main stream

> doctors - I met with

> Green (Celiac Disease : A Hidden Epidemic, for any

> of you that don't know)

> while I was living in New York - and while he

> believed that it was possible that

> I had celiac (even though it didn't show up in my

> blood work), he wasn't

> fond of the lab you mentioned. He actually talked

> about them during a lecture.

So, he thinks it is possible that you may have it but

his tests can't diagnose it? I think that is what I

have been saying for many years. (I am not alone).

Green is a mainstream doc--very.

>

> I don't doubt that the sensitivies exist for me at

> all - but what I never

> knew was that there was a link between them and

> nerve pain. So are you saying,

> if I cleaned out my diet (again), that the nerve

> pain would go away? Or that

> the damage is already done and I have to go through

> physical therapy? Or both?

I am saying that it will continue unless you find out

if you are gluten sensitive and stop eating it. If you

are you will likely also find that you are milk

sensitive and it is looking like casein and gluten

cross react with each other. (also candida). I had

huge relief from all the pain I had and for me it went

away. Nerve damage is the hardest to heal but you have

to find out whether they will heal. Certainly you will

only get worse if this or whatever it is happens not

to be found.

I wonder why Green didn't mention the nerve part

of the disease?? (doesn't he know??) There is a big

link between gluten and nerves and the research is

growing everyday. I spent decades with such pain in my

lower back which later I realized was neuromuscular

from gluten. It totally went away on the diet and I

have never had it again. I could hardly get out of

bed, get into a car (because my back would seize up so

badly and the pain was unbelievable). There is a

neurologist at Cornell (Latov) who has done lots of

research in this area. There is another doc, maybe a

gastroenterologist (can't remember) in the UK who hs

done fantastic research on the connection between

gluten and neuropathy. He name is s

Hadjiasseliov. His work is mostly easily accessible on

the internet through google.

There is also a lot of connection between gluten

sensitivity/celiac and small nerve fibers. It is the

proliferation of small nerve fibers that apparently

cause vestibulitis.

You need an accurate test and the only one in the

country I know about is the Enterolab test. There has

been talk of a saliva test now that is supposed to be

accurate but I don't know anything about it.

The small intestine is about 25 feet long and taking a

biopsy of it is like finding a needle in a haystack.

Regardless of what they say, it also isn't accurate,

or necessary for finding the antibodies in the body

that do the damage.

>

> I asked Dr. Sobel whether going through this would

> allow me to eat normally

> again and he said, it might still irritate the

> problem - but what I hear you

> (and the article) saying is, that it caused the

> problem. So what do I do?

Celiac and Gluten Sensitivity are autoimmune diseases

and not allergies. If this is what you have you will

never be able to eat gluten (and likely other things

like milk products). I don't know who Sobel is

actually but he ought to know that if this is what he

was referring to. Even when going gluten free, which

is difficult, it takes awhile for all those antibodies

to disappear and all the damage that has been done to

repair.

What you do is get the enterolab test and then put

this away forever because you can believe the results

here.

And

> what about this pain on the sacral nerve? Is that

> something that would have

> started because of the sensitivies?

Yes. It doesn't matter what nerve is attacked. It can

be anywhere and usually is.

I thought it was

> a back problem - that

> maybe was touching on a nerve.

I thought mine was back problem, too, and for

decades went all the time to chiropractors. I don't

have any pain now at all.

I am still here spouting the same stuff only because I

can't stand people being in pain when there might be a

way to stop it. Also, this is genetic and I have a

family with the same disease and I want to keep

learning. Hope this helps.

>

> Arline

>