Re: HJ, am I maybe celiac after all? (was Rice and gluten)

[Guest guest]

At 05:42 PM 4/5/2004, you wrote:

>So I'm probably being a bit dim here and you've probably said this

>100+ times already, but have I been deluding myself all along? Do I

>need to get tested for all the Ig's to see what's really going on?

>

>Thanks yet again HJ, deb

ya know, there is an email that just came on the celiac list that i think

might be interesting to you. i'll paste the most important part first, but

the rest below:

I was also told that sticking to the diet is extremely important, more

important than getting the biopsy. I was told by another that their doctor

considered improvement on the diet, coupled with the positive antibodies,

his gold standard, in his professional judgment.

so, ya know. you can have the test or not, but if you go gluten free and

you get better, that's pretty much that.

here's the whole email:

Thank you everyone for sharing with me your experiences with mainstream and

alternative medicine, and how it relates to your diagnosis and decision to

go on the GF diet.

Out of the couple dozen responses I received, only one person said that

they had experienced disbelief on the part of an M.D. as to their CD status.

An overwhelming majority of those who responded felt that a gluten

challenge was unnecessary for their purposes, because they improved so much

on the GF diet, and nobody in health care questioned them when they said

they were celiac.

" Listen to your gut " was the message, no pun intended. Several people wrote

that they had been diagnosed by alternative practitioners or even figured

it out for themselves. Others had been formally diagnosed with the biopsy;

others went to M.D.s who did the blood test only and prescribed the GF diet.

Only one response was skeptical of using chiropractors and kinesiologists

with nutrition expertise, and a handful of responses said they had found

relief and support from alternative therapies where mainstream medicine had

not been willing to test them for the disease or had misdiagnosed them.

As for hospitals, all said that they say they are celiac no matter how they

were diagnosed, and that they had good experiences getting GF food and were

believed by doctors. IVs are gluten-free.

One particularly insightful reply said that her whole family of four was

diagnosed without the biopsy, and that as she has been comfortable with CD

over time, she feels less of a need for the biopsy.

I was also told that sticking to the diet is extremely important, more

important than getting the biopsy. I was told by another that their doctor

considered improvement on the diet, coupled with the positive antibodies,

his gold standard, in his professional judgment.

Nobody who replied has been denied insurance, and all but one were not

questioned by doctors or required to show some biopsy stamp of approval.

For a disease like this where there are so many symptoms that can seem like

other things, there is not unanimity among health professionals. What I got

out of reading all the replies was not to worry about what other people

think, to follow the diet strictly, and listen to my gut.

[Guest guest]

Interesting, yes, but not what I want to hear!!!

I guess I was fooling myself that because I get no obvious symptoms

when I cheat that I " get away " with small amounts. But maybe I am

getting harmful effects that I just can't feel.

I suppose I dont want to face the possibility that I can't have any

gluten ever.... I'm just being a sook really, aren't I?

thanks, deb

> >So I'm probably being a bit dim here and you've probably said this

> >100+ times already, but have I been deluding myself all along? Do

I

> >need to get tested for all the Ig's to see what's really going on?

> >

> >Thanks yet again HJ, deb

>

>

> ya know, there is an email that just came on the celiac list that

i think

> might be interesting to you. i'll paste the most important part

first, but

> the rest below:

>

> I was also told that sticking to the diet is extremely important,

more

> important than getting the biopsy. I was told by another that

their doctor

> considered improvement on the diet, coupled with the positive

antibodies,

> his gold standard, in his professional judgment.

>

> so, ya know. you can have the test or not, but if you go gluten

free and

> you get better, that's pretty much that.

>

> here's the whole email:

>

> Thank you everyone for sharing with me your experiences with

mainstream and

> alternative medicine, and how it relates to your diagnosis and

decision to

> go on the GF diet.

>

> Out of the couple dozen responses I received, only one person said

that

> they had experienced disbelief on the part of an M.D. as to their

CD status.

>

> An overwhelming majority of those who responded felt that a gluten

> challenge was unnecessary for their purposes, because they

improved so much

> on the GF diet, and nobody in health care questioned them when

they said

> they were celiac.

>

> " Listen to your gut " was the message, no pun intended. Several

people wrote

> that they had been diagnosed by alternative practitioners or even

figured

> it out for themselves. Others had been formally diagnosed with the

biopsy;

> others went to M.D.s who did the blood test only and prescribed

the GF diet.

>

> Only one response was skeptical of using chiropractors and

kinesiologists

> with nutrition expertise, and a handful of responses said they had

found

> relief and support from alternative therapies where mainstream

medicine had

> not been willing to test them for the disease or had misdiagnosed

them.

>

> As for hospitals, all said that they say they are celiac no matter

how they

> were diagnosed, and that they had good experiences getting GF food

and were

> believed by doctors. IVs are gluten-free.

>

> One particularly insightful reply said that her whole family of

four was

> diagnosed without the biopsy, and that as she has been comfortable

with CD

> over time, she feels less of a need for the biopsy.

>

> I was also told that sticking to the diet is extremely important,

more

> important than getting the biopsy. I was told by another that

their doctor

> considered improvement on the diet, coupled with the positive

antibodies,

> his gold standard, in his professional judgment.

>

> Nobody who replied has been denied insurance, and all but one were

not

> questioned by doctors or required to show some biopsy stamp of

approval.

>

> For a disease like this where there are so many symptoms that can

seem like

> other things, there is not unanimity among health professionals.

What I got

> out of reading all the replies was not to worry about what other

people

> think, to follow the diet strictly, and listen to my gut.

[Guest guest]

Yeah, I know, I absolutely know that grains don't do me any good.

And that's all grains, not just gluten. And I really don't know why

I'm whining about it all of a sudden. Despite being 99% grain free

for several years, it seems there is part of me that still hans't

quite come to terms with the fact that it needs to be 100%. Thanks

for bearing with me :-)

> well deb, up until last night, i would have said something like

this: hey, it's not so bad. grains, at *best*, do you no good. and

c'mon. who said you were born with the right to toast, anyway!