Re: Re:Celiac-induced Fantasy

[Guest guest]

We could also have support groups to take it in turns to deliver meals. But still need a very knowledgeable advocate at the celiac's side in hosp.----- Original Message -----From: < > < >Sent: Sun Mar 30 09:00:56 2008Subject: [ ] Re:Celiac-induced FantasyFunny - just last week I came up with that idea too. There are personal chefs and personal shoppers already - maybe they could be trained. Though it doesn't always work - just look at the astounding number of nutritionists giving out wrong information on eating with celiac.What would you pay for that kind of personalized service? Especially since it wouldn't be covered by insurance. I am curious so let's all chime in with our opinions. I know when I got so sick I also had no money since I couldn't work and was in bed for over a year. I would have really appreciated that kind of service but wouldn't have been able to afford it. Many others aren't so sick or have spouses that are working so they could afford that kind of help.Anyone involved with hospitals or nursing homes out there? Would they be able to buy shelf stable meals that could be available to their patients given the cost of gluten free products? And then would you trust the staff to keep them gluten free unless they came to you sealed from the factory? Just more fantasizing...Curious, Maia------------------------------------

[Guest guest]

I think that's a great idea. We could help each other with what we need -- or have a trusted family member or friend help us. Have a kind of support system that we contact. Have it figured out before anything dire happens just in case...Maybe Pam's newsletter could help us out with this initially?Maybe too have those medic alert bracelets or whatever with celiac written on it - saying it creates an autoimmune response in the presence of any gluten (wheat, rye, oats, barley) plus other allergens--and the contact number for one's food advocate or group on it... Does anyone here know how to get the bracelets (or pendant)?However I think too hospitals in general need to be more informed and eventually have backup options for diet, just as they do for diabetics or those who have a severe peanut allergy. It wouldn't do for them to make us more ill. They are just so very unaware and the medical system as it is

right now is so often in denial that probably initially it wouldn't be practical. However in time I think this will change--especially if we make our needs known.If enough of us write to hospital newsletters consistently enough and ask them to consider our situation maybe it can change. I think more letters to our local newspapers also should be part of generally informing the public. It may take more action than this to effect a change, however this could be a good beginning, something we could all do from time to time--even if its just a very short paragraph. Its the general repetition that often helps change people's awareness.I wonder what the history of this is in Europe -- what was done, how it progressed to their current awareness. Maybe there is a lesson there for us. Does anyone here know of it? Or how to find out?My brother 's special senior center (at Hope) does not serve

gluten free food--so we make his lunch. He has Down's and of course would love to just be normal and eat gluten. However the staff at Hope is willing to work with us on this since they see how much better he is doing not being on gluten. They don't like D any better than any of us. I doubt one could easily convince a geriatric hospital to change their dietary practices for a few patients, however I suppose it could be done. Maybe for the same reason? the dreaded D may come to our assistance!I think the main thing is to convince society in general that celiac is a serious condition that needs to be honored rather than ignored. It seems like more and more changes are afoot recently so maybe it is on track anyway...just from so many people discovering they have celiac or gluten intolerance, whether officially diagnosed or not.BeaBronwyn Syiek <bronwyn@...> wrote: We could also have support groups to take it in turns to deliver meals. But still need a very knowledgeable advocate at the celiac's side in hosp. ----- Original Message ----- From: < > < > Sent: Sun Mar 30 09:00:56 2008 Subject: [ ] Re:Celiac-induced Fantasy Funny - just last week I came up with that idea too. There are personal

chefs and personal shoppers already - maybe they could be trained. Though it doesn't always work - just look at the astounding number of nutritionists giving out wrong information on eating with celiac. What would you pay for that kind of personalized service? Especially since it wouldn't be covered by insurance. I am curious so let's all chime in with our opinions. I know when I got so sick I also had no money since I couldn't work and was in bed for over a year. I would have really appreciated that kind of service but wouldn't have been able to afford it. Many others aren't so sick or have spouses that are working so they could afford that kind of help. Anyone involved with hospitals or nursing homes out there? Would they be able to buy shelf stable meals that could be available to their

patients given the cost of gluten free products? And then would you trust the staff to keep them gluten free unless they came to you sealed from the factory? Just more fantasizing... Curious, Maia ------------------------------------

[Guest guest]

The hospital food issue is very frustrating. Just last

year the chef at Dominican Hospital (in Santa Cruz) attended one of our

meetings and even came to do a talk. He told us all about their procedures

to accommodate celiacs, and they sounded very together. Yet even so I

still get reports of people having problems with the food service there.

I’m not sure where the disconnect is. Maybe the head staff puts

these procedures in place but the staff doesn’t understand them (again,

the turnover issue?) or forgets or is just on autopilot. I recently came

across a lady in the local health food store shopping for GF food for a friend

in the hospital. It seems odd to me that the senior staff understands and

actively initiates procedures and policy for handling special diets but the

reality is so different. It’s really frustrating how this issue

never seems to get any better.

Pam

From:

[mailto: ] On

Behalf Of Beatrice Garth

Sent: Sunday, March 30, 2008 2:40 PM

Subject: Re: [ ] Re:Celiac-induced Fantasy

I think that's a great idea. We could help each other with what we need --

or have a trusted family member or friend help us. Have a kind of support

system that we contact. Have it figured out before anything dire happens just

in case...Maybe Pam's newsletter could help us out with this initially?

Maybe too have those medic alert bracelets or whatever with celiac written on

it - saying it creates an autoimmune response in the presence of any

gluten (wheat, rye, oats, barley) plus other allergens--and the contact number

for one's food advocate or group on it... Does anyone here know how to get the

bracelets (or pendant)?

However I think too hospitals in general need to be more informed and

eventually have backup options for diet, just as they do for diabetics or

those who have a severe peanut allergy. It wouldn't do for them to make us more

ill. They are just so very unaware and the medical system as it is right now is

so often in denial that probably initially it wouldn't be practical. However in

time I think this will change--especially if we make our needs known.

If enough of us write to hospital newsletters consistently enough and ask

them to consider our situation maybe it can change. I think more letters

to our local newspapers also should be part of generally informing the public.

It may take more action than this to effect a change, however this could be a

good beginning, something we could all do from time to time--even if its just a

very short paragraph. Its the general repetition that often helps change people's

awareness.

I wonder what the history of this is in Europe -- what was done, how it

progressed to their current awareness. Maybe there is a lesson there for us.

Does anyone here know of it? Or how to find out?

My brother 's special senior center (at Hope) does not serve

gluten free food--so we make his lunch. He has Down's and of course would love

to just be normal and eat gluten. However the staff at Hope is willing to work

with us on this since they see how much better he is doing not being on gluten.

They don't like D any better than any of us. I doubt one could easily convince

a geriatric hospital to change their dietary practices for a few patients,

however I suppose it could be done. Maybe for the same reason? the dreaded D

may come to our assistance!

I think the main thing is to convince society in general that celiac is a

serious condition that needs to be honored rather than ignored. It seems like

more and more changes are afoot recently so maybe it is on track anyway...just

from so many people discovering they have celiac or gluten intolerance, whether

officially diagnosed or not.

Bea

Bronwyn Syiek <bronwyn@...> wrote:

We

could also have support groups to take it in turns to deliver meals. But still

need a very knowledgeable advocate at the celiac's side in hosp.

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

From: < >

< >

Sent: Sun Mar 30 09:00:56 2008

Subject: [ ] Re:Celiac-induced Fantasy

Funny - just last week I came up with that idea too. There are

personal chefs and personal shoppers already - maybe they could be

trained. Though it doesn't always work - just look at the

astounding

number of nutritionists giving out wrong information on eating with

celiac.

What would you pay for that kind of personalized service?

Especially

since it wouldn't be covered by insurance. I am curious so let's

all

chime in with our opinions. I know when I got so sick I also had no

money since I couldn't work and was in bed for over a year. I would

have really appreciated that kind of service but wouldn't have been

able to afford it. Many others aren't so sick or have spouses that

are working so they could afford that kind of help.

Anyone involved with hospitals or nursing homes out there? Would

they

be able to buy shelf stable meals that could be available to their

patients given the cost of gluten free products? And then would you

trust the staff to keep them gluten free unless they came to you

sealed from the factory? Just more fantasizing...

Curious, Maia

------------------------------------

[Guest guest]

When I had surgery two months ago at Menlo Park Surgical Hospital,

they were really great about the food, except for one thing – the clear

broth had gluten in it. If I hadn’t been paranoid and made my

husband double check, then I would have eaten it and been sick with a celiac

reaction along with my abdominal surgery, which would NOT have been fun.

It’s a good thing I am so paranoid & my husband is so thorough…

As for writing to hospitals I think it is

a great idea – and so is the medic alert thingie. I’d love to

know how to get/word that.

Lil

From: [mailto: ] On Behalf Of Pam Newbury

Sent: Monday, March 31, 2008 11:42

PM

Subject: RE: [ ]

Re:Celiac-induced Fantasy

The hospital food issue is very frustrating. Just last

year the chef at Dominican Hospital (in Santa

Cruz) attended one of our meetings and even came to do

a talk. He told us all about their procedures to accommodate celiacs, and

they sounded very together. Yet even so I still get reports of people

having problems with the food service there. I’m not sure where the

disconnect is. Maybe the head staff puts these procedures in place but

the staff doesn’t understand them (again, the turnover issue?) or forgets

or is just on autopilot. I recently came across a lady in the local

health food store shopping for GF food for a friend in the hospital. It

seems odd to me that the senior staff understands and actively initiates

procedures and policy for handling special diets but the reality is so

different. It’s really frustrating how this issue never seems to

get any better.

Pam

From:

[mailto: ]

On Behalf Of Beatrice Garth

Sent: Sunday, March 30, 2008 2:40

PM

Subject: Re: [ ]

Re:Celiac-induced Fantasy

I think

that's a great idea. We could help each other with what we need -- or have a

trusted family member or friend help us. Have a kind of support system that we

contact. Have it figured out before anything dire happens just in case...Maybe

Pam's newsletter could help us out with this initially?

Maybe too have those medic alert bracelets or whatever with celiac written on

it - saying it creates an autoimmune response in the presence of any

gluten (wheat, rye, oats, barley) plus other allergens--and the contact number

for one's food advocate or group on it... Does anyone here know how to get the

bracelets (or pendant)?

However I think too hospitals in general need to be more informed and

eventually have backup options for diet, just as they do for diabetics or

those who have a severe peanut allergy. It wouldn't do for them to make us more

ill. They are just so very unaware and the medical system as it is right now is

so often in denial that probably initially it wouldn't be practical. However in

time I think this will change--especially if we make our needs known.

If enough of us write to hospital newsletters consistently enough and ask

them to consider our situation maybe it can change. I think more letters

to our local newspapers also should be part of generally informing the public.

It may take more action than this to effect a change, however this could be a

good beginning, something we could all do from time to time--even if its just a

very short paragraph. Its the general repetition that often helps change

people's awareness.

I wonder what the history of this is in Europe

-- what was done, how it progressed to their current awareness. Maybe there is

a lesson there for us. Does anyone here know of it? Or how to find out?

My brother 's special senior center (at Hope) does not serve

gluten free food--so we make his lunch. He has Down's and of course would love

to just be normal and eat gluten. However the staff at Hope is willing to work

with us on this since they see how much better he is doing not being on gluten.

They don't like D any better than any of us. I doubt one could easily convince

a geriatric hospital to change their dietary practices for a few patients,

however I suppose it could be done. Maybe for the same reason? the dreaded D

may come to our assistance!

I think the main thing is to convince society in general that celiac is a

serious condition that needs to be honored rather than ignored. It seems like

more and more changes are afoot recently so maybe it is on track anyway...just

from so many people discovering they have celiac or gluten intolerance, whether

officially diagnosed or not.

Bea

Bronwyn Syiek <bronwynquinstreet>

wrote:

We could also have

support groups to take it in turns to deliver meals. But still need a very

knowledgeable advocate at the celiac's side in hosp.

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

From:

< >

< >

Sent: Sun Mar 30 09:00:56 2008

Subject: [ ] Re:Celiac-induced Fantasy

Funny - just last week I came up with that idea too. There are

personal chefs and personal shoppers already - maybe they could be

trained. Though it doesn't always work - just look at the

astounding

number of nutritionists giving out wrong information on eating with

celiac.

What would you pay for that kind of personalized service? Especially

since it wouldn't be covered by insurance. I am curious so let's

all

chime in with our opinions. I know when I got so sick I also had no

money since I couldn't work and was in bed for over a year. I would

have really appreciated that kind of service but wouldn't have been

able to afford it. Many others aren't so sick or have spouses that

are working so they could afford that kind of help.

Anyone involved with hospitals or nursing homes out there? Would

they

be able to buy shelf stable meals that could be available to their

patients given the cost of gluten free products? And then would you

trust the staff to keep them gluten free unless they came to you

sealed from the factory? Just more fantasizing...

Curious, Maia

------------------------------------

[Guest guest]

http://www.americanmedical-id.com/

This site worked well for us for an id. Wording is up to you though. They are fairly small, so can't get too detailed. We included "celiac" and "no gluten", and included a phone number (use someone's number who can advocate for you, like your husband's cell).

Best,

From: [mailto: ] On Behalf Of Lillyth Denaghy Keogh-QuillanSent: Tuesday, April 01, 2008 9:53 AM Subject: RE: [ ] Re:Celiac-induced Fantasy

When I had surgery two months ago at Menlo Park Surgical Hospital, they were really great about the food, except for one thing – the clear broth had gluten in it. If I hadn’t been paranoid and made my husband double check, then I would have eaten it and been sick with a celiac reaction along with my abdominal surgery, which would NOT have been fun. It’s a good thing I am so paranoid & my husband is so thorough…

As for writing to hospitals I think it is a great idea – and so is the medic alert thingie. I’d love to know how to get/word that.

Lil

From: [mailto: ] On Behalf Of Pam NewburySent: Monday, March 31, 2008 11:42 PM Subject: RE: [ ] Re:Celiac-induced Fantasy

The hospital food issue is very frustrating. Just last year the chef at Dominican Hospital (in Santa Cruz) attended one of our meetings and even came to do a talk. He told us all about their procedures to accommodate celiacs, and they sounded very together. Yet even so I still get reports of people having problems with the food service there. I’m not sure where the disconnect is. Maybe the head staff puts these procedures in place but the staff doesn’t understand them (again, the turnover issue?) or forgets or is just on autopilot. I recently came across a lady in the local health food store shopping for GF food for a friend in the hospital. It seems odd to me that the senior staff understands and actively initiates procedures and policy for handling special diets but the reality is so different. It’s really frustrating how this issue never seems to get any better.

Pam

From: [mailto: ] On Behalf Of Beatrice GarthSent: Sunday, March 30, 2008 2:40 PM Subject: Re: [ ] Re:Celiac-induced Fantasy

I think that's a great idea. We could help each other with what we need -- or have a trusted family member or friend help us. Have a kind of support system that we contact. Have it figured out before anything dire happens just in case...Maybe Pam's newsletter could help us out with this initially?Maybe too have those medic alert bracelets or whatever with celiac written on it - saying it creates an autoimmune response in the presence of any gluten (wheat, rye, oats, barley) plus other allergens--and the contact number for one's food advocate or group on it... Does anyone here know how to get the bracelets (or pendant)?However I think too hospitals in general need to be more informed and eventually have backup options for diet, just as they do for diabetics or those who have a severe peanut allergy. It wouldn't do for them to make us more ill. They are just so very unaware and the medical system as it is right now is so often in denial that probably initially it wouldn't be practical. However in time I think this will change--especially if we make our needs known.If enough of us write to hospital newsletters consistently enough and ask them to consider our situation maybe it can change. I think more letters to our local newspapers also should be part of generally informing the public. It may take more action than this to effect a change, however this could be a good beginning, something we could all do from time to time--even if its just a very short paragraph. Its the general repetition that often helps change people's awareness.I wonder what the history of this is in Europe -- what was done, how it progressed to their current awareness. Maybe there is a lesson there for us. Does anyone here know of it? Or how to find out?My brother 's special senior center (at Hope) does not serve gluten free food--so we make his lunch. He has Down's and of course would love to just be normal and eat gluten. However the staff at Hope is willing to work with us on this since they see how much better he is doing not being on gluten. They don't like D any better than any of us. I doubt one could easily convince a geriatric hospital to change their dietary practices for a few patients, however I suppose it could be done. Maybe for the same reason? the dreaded D may come to our assistance!I think the main thing is to convince society in general that celiac is a serious condition that needs to be honored rather than ignored. It seems like more and more changes are afoot recently so maybe it is on track anyway...just from so many people discovering they have celiac or gluten intolerance, whether officially diagnosed or not.BeaBronwyn Syiek <bronwynquinstreet> wrote:

We could also have support groups to take it in turns to deliver meals. But still need a very knowledgeable advocate at the celiac's side in hosp.----- Original Message -----From: < > < >Sent: Sun Mar 30 09:00:56 2008Subject: [ ] Re:Celiac-induced FantasyFunny - just last week I came up with that idea too. There are personal chefs and personal shoppers already - maybe they could be trained. Though it doesn't always work - just look at the astounding number of nutritionists giving out wrong information on eating with celiac.What would you pay for that kind of personalized service? Especially since it wouldn't be covered by insurance. I am curious so let's all chime in with our opinions. I know when I got so sick I also had no money since I couldn't work and was in bed for over a year. I would have really appreciated that kind of service but wouldn't have been able to afford it. Many others aren't so sick or have spouses that are working so they could afford that kind of help.Anyone involved with hospitals or nursing homes out there? Would they be able to buy shelf stable meals that could be available to their patients given the cost of gluten free products? And then would you trust the staff to keep them gluten free unless they came to you sealed from the factory? Just more fantasizing...Curious, Maia------------------------------------

[Guest guest]

Hi--

I just wanted to put in a good word for the Truckee hospital. When I had to

spend a week there with my daughter several years ago, I was amazed to find out

that it has a whole freezer full of gf food, including all kinds of baked goods

that I had never tried before. Every day the nutritionist came to see if my

meals were okay. It was a great experience.

On the other hand, when I gave birth to my daughter at California Pacific

hospital here in San Francisco, I had laughably bad gluten-full food service, no

matter how many times I told the staff that I had celiac disease. Every single

meal they served me something I couldn't eat, no matter how many times I

explained the issue. The day I left they brought me a chocolate chip cookie as

a little, glutinous, goodbye treat. God forbid my daughter, or someone

else's celiac child, should be checked in to the hospital without someone to

oversee her diet.

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

From: on behalf of D Darcy

Sent: Tue 4/1/2008 1:16 PM

Subject: RE: [ ] Re:Celiac-induced Fantasy

http://www.americanmedical-id.com/

This site worked well for us for an id. Wording is up to you though. They

are fairly small, so can't get too detailed. We included " celiac " and " no

gluten " , and included a phone number (use someone's number who can advocate

for you, like your husband's cell).

Best,

_____

From: [mailto: ]

On Behalf Of Lillyth Denaghy Keogh-Quillan

Sent: Tuesday, April 01, 2008 9:53 AM

Subject: RE: [ ] Re:Celiac-induced Fantasy

When I had surgery two months ago at Menlo Park Surgical Hospital, they were

really great about the food, except for one thing - the clear broth had

gluten in it. If I hadn't been paranoid and made my husband double check,

then I would have eaten it and been sick with a celiac reaction along with

my abdominal surgery, which would NOT have been fun. It's a good thing I am

so paranoid & my husband is so thorough.

As for writing to hospitals I think it is a great idea - and so is the medic

alert thingie. I'd love to know how to get/word that.

Lil

_____

From: [mailto: ]

On Behalf Of Pam Newbury

Sent: Monday, March 31, 2008 11:42 PM

Subject: RE: [ ] Re:Celiac-induced Fantasy

The hospital food issue is very frustrating. Just last year the chef at

Dominican Hospital (in Santa Cruz) attended one of our meetings and even

came to do a talk. He told us all about their procedures to accommodate

celiacs, and they sounded very together. Yet even so I still get reports of

people having problems with the food service there. I'm not sure where the

disconnect is. Maybe the head staff puts these procedures in place but the

staff doesn't understand them (again, the turnover issue?) or forgets or is

just on autopilot. I recently came across a lady in the local health food

store shopping for GF food for a friend in the hospital. It seems odd to me

that the senior staff understands and actively initiates procedures and

policy for handling special diets but the reality is so different. It's

really frustrating how this issue never seems to get any better.

Pam

From: [mailto: ]

On Behalf Of Beatrice Garth

Sent: Sunday, March 30, 2008 2:40 PM

Subject: Re: [ ] Re:Celiac-induced Fantasy

I think that's a great idea. We could help each other with what we need --

or have a trusted family member or friend help us. Have a kind of support

system that we contact. Have it figured out before anything dire happens

just in case...Maybe Pam's newsletter could help us out with this initially?

Maybe too have those medic alert bracelets or whatever with celiac written

on it - saying it creates an autoimmune response in the presence of any

gluten (wheat, rye, oats, barley) plus other allergens--and the contact

number for one's food advocate or group on it... Does anyone here know how

to get the bracelets (or pendant)?

However I think too hospitals in general need to be more informed and

eventually have backup options for diet, just as they do for diabetics or

those who have a severe peanut allergy. It wouldn't do for them to make us

more ill. They are just so very unaware and the medical system as it is

right now is so often in denial that probably initially it wouldn't be

practical. However in time I think this will change--especially if we make

our needs known.

If enough of us write to hospital newsletters consistently enough and ask

them to consider our situation maybe it can change. I think more letters to

our local newspapers also should be part of generally informing the public.

It may take more action than this to effect a change, however this could be

a good beginning, something we could all do from time to time--even if its

just a very short paragraph. Its the general repetition that often helps

change people's awareness.

I wonder what the history of this is in Europe -- what was done, how it

progressed to their current awareness. Maybe there is a lesson there for us.

Does anyone here know of it? Or how to find out?

My brother 's special senior center (at Hope) does not serve gluten

free food--so we make his lunch. He has Down's and of course would love to

just be normal and eat gluten. However the staff at Hope is willing to work

with us on this since they see how much better he is doing not being on

gluten. They don't like D any better than any of us. I doubt one could

easily convince a geriatric hospital to change their dietary practices for a

few patients, however I suppose it could be done. Maybe for the same reason?

the dreaded D may come to our assistance!

I think the main thing is to convince society in general that celiac is a

serious condition that needs to be honored rather than ignored. It seems

like more and more changes are afoot recently so maybe it is on track

anyway...just from so many people discovering they have celiac or gluten

intolerance, whether officially diagnosed or not.

Bea

Bronwyn Syiek <bronwyn@...> wrote:

We could also have support groups to take it in turns to deliver meals. But

still need a very knowledgeable advocate at the celiac's side in hosp.

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

From: < >

< >

Sent: Sun Mar 30 09:00:56 2008

Subject: [ ] Re:Celiac-induced Fantasy

Funny - just last week I came up with that idea too. There are

personal chefs and personal shoppers already - maybe they could be

trained. Though it doesn't always work - just look at the astounding

number of nutritionists giving out wrong information on eating with

celiac.

What would you pay for that kind of personalized service? Especially

since it wouldn't be covered by insurance. I am curious so let's all

chime in with our opinions. I know when I got so sick I also had no

money since I couldn't work and was in bed for over a year. I would

have really appreciated that kind of service but wouldn't have been

able to afford it. Many others aren't so sick or have spouses that

are working so they could afford that kind of help.

Anyone involved with hospitals or nursing homes out there? Would they

be able to buy shelf stable meals that could be available to their

patients given the cost of gluten free products? And then would you

trust the staff to keep them gluten free unless they came to you

sealed from the factory? Just more fantasizing...

Curious, Maia

------------------------------------

[Guest guest]

Hey all, Another cool site for medical ID braceletsis www. shope.com. Some things area bit pricey, but my friend got one that's reallypretty. Not the flattened piece you normally see. On Apr 1, 2008, at 1:16 PM, "D Darcy" <ddarcy@...> wrote:

http://www.americanmedical-id.com/

This site worked well for us for an id. Wording is up to you though. They are fairly small, so can't get too detailed. We included "celiac" and "no gluten", and included a phone number (use someone's number who can advocate for you, like your husband's cell).

Best,

From: [mailto: ] On Behalf Of Lillyth Denaghy Keogh-QuillanSent: Tuesday, April 01, 2008 9:53 AM Subject: RE: [ ] Re:Celiac-induced Fantasy

When I had surgery two months ago at Menlo Park Surgical Hospital, they were really great about the food, except for one thing – the clear broth had gluten in it. If I hadn’t been paranoid and made my husband double check, then I would have eaten it and been sick with a celiac reaction along with my abdominal surgery, which would NOT have been fun. It’s a good thing I am so paranoid & my husband is so thorough…

As for writing to hospitals I think it is a great idea – and so is the medic alert thingie. I’d love to know how to get/word that.

Lil

From: [mailto: ] On Behalf Of Pam NewburySent: Monday, March 31, 2008 11:42 PM Subject: RE: [ ] Re:Celiac-induced Fantasy

The hospital food issue is very frustrating. Just last year the chef at Dominican Hospital (in Santa Cruz) attended one of our meetings and even came to do a talk. He told us all about their procedures to accommodate celiacs, and they sounded very together. Yet even so I still get reports of people having problems with the food service there. I’m not sure where the disconnect is. Maybe the head staff puts these procedures in place but the staff doesn’t understand them (again, the turnover issue?) or forgets or is just on autopilot. I recently came across a lady in the local health food store shopping for GF food for a friend in the hospital. It seems odd to me that the senior staff understands and actively initiates procedures and policy for handling special diets but the reality is so different. It’s really frustrating how this issue never seems to get any better.

Pam

From: [mailto: ] On Behalf Of Beatrice GarthSent: Sunday, March 30, 2008 2:40 PM Subject: Re: [ ] Re:Celiac-induced Fantasy

I think that's a great idea. We could help each other with what we need -- or have a trusted family member or friend help us. Have a kind of support system that we contact. Have it figured out before anything dire happens just in case...Maybe Pam's newsletter could help us out with this initially?Maybe too have those medic alert bracelets or whatever with celiac written on it - saying it creates an autoimmune response in the presence of any gluten (wheat, rye, oats, barley) plus other allergens--and the contact number for one's food advocate or group on it... Does anyone here know how to get the bracelets (or pendant)?However I think too hospitals in general need to be more informed and eventually have backup options for diet, just as they do for diabetics or those who have a severe peanut allergy. It wouldn't do for them to make us more ill. They are just so very unaware and the medical system as it is right now is so often in denial that probably initially it wouldn't be practical. However in time I think this will change--especially if we make our needs known.If enough of us write to hospital newsletters consistently enough and ask them to consider our situation maybe it can change. I think more letters to our local newspapers also should be part of generally informing the public. It may take more action than this to effect a change, however this could be a good beginning, something we could all do from time to time--even if its just a very short paragraph. Its the general repetition that often helps change people's awareness.I wonder what the history of this is in Europe -- what was done, how it progressed to their current awareness. Maybe there is a lesson there for us. Does anyone here know of it? Or how to find out?My brother 's special senior center (at Hope) does not serve gluten free food--so we make his lunch. He has Down's and of course would love to just be normal and eat gluten. However the staff at Hope is willing to work with us on this since they see how much better he is doing not being on gluten. They don't like D any better than any of us. I doubt one could easily convince a geriatric hospital to change their dietary practices for a few patients, however I suppose it could be done. Maybe for the same reason? the dreaded D may come to our assistance!I think the main thing is to convince society in general that celiac is a serious condition that needs to be honored rather than ignored. It seems like more and more changes are afoot recently so maybe it is on track anyway...just from so many people discovering they have celiac or gluten intolerance, whether officially diagnosed or not.BeaBronwyn Syiek <bronwynquinstreet> wrote:

We could also have support groups to take it in turns to deliver meals. But still need a very knowledgeable advocate at the celiac's side in hosp.----- Original Message -----From: < > < >Sent: Sun Mar 30 09:00:56 2008Subject: [ ] Re:Celiac-induced FantasyFunny - just last week I came up with that idea too. There are personal chefs and personal shoppers already - maybe they could be trained. Though it doesn't always work - just look at the astounding number of nutritionists giving out wrong information on eating with celiac.What would you pay for that kind of personalized service? Especially since it wouldn't be covered by insurance. I am curious so let's all chime in with our opinions. I know when I got so sick I also had no money since I couldn't work and was in bed for over a year. I would have really appreciated that kind of service but wouldn't have been able to afford it. Many others aren't so sick or have spouses that are working so they could afford that kind of help.Anyone involved with hospitals or nursing homes out there? Would they be able to buy shelf stable meals that could be available to their patients given the cost of gluten free products? And then would you trust the staff to keep them gluten free unless they came to you sealed from the factory? Just more fantasizing...Curious, Maia------------------------------------