advice

[Guest guest]

Hi everyone,

I am probably having surgery soon and would like to

solicit advice from any and all of you about

nutritional recommendations. Nothing is as boring as

other people's medical problems so I'll try to make

this brief. I have degenerative disc disease of

idiopathic origin. Basically my spine is coming apart

at the seams. It's been 18 years of constant, severe

pain. My whole adult life has been spent pretty much

lying on the couch. The doctors can do nothing for me,

up until now. In Europe they have replacement discs,

like the replacement hips and knees available here in

the USA. I've been in touch with the expert doctor in

Germany. His suggestions is 1 level spinal fusion (at

L5-S1, which has a grade 4 derangement) and 2 level

disc replacements (L4-5 and L3-4). I am probably going

to proceed with his recommendations. But sometimes

with spinal fusion the patient's spine refuses to

fuse. That's the big worry. So I'm wondering if

there's nutritional things I can do pre- and post-op

to maximize my bodies ability to grow bone. Calcium I

guess would be the obvious. I already take cod liver

oil--make a larger dose? I'm not opposed to

supplements (I'm not opposed to anything that will

make my life less painful). Any and all advice would

be appreciated.

Lierre

__________________________________________________

[Guest guest]

Age is a factor. Also, make sure you aren't lactose and/or casein intolerant; these problems can cause similar symptoms and are very common in people with CD.

H.

In a message dated 5/18/06 12:13:39 PM, mrykat59@... writes:

from my experience, expecting immediate relief by going on a gluten-free diet is pretty unrealistic--although it may be true for some people, it wasn't true for me nor my brother.

[Guest guest]

Joan,

It sounds very likely to me that you have a gluten allergy. I don't

know what you mean by " gluten challenge " but here's my advice...

Myself and many others have found it extremely difficult to maintain a

gluten free diet. Fortunately there are great things like this group,

new gluten free foods, etc., but a lot of people wouldn't want to deal

with it unless they are 100% sure... so the endoscopy is the only

thing that is 100% accurate (and even this will have some extremely

rare mistakes, as I learned at the Stanford conference) and it is up

to you to do decide whether to do it or not. My advice here is if you

do it, DEFINITELY use anesthesia. I couldn't, because I didn't have a

ride home aftewards and they won't give it to you in that case. They

told me it's done without anesthsia in some places and it wouldn't be

so bad, but it was horrific for me. With anesthesia I imagine it

wouldn't be so bad. A major consideration here is also what happens

with insurance companies when you have a positive biopsy. Basically

they won't insure you. If you have a group plan through work or a

spouse and you don't think you'll have to worry about getting health

insurance as an individual it's different. But things can change of

course.

I should also mention with regard to your going on or off the diet.

To me it doesn't ever make sense to go back to eating gluten for a

test. That was part of the protocol in 1970 and it really doesn't

make sense. The stomach takes 1 (i think you have to be really lucky

for that too) to 5 years to work normally. Also the timeframe you've

avoided gluten has been much too short to see changes and you are

probably ingesting some gluten anyway wiithout realizing it). At

first I thought recovery would be quicker because it is said that the

stomach lining replaces itself every 3 months, but there's other

factors... it basically just doesn't work that way. Sorry if this

email is depressing. When I have Crave brownies in San Francisco

things feel alright

Naren

On 5/18/06, jmardesi <jmardesi@...> wrote:

> Just wondering what people think I should do:

>

> I thought I had a parasite and went to the doc in Mar 05: tested

> positive for anti-gliadin antibody (I think TTG)

> Mar 05: went on gluten free diet; didn't see a huge difference.

> Mar 06: tested positive for celiac gene

> Mar-present: At advice of gastroenterologist, did a gluten challenge-

> didn't really have major symptoms.

>

> Should I do a biopsy? Anyone have any stories on what its like? It

> seems as if I'm allergic gluten, but being off it never really made me

> feel 100% better.

>

> joan

>

>

>

>

>

>

>

>

[Guest guest]

It's been my experience that going on a gluten-free diet meant that after a *long* period of time, some of the symptoms were relieved. My brother has never seen relief from his symptoms--both of us have been on strict, and I mean strict, gluten-free diets for about 2-3 years. We both have had gliaden testing as well as DNA testing and have the gene for celiac as well as the gene for gluten intolerance. I think in some cases the relief experienced from being on a gluten-free diet depends on the amount of damage already done to the lining of the intestines (and possibly elsewhere) and it takes quite a long time to heal if there is damage. I am of the opinion that more testing will not provide me with any more information after years of being sick and misdiagnosed. Clearly, I will need to remain gluten-free for life. I have been exposed to gluten once or twice by mistake, and have symptoms days later. So, from my

experience, expecting immediate relief by going on a gluten-free diet is pretty unrealistic--although it may be true for some people, it wasn't true for me nor my brother.jmardesi <jmardesi@...> wrote: Just wondering what people think I should do: I thought I had a parasite and went to the doc in Mar 05: tested positive for anti-gliadin antibody (I think TTG) Mar 05: went on gluten free diet; didn't see a huge difference. Mar 06: tested positive for celiac gene Mar-present: At advice of gastroenterologist, did a gluten challenge- didn't really have major symptoms. Should I do a biopsy? Anyone have any stories on what its like? It seems as if I'm allergic gluten, but being off it never really made me feel 100% better. joan

Be a chatter box. Enjoy free PC-to-PC calls with Messenger with Voice.

[Guest guest]

Have you been tested for any other food allergies? Some are often associated

with gluten

problems, such as casein, soy, yeast or lactose etc. Just make sure you use a

good test for

the allergies - there are alot of less-useful ones out there. Hope you find

something to

help.

Ruth

>

> Just wondering what people think I should do:

>

> I thought I had a parasite and went to the doc in Mar 05: tested

> positive for anti-gliadin antibody (I think TTG)

> Mar 05: went on gluten free diet; didn't see a huge difference.

> Mar 06: tested positive for celiac gene

> Mar-present: At advice of gastroenterologist, did a gluten challenge-

> didn't really have major symptoms.

>

> Should I do a biopsy? Anyone have any stories on what its like? It

> seems as if I'm allergic gluten, but being off it never really made me

> feel 100% better.

>

> joan

>

[Guest guest]

Joan,

Are you finding that even gluten free you are still having other problems? That was the case for me. I ended up having allergies to a lot of different food and environmental agents so gluten was only part of the picture.

Because docs were not helpful with all of these other issues, I sought out a nutritionist and went the alternative medicine route.

On 5/18/06, jmardesi <jmardesi@...> wrote:

Just wondering what people think I should do:I thought I had a parasite and went to the doc in Mar 05: tested

positive for anti-gliadin antibody (I think TTG)Mar 05: went on gluten free diet; didn't see a huge difference.Mar 06: tested positive for celiac geneMar-present: At advice of gastroenterologist, did a gluten challenge-

didn't really have major symptoms.Should I do a biopsy? Anyone have any stories on what its like? Itseems as if I'm allergic gluten, but being off it never really made mefeel 100% better.joan