Re: question re Stanford conference

[Guest guest]

Hi Sharon,

I have in my notes that Dr. Green stated that Fosamax "drops serum calcium levels." (Not sure what that means. However, I have read in a number of places (not sure where, unfortunately), as well as been told by my holistic Doctor (a western and eastern trained M.D.) as well as gastro doctor that Fosamax is contra-indicated in celiacs, especially when first diagnosed. My holistic doctor said she'd rather give low natural hormone doses than Fosamax (and she is NOT a hormone proponent!)

Caryn Gottfried

----- Original Message -----

From: Sharon Wood

Sent: Saturday, September 16, 2006 9:59 PM

Subject: [ ] question re Stanford conference

The conference today was great: extremely informative, fun, & well organized. It was great to see so many other people with celiac & to try so many snacks, a surprising number of which tasted good.My question is this: Did anyone hear one of the presenters, Dr. Green, explain in Q & A why he thought Fosamax was not a good thing to take? Did he say anything further than he does in his book? In the book, he suggests Fosamax or other similar drugs might interfere with the body's regulation of calcium, especially if one's intestines haven't healed yet. Even one of the other presenting doctors, Gail Pyle, was surprised. Anyway, thanks to all the organizers! This was my first time (I was diagnosed about a month after last year's conference). I'm really glad I went.Sharon Wood

[Guest guest]

Hi all, I just move to SF and am new to the group

I just saw this and can't believe it, There is a conference for Celiacs in the bay area?!

I suppose it is an annual thing. Where else can I find info for these types of events?

Thanks!

Lynley

On 9/16/06, Caryn Gottfried <caryn777@...> wrote:

Hi Sharon,

I have in my notes that Dr. Green stated that Fosamax " drops serum calcium levels. " (Not sure what that means. However, I have read in a number of places (not sure where, unfortunately), as well as been told by my holistic Doctor (a western and eastern trained M.D.) as well as gastro doctor that Fosamax is contra-indicated in celiacs, especially when first diagnosed. My holistic doctor said she'd rather give low natural hormone doses than Fosamax (and she is NOT a hormone proponent!)

Caryn Gottfried

----- Original Message -----

From: Sharon Wood

Sent: Saturday, September 16, 2006 9:59 PM

Subject: [ ] question re Stanford conference

The conference today was great: extremely informative, fun, & well organized. It was great to see so many other people with celiac & to try so many snacks, a surprising number of which tasted good.My question is this: Did anyone hear one of the presenters, Dr. Green, explain in Q & A why he thought Fosamax was not a good thing to take? Did he say anything further than he does in his book? In the book, he suggests Fosamax or other similar drugs might interfere with the body's regulation of calcium, especially if one's intestines haven't healed yet. Even one of the other presenting doctors, Gail Pyle, was surprised. Anyway, thanks to all the organizers! This was my first time (I was diagnosed about a month after last year's conference). I'm really glad I went.Sharon Wood

[Guest guest]

So, was there any exciting news or samples of new GF products

available in the area? I didn't go this year because the cost was a

bit much for me (it has increased substantially since my visit two

years ago), and I am mainly interested in new products. What was your

favorite new thing you tried? And how was the food? Did they have

the honey beer this year?

Thanks for sharing!

-

[Guest guest]

You are in luck! I happened to have

a question for Dr. Green, and happened to sit next to two women who had the

same question as you. I had the good fortune to sit through about five

minutes worth of explanation. (The two women asked him that question over

and over and over), so while I normally might not have paid attention to the

answer, I head it five times yesterday, so I can actually answer the question.

He said that Fosamax is a drug intended to

maintain calcium levels, but that

in celiacs, the calcium level needs to be raised through calcium supplements.

Once calcium levels are back up, you can start on the Fosamax. The

Fosamax, while keeping the calcium level in the bones, will also prevent the calcium level from rising with

the supplements. Essentially, the drug is simply a “status-quo”

drug. When you take it, your calcium levels remain static, which, in a

celiac with chrinic malabsorption, basically renders you unable to “catch

up”.

I hope that makes sense the way I

explained it.

On 9/16/06, Caryn

Gottfried <caryn777earthlink (DOT) net>

wrote:

Hi Sharon,

I have in my notes that Dr.

Green stated that Fosamax " drops serum calcium levels. " (Not

sure what that means. However, I have read in a number of places (not

sure where, unfortunately), as well as been told by my holistic Doctor (a

western and eastern trained M.D.) as well as gastro doctor that

Fosamax is contra-indicated in celiacs, especially when first

diagnosed. My holistic doctor said she'd rather give low natural

hormone doses than Fosamax (and she is NOT a hormone proponent!)

Caryn Gottfried

----- Original Message -----

From: Sharon

Wood

Sent: Saturday,

September 16, 2006 9:59 PM

Subject:

[ ] question re Stanford conference

The conference today was

great: extremely informative, fun, & well organized. It was

great to see so many other people with celiac & to try so many snacks, a

surprising number of which tasted good.

My question is this: Did anyone hear one of the presenters, Dr.

Green, explain in Q & A why he thought Fosamax was not a good thing to

take? Did he say anything further than he does in his book? In the

book, he suggests Fosamax or other similar drugs might interfere with the

body's regulation of calcium, especially if one's intestines haven't healed

yet. Even one of the other presenting doctors, Gail Pyle, was

surprised.

Anyway, thanks to all the organizers! This was my first time (I was

diagnosed about a month after last year's conference). I'm really glad I

went.

Sharon Wood

[Guest guest]

If you go to www.celiacsprue.org on Tuesday, they

will have a list of bay area resources, as well as the power point presentations

used in the conference, posted on their website.

And yes, the conference IS an annual thing

– but you’ll want to get your tickets early next year – this year

we had to turn people away.

From: [mailto: ] On Behalf Of lynley mannell

Sent: Sunday, September 17, 2006

2:15 PM

Subject: Re: [ ]

question re Stanford conference

Hi all, I just move to SF and am new to the group

I just saw this and can't believe it, There is a conference for Celiacs

in the bay area?!

I suppose it is an annual thing. Where else can I find info for

these types of events?

Thanks!

Lynley

On 9/16/06, Caryn

Gottfried <caryn777earthlink (DOT) net>

wrote:

Hi Sharon,

I have in my notes that Dr.

Green stated that Fosamax " drops serum calcium levels. " (Not

sure what that means. However, I have read in a number of places (not

sure where, unfortunately), as well as been told by my holistic Doctor (a

western and eastern trained M.D.) as well as gastro doctor that

Fosamax is contra-indicated in celiacs, especially when first

diagnosed. My holistic doctor said she'd rather give low natural

hormone doses than Fosamax (and she is NOT a hormone proponent!)

Caryn Gottfried

----- Original Message -----

From: Sharon

Wood

Sent: Saturday,

September 16, 2006 9:59 PM

Subject:

[ ] question re Stanford conference

The conference today was

great: extremely informative, fun, & well organized. It was

great to see so many other people with celiac & to try so many snacks, a

surprising number of which tasted good.

My question is this: Did anyone hear one of the presenters, Dr.

Green, explain in Q & A why he thought Fosamax was not a good thing to

take? Did he say anything further than he does in his book? In the

book, he suggests Fosamax or other similar drugs might interfere with the

body's regulation of calcium, especially if one's intestines haven't healed

yet. Even one of the other presenting doctors, Gail Pyle, was

surprised.

Anyway, thanks to all the organizers! This was my first time (I was

diagnosed about a month after last year's conference). I'm really glad I

went.

Sharon Wood

[Guest guest]

Thank you both, Lillyth and Caryn! Your explanations were very helpful. After listening to Dr. Green, I decided not to take my Fosamax this morning. Your responses make me feel better about it. Next: a conversation with my Dr.Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh@...> wrote: You are in

luck! I happened to have a question for Dr. Green, and happened to sit next to two women who had the same question as you. I had the good fortune to sit through about five minutes worth of explanation. (The two women asked him that question over and over and over), so while I normally might not have paid attention to the answer, I head it five times yesterday, so I can actually answer the question. He said that Fosamax is a drug intended to maintain calcium levels, but that in celiacs, the calcium level needs to be raised through calcium supplements. Once calcium levels are back up, you

can start on the Fosamax. The Fosamax, while keeping the calcium level in the bones, will also prevent the calcium level from rising with the supplements. Essentially, the drug is simply a “status-quo” drug. When you take it, your calcium levels remain static, which, in a celiac with chrinic malabsorption, basically renders you unable to “catch up”. I hope that makes sense the way I explained it.

On 9/16/06, Caryn Gottfried <caryn777earthlink (DOT) net> wrote: Hi Sharon, I have in my notes that Dr. Green stated that Fosamax "drops serum calcium levels." (Not sure what that means. However, I have read in a number of places (not sure where, unfortunately), as well as been told by my holistic Doctor (a western and eastern trained M.D.) as well as gastro doctor that Fosamax is contra-indicated in celiacs, especially when first diagnosed. My holistic doctor said she'd rather give low natural hormone doses than Fosamax (and she is NOT a hormone proponent!) Caryn Gottfried ----- Original Message ----- From: Sharon Wood Sent: Saturday, September 16, 2006 9:59 PM Subject: [ ] question re Stanford conference The conference today was great: extremely informative, fun, & well organized. It was great to see so many other people with celiac & to try so many snacks, a surprising number of which tasted good. My question is this: Did anyone hear one of the presenters, Dr. Green,

explain in Q & A why he thought Fosamax was not a good thing to take? Did he say anything further than he does in his book? In the book, he suggests Fosamax or other similar drugs might interfere with the body's regulation of calcium, especially if one's intestines haven't healed yet. Even one of the other presenting doctors, Gail Pyle, was surprised. Anyway, thanks to all the organizers! This was my first time (I was diagnosed about a month after last year's conference). I'm really glad I went. Sharon Wood

[Guest guest]

Again, lucky for you, I also heard what

you should say to your Dr.

(Which somehow makes me less annoyed with those

ladies, sitting there hungry & desperately having to pee – we broke

for lunch at 12:15, and the Q & A with Dr. Green was at 12:30, and I didn’t

want to chance missing him, so I stayed & waited. You can imagine in

that state, how annoyed I was. But now at least I feel like my waiting

through all that somehow had a purpose)…

Anyway, Dr. Green said to tell your doctor

that you were at a conference and one of the speakers said (insert second

paragraph below beginning with “He said that Fosamax is a drug intended

to…”, and to mention that you want your calcium levels checked, and

to make sure they are leveled out, or at the max they can be before you take

Fosamax again.

And good for you!!!! I know how hard

it can be to stop taking meds your doc prescribed, because it seems like they

should know better than you do what you need. It took me four days after

my biopsy to stop taking the pills my GI prescribed for me. I couldn’t

figure out why I kept getting all these horrid stomach pains & felt

bloated. Then I checked on celiac.com, and sure enough – the meds

she prescribed are NOT GF!!!!

Just make sure you take all the

responsibility for not taking the meds. Remember that a doctor who gives recommendations

without actually being your doctor can get sued. I’m sure you

wouldn’t do this, but if someone at the conference went to their Doc

& said something like, “Dr. Green said not to take it”,

he might get sued – and we need people like him in the world! ;-)

I think that was why the lady yesterday

kept asking the same question over & over again, it seemed to me like what

she REALLY wanted from him was for him to say “stop taking it”,

which of course, he can’t do, unless he wants to open himself up to a

lawsuit…

Good luck with your calcium absorption.

Also, DO check www.celiacsprue.org on Tuesday, as they

will have all the Power Point slides up on the site. I think I recall

that nutritionist saying something about the body only absorbing 500mg of

calcium at a time, but I’m not 100% sure. That may have been some

other nutrient. It might be on the slides.

Lil

From: [mailto: ] On Behalf Of Sharon Wood

Sent: Sunday, September 17, 2006

8:43 PM

Subject: RE: [ ]

question re Stanford conference

Thank you

both, Lillyth and Caryn! Your explanations were very helpful. After

listening to Dr. Green, I decided not to take my Fosamax this morning.

Your responses make me feel better about it. Next: a conversation

with my Dr.

Lillyth Denaghy

Keogh-Quillan <lillythdenaghykeoghcomcast (DOT) net>

wrote:

You are in luck! I happened to have

a question for Dr. Green, and happened to sit next to two women who had the

same question as you. I had the good fortune to sit through about five

minutes worth of explanation. (The two women asked him that question over

and over and over), so while I normally might not have paid attention to the

answer, I head it five times yesterday, so I can actually answer the question.

He said that Fosamax is a drug intended to

maintain calcium levels, but that

in celiacs, the calcium level needs to be raised through calcium

supplements. Once calcium levels are back up, you can start on the

Fosamax. The Fosamax, while keeping the calcium level in the bones, will

also prevent the calcium level

from rising with the supplements. Essentially, the drug is simply a

“status-quo” drug. When you take it, your calcium levels

remain static, which, in a celiac with chrinic malabsorption, basically renders

you unable to “catch up”.

I hope that makes sense the way I

explained it.

On 9/16/06, Caryn

Gottfried <caryn777earthlink (DOT) net>

wrote:

Hi Sharon,

I have in my notes that Dr. Green stated that

Fosamax " drops serum calcium levels. " (Not sure what that

means. However, I have read in a number of places (not sure where,

unfortunately), as well as been told by my holistic Doctor (a western and

eastern trained M.D.) as well as gastro doctor that Fosamax is

contra-indicated in celiacs, especially when first diagnosed. My holistic

doctor said she'd rather give low natural hormone doses than Fosamax (and

she is NOT a hormone proponent!)

Caryn Gottfried

----- Original Message -----

From: Sharon

Wood

Sent: Saturday,

September 16, 2006 9:59 PM

Subject: [ ]

question re Stanford conference

The conference today was great: extremely informative, fun, &

well organized. It was great to see so many other people with celiac

& to try so many snacks, a surprising number of which tasted good.

My question is this: Did anyone hear one of the presenters, Dr.

Green, explain in Q & A why he thought Fosamax was not a good thing to

take? Did he say anything further than he does in his book? In the

book, he suggests Fosamax or other similar drugs might interfere with the

body's regulation of calcium, especially if one's intestines haven't healed

yet. Even one of the other presenting doctors, Gail Pyle, was

surprised.

Anyway, thanks to all the organizers! This was my first time (I was

diagnosed about a month after last year's conference). I'm really glad I

went.

Sharon Wood

[Guest guest]

Where can I get the PowerPoint

presentations? They went by way too fast for me to take all the notes I

wanted.

Connie

Hampton

From: [mailto: ] On Behalf Of Lillyth Denaghy Keogh-Quillan

Sent: Sunday, September 17, 2006

6:07 PM

Subject: RE: [ ]

question re Stanford conference

If you go to www.celiacsprue.org

on Tuesday, they will have a list of bay area resources, as well as the power

point presentations used in the conference, posted on their website.

And yes, the conference IS an annual thing – but you’ll

want to get your tickets early next year – this year we had to turn

people away.

From:

[mailto: ]

On Behalf Of lynley mannell

Sent: Sunday, September 17, 2006

2:15 PM

Subject: Re: [ ]

question re Stanford conference

Hi all, I just

move to SF and am new to the group

I just saw this

and can't believe it, There is a conference for Celiacs in the bay area?!

I suppose it is an

annual thing. Where else can I find info for these types of events?

Thanks!

Lynley

On 9/16/06, Caryn Gottfried

<caryn777earthlink (DOT) net>

wrote:

Hi Sharon,

I have in my notes that Dr. Green stated that

Fosamax " drops serum calcium levels. " (Not sure what that

means. However, I have read in a number of places (not sure where,

unfortunately), as well as been told by my holistic Doctor (a western and

eastern trained M.D.) as well as gastro doctor that Fosamax is

contra-indicated in celiacs, especially when first diagnosed. My holistic

doctor said she'd rather give low natural hormone doses than Fosamax (and

she is NOT a hormone proponent!)

Caryn Gottfried

----- Original Message -----

From: Sharon

Wood

Sent: Saturday, September

16, 2006 9:59 PM

Subject: [ ]

question re Stanford conference

The conference today was great: extremely

informative, fun, & well organized. It was great to see so many other

people with celiac & to try so many snacks, a surprising number of which

tasted good.

My question is this: Did anyone hear one of the presenters, Dr.

Green, explain in Q & A why he thought Fosamax was not a good thing to

take? Did he say anything further than he does in his book? In the

book, he suggests Fosamax or other similar drugs might interfere with the

body's regulation of calcium, especially if one's intestines haven't healed

yet. Even one of the other presenting doctors, Gail Pyle, was

surprised.

Anyway, thanks to all the organizers! This was my first time (I was

diagnosed about a month after last year's conference). I'm really glad I

went.

Sharon Wood

[Guest guest]

The power points should be up at the csrf web site sometime early this week. Let's give a chance to catch her breath!On Sep 18, 2006, at 1:41 PM, Connie Hampton wrote:Where can I get the PowerPoint presentations?  They went by way too fast for me to take all the notes I wanted. Connie Hampton From: [mailto: ]On Behalf Of Lillyth Denaghy Keogh-QuillanSent: Sunday, September 17, 2006 6:07 PM Subject: RE: [ ] question re Stanford conference If you go to www.celiacsprue.org on Tuesday, they will have a list of bay area resources, as well as the power point presentations used in the conference, posted on their website. And yes, the conference IS an annual thing – but you’ll want to get your tickets early next year – this year we had to turn people away. From: [mailto: ]On Behalf Of lynley mannellSent: Sunday, September 17, 2006 2:15 PM Subject: Re: [ ] question re Stanford conference Hi all, I just move to SF and am new to the group :)I just saw this and can't believe it, There is a conference for Celiacs in the bay area?!I suppose it is an annual thing. Where else can I find info for these types of events?Thanks! Lynley On 9/16/06, Caryn Gottfried <caryn777earthlink (DOT) net> wrote:Hi Sharon,  I have in my notes that Dr. Green stated that Fosamax "drops serum calcium levels." (Not sure what that means.  However, I have read in a number of places (not sure where, unfortunately), as well as been told by my holistic Doctor (a western and eastern trained M.D.) as well as  gastro doctor that Fosamax is contra-indicated in celiacs, especially when first diagnosed.  My holistic doctor said she'd rather give low  natural hormone doses than Fosamax (and she is NOT a hormone proponent!) Caryn Gottfried----- Original Message -----From: Sharon Wood Sent: Saturday, September 16, 2006 9:59 PMSubject: [ ] question re Stanford conference The conference today was great:  extremely informative, fun, & well organized.  It was great to see so many other people with celiac & to try so many snacks, a surprising number of which tasted good.My question is this:  Did anyone hear one of the presenters, Dr. Green, explain in Q & A why he thought Fosamax was not a good thing to take?  Did he say anything further than he does in his book?  In the book, he suggests Fosamax or other similar drugs might interfere with the body's regulation of calcium, especially if one's intestines haven't healed yet.  Even one of the other presenting doctors, Gail Pyle, was surprised.  Anyway, thanks to all the organizers!  This was my first time (I was diagnosed about a month after last year's conference).   I'm really glad I went.Sharon Wood 

[Guest guest]

They said it would be up by tomorrow.

From: [mailto: ] On Behalf Of Debbie Duncan

Sent: Monday, September 18, 2006

2:12 PM

Subject: Re: [ ]

question re Stanford conference

The power

points should be up at the csrf web site sometime early this week. Let's give

a chance to catch her breath!

On Sep 18, 2006, at 1:41 PM, Connie Hampton wrote:

Where can I get the

PowerPoint presentations? They went by way too fast for me to take all

the notes I wanted.

Connie Hampton

From:

[mailto: ]On Behalf Of Lillyth Denaghy Keogh-Quillan

Sent:

Sunday, September 17, 2006 6:07 PM

Subject:

RE: [ ] question re Stanford conference

If you go to www.celiacsprue.org on Tuesday, they will have a list of bay area

resources, as well as the power point presentations used in the conference,

posted on their website.

And yes, the conference

IS an annual thing – but you’ll want to get your tickets early next year – this

year we had to turn people away.

From:

[mailto: ]On Behalf Of lynley mannell

Sent:

Sunday, September 17, 2006 2:15 PM

Subject:

Re: [ ] question re Stanford conference

Hi all, I just move to SF and am new to

the group

I just saw this and can't believe it,

There is a conference for Celiacs in the bay area?!

I suppose it is an annual thing. Where

else can I find info for these types of events?

Thanks!

Lynley

On 9/16/06, Caryn Gottfried <caryn777earthlink (DOT) net> wrote:

Hi

Sharon,

I

have in my notes that Dr. Green stated that Fosamax " drops serum

calcium levels. " (Not sure what that means. However, I have read in

a number of places (not sure where, unfortunately), as well as been told by my holistic Doctor (a western and

eastern trained M.D.) as well as gastro doctor that Fosamax is

contra-indicated in celiacs, especially when first diagnosed. My holistic

doctor said she'd rather give low natural hormone doses than Fosamax (and

she is NOT a hormone proponent!)

Caryn

Gottfried

-----

Original Message -----

From: Sharon

Wood

Sent: Saturday, September 16, 2006 9:59 PM

Subject: [ ]

question re Stanford conference

The

conference today was great: extremely informative, fun, & well

organized. It was great to see so many other people with celiac & to

try so many snacks, a surprising number of which tasted good.

My question is this: Did anyone hear one of

the presenters, Dr. Green, explain in Q & A why he thought Fosamax

was not a good thing to take? Did he say anything further than he does in

his book? In the book, he suggests Fosamax or other similar drugs might

interfere with the body's regulation of calcium, especially if one's intestines

haven't healed yet. Even one of the other presenting doctors, Gail Pyle,

was surprised.

Anyway, thanks to all the organizers! This

was my first time (I was diagnosed about a month after last year's conference).

I'm really glad I went.

Sharon Wood