Re: Celiac-induced Fantasy

[Guest guest]

I basically agree with you -- we don't really need the regular docs that much which is probably why there aren't so many specialists here well versed in celiac disease--they are not generally going to get rich focusing on it. However there might come a time one has to go into a hospital for perhaps unrelated reasons--maybe a car accident or something or some organ or other shuts down and one needs surgery. For this reason I think I should at least have some health professional who is aware of my need for non gluten items and how important that is for my well being. This could be difficult otherwise at a hospital where almost all their food is gluten this and that. Actually I wonder if anyone here has had to deal with this question. What happens to us when at the mercy of perhaps an uninformed hospital? Or are they OK about it?Bearoobop2 <cwpowers@...> wrote: Hi, I couldn't help but dip my oar into the conversation about doctors, diagnosis, bedside manners, and where to go for a celiac-friendly GI doctor. Having seen 4 GI docs (including at Stanford) and 2 dietitians, I think there is a limit to what traditional healthcare can do when it comes to celiac sprue. For example, I would be in better shape if I had an advance crew to go to grocery stores, restaurants, and potluck dinners to check ingredients and cross-contamination for me. Maybe it would be a someone like a dietician-trained personal shopper who would inventory my taste

in foods and come up with food lists/sources or safe restaurants to frequent. And when I had a reaction, this person would be able to sleuth the culprit, being intimate with my diet. S/he would suggest foods to eliminate, syndromes to research, or specialists to go to who could help with my unique symptoms. Fantasy aside, the doctors and dietitians need the support groups and lists such as this one, to help with the details of implementing a truly gluten free diet. Or to help figure out multiple issues. I know so much more about how to take care of myself from the range of advice, opinions and resources reported and espoused here. Keep it coming! Maybe some day, we won't need to be so careful because food will be "safer," diagnoses will be more finely tuned, and healthcare will cover my dietian/personal shopper. :-) Carol

[Guest guest]

I had to go to ucsf last year - emergency admittance. My gastroenterologist is very well versed but you are under the care of a general medical doctor on the ward. To say it was appalling and scarey is an understatement:- they repeatedly sent food for feeding thru the nose that was wheat based (and I didn't need nose tube anyway, I was on fluids only)- no matter how many times I told them to bring my antibiotics, they always brought generic from the pharmacy- the pharmacist had no idea how to discern if something was gluten free - he said he read the ingredients on a colon prep! I asked for one I knew to be gluten free and the drs weren't available and the nurses were unable to give me the large quantities of water needed with that prep- I had to call manufacturers myself for every drug- the nutritionist told me not to eat anything from the kitchen as there is wheat everywhere.It was terrifying. Moral was for us is that you need a terrific advocate by your side every minute. (There were other mistakes too but these are the gluten related mistakes).B----- Original Message -----From: < > < >Sent: Sat Mar 29 17:34:35 2008Subject: Re: [ ] Celiac-induced FantasyI basically agree with you -- we don't really need the regular docs that much which is probably why there aren't so many specialists here well versed in celiac disease--they are not generally going to get rich focusing on it.However there might come a time one has to go into a hospital for perhaps unrelated reasons--maybe a car accident or something or some organ or other shuts down and one needs surgery.For this reason I think I should at least have some health professional who is aware of my need for non gluten items and how important that is for my well being. This could be difficult otherwise at a hospital where almost all their food is gluten this and that.Actually I wonder if anyone here has had to deal with this question. What happens to us when at the mercy of perhaps an uninformed hospital? Or are they OK about it?Bearoobop2 <cwpowers@...> wrote: Hi, I couldn't help but dip my oar into the conversation about doctors, diagnosis, bedside manners, and where to go for a celiac-friendly GI doctor. Having seen 4 GI docs (including at Stanford) and 2 dietitians, I think there is a limit to what traditional healthcare can do when it comes to celiac sprue. For example, I would be in better shape if I had an advance crew to go to grocery stores, restaurants, and potluck dinners to check ingredients and cross-contamination for me. Maybe it would be a someone like a dietician-trained personal shopper who would inventory my taste in foods and come up with food lists/sources or safe restaurants to frequent. And when I had a reaction, this person would be able to sleuth the culprit, being intimate with my diet. S/he would suggest foods to eliminate, syndromes to research, or specialists to go to who could help with my unique symptoms. Fantasy aside, the doctors and dietitians need the support groups and lists such as this one, to help with the details of implementing a truly gluten free diet. Or to help figure out multiple issues. I know so much more about how to take care of myself from the range of advice, opinions and resources reported and espoused here. Keep it coming! Maybe some day, we won't need to be so careful because food will be " safer, " diagnoses will be more finely tuned, and healthcare will cover my dietian/personal shopper. :-) Carol

[Guest guest]

Wow--I knew it! I am glad you survived the experience. Imagine what it would have been like if you hadn't been conscious!I worked long ago as a nurse's aide and I saw what everyone ate and how it was prepared.This has got to change somehow. Maybe there should be a group effort focused on alerting hospital emergency wards or something?BeaBronwyn Syiek <bronwyn@...> wrote: I had to go to ucsf last year - emergency admittance. My gastroenterologist

is very well versed but you are under the care of a general medical doctor on the ward. To say it was appalling and scarey is an understatement: - they repeatedly sent food for feeding thru the nose that was wheat based (and I didn't need nose tube anyway, I was on fluids only) - no matter how many times I told them to bring my antibiotics, they always brought generic from the pharmacy - the pharmacist had no idea how to discern if something was gluten free - he said he read the ingredients on a colon prep! I asked for one I knew to be gluten free and the drs weren't available and the nurses were unable to give me the large quantities of water needed with that prep - I had to call manufacturers myself for every drug - the nutritionist told me not to eat anything from the kitchen as there is wheat everywhere. It was terrifying. Moral was for us is that you need a terrific advocate by your side every minute. (There were other mistakes too but

these are the gluten related mistakes). B ----- Original Message ----- From: < > < > Sent: Sat Mar 29 17:34:35 2008 Subject: Re: [ ] Celiac-induced Fantasy I basically agree with you -- we don't really need the regular docs that much which is probably why there aren't so many specialists here well versed in celiac disease--they are not generally going to get rich focusing on it. However there might come a time one has to go into a hospital for perhaps unrelated reasons--maybe a car accident or something or some organ or other shuts down and one needs surgery. For this reason I think I should at least have some health professional who is aware of my need for non gluten items and how important that is for my well being. This could be

difficult otherwise at a hospital where almost all their food is gluten this and that. Actually I wonder if anyone here has had to deal with this question. What happens to us when at the mercy of perhaps an uninformed hospital? Or are they OK about it? Bea roobop2 <cwpowersmac> wrote: Hi, I couldn't help but dip my oar into the conversation about doctors, diagnosis, bedside manners, and where to go for a celiac-friendly GI doctor. Having seen 4 GI docs (including at Stanford) and 2 dietitians, I think there is a limit to what traditional healthcare can do when it comes to celiac sprue.

For example, I would be in better shape if I had an advance crew to go to grocery stores, restaurants, and potluck dinners to check ingredients and cross-contamination for me. Maybe it would be a someone like a dietician-trained personal shopper who would inventory my taste in foods and come up with food lists/sources or safe restaurants to frequent. And when I had a reaction, this person would be able to sleuth the culprit, being intimate with my diet. S/he would suggest foods to eliminate, syndromes to research, or specialists

to go to who could help with my unique symptoms. Fantasy aside, the doctors and dietitians need the support groups and lists such as this one, to help with the details of implementing a truly gluten free diet. Or to help figure out multiple issues. I know so much more about how to take care of myself from the range of advice, opinions and resources reported and espoused here. Keep it coming! Maybe some day, we won't need to be so careful because food will be "safer," diagnoses will be more finely tuned, and healthcare will cover my dietian/personal shopper.

:-) Carol

[Guest guest]

Yes, somehow we need to get that done. It was terrifying for my family. At one point I had to take a pain killer that made me dopey - thank god my husband stayed by my side as I would have been unable to converse with them.And much of this stuff went on with a " drink this " at 4 in the morning.You would think the UCSF, one of the best hospitals probably in the world would be on top of this.----- Original Message -----From: < > < >Sent: Sat Mar 29 18:06:19 2008Subject: Re: [ ] Celiac-induced FantasyWow--I knew it! I am glad you survived the experience. Imagine what it would have been like if you hadn't been conscious!I worked long ago as a nurse's aide and I saw what everyone ate and how it was prepared.This has got to change somehow. Maybe there should be a group effort focused on alerting hospital emergency wards or something?BeaBronwyn Syiek <bronwyn@...> wrote: I had to go to ucsf last year - emergency admittance. My gastroenterologist is very well versed but you are under the care of a general medical doctor on the ward. To say it was appalling and scarey is an understatement: - they repeatedly sent food for feeding thru the nose that was wheat based (and I didn't need nose tube anyway, I was on fluids only) - no matter how many times I told them to bring my antibiotics, they always brought generic from the pharmacy - the pharmacist had no idea how to discern if something was gluten free - he said he read the ingredients on a colon prep! I asked for one I knew to be gluten free and the drs weren't available and the nurses were unable to give me the large quantities of water needed with that prep - I had to call manufacturers myself for every drug - the nutritionist told me not to eat anything from the kitchen as there is wheat everywhere. It was terrifying. Moral was for us is that you need a terrific advocate by your side every minute. (There were other mistakes too but these are the gluten related mistakes). B ----- Original Message ----- From: < > < > Sent: Sat Mar 29 17:34:35 2008 Subject: Re: [ ] Celiac-induced Fantasy I basically agree with you -- we don't really need the regular docs that much which is probably why there aren't so many specialists here well versed in celiac disease--they are not generally going to get rich focusing on it. However there might come a time one has to go into a hospital for perhaps unrelated reasons--maybe a car accident or something or some organ or other shuts down and one needs surgery. For this reason I think I should at least have some health professional who is aware of my need for non gluten items and how important that is for my well being. This could be difficult otherwise at a hospital where almost all their food is gluten this and that. Actually I wonder if anyone here has had to deal with this question. What happens to us when at the mercy of perhaps an uninformed hospital? Or are they OK about it? Bea roobop2 <cwpowers@...> wrote: Hi, I couldn't help but dip my oar into the conversation about doctors, diagnosis, bedside manners, and where to go for a celiac-friendly GI doctor. Having seen 4 GI docs (including at Stanford) and 2 dietitians, I think there is a limit to what traditional healthcare can do when it comes to celiac sprue. For example, I would be in better shape if I had an advance crew to go to grocery stores, restaurants, and potluck dinners to check ingredients and cross-contamination for me. Maybe it would be a someone like a dietician-trained personal shopper who would inventory my taste in foods and come up with food lists/sources or safe restaurants to frequent. And when I had a reaction, this person would be able to sleuth the culprit, being intimate with my diet. S/he would suggest foods to eliminate, syndromes to research, or specialists to go to who could help with my unique symptoms. Fantasy aside, the doctors and dietitians need the support groups and lists such as this one, to help with the details of implementing a truly gluten free diet. Or to help figure out multiple issues. I know so much more about how to take care of myself from the range of advice, opinions and resources reported and espoused here. Keep it coming! Maybe some day, we won't need to be so careful because food will be " safer, " diagnoses will be more finely tuned, and healthcare will cover my dietian/personal shopper. :-) Carol

[Guest guest]

Bea,

I'd like to talk more about a celiac awareness at hospitals. Count me in. I work

for a health

system and would love to see how to make it a GF safe zone. Sounds like a

full-time job.

:-)

What's to happen when there is a formal definition of gluten free, due out this

year? Will it

apply to medications? Does anyone know? Maybe once there is a definition then

regulations could come that will require medications to be labeled.

Does anyone wear a bracelet with celiac info on it? I don't even have anything

in my wallet

about being celiac. Time to change that.

Carol

>

> Wow--I knew it! I am glad you survived the experience. Imagine what it would

have

been like if you hadn't been conscious!

> I worked long ago as a nurse's aide and I saw what everyone ate and how it was

prepared.

> This has got to change somehow. Maybe there should be a group effort focused

on

alerting hospital emergency wards or something?

>

> Bea

[Guest guest]

I was thinking about that too Carol. If we are wearing a medicalbracelet they'd maybe be more likelyto take it seriously?? Including meds if we're in a situation where we haveno advocate. On Mar 30, 2008, at 10:31 AM, "roobop2" <cwpowers@...> wrote:

Bea,

I'd like to talk more about a celiac awareness at hospitals. Count me in. I work for a health

system and would love to see how to make it a GF safe zone. Sounds like a full-time job.

:-)

What's to happen when there is a formal definition of gluten free, due out this year? Will it

apply to medications? Does anyone know? Maybe once there is a definition then

regulations could come that will require medications to be labeled.

Does anyone wear a bracelet with celiac info on it? I don't even have anything in my wallet

about being celiac. Time to change that.

Carol

>

> Wow--I knew it! I am glad you survived the experience. Imagine what it would have

been like if you hadn't been conscious!

> I worked long ago as a nurse's aide and I saw what everyone ate and how it was

prepared.

> This has got to change somehow. Maybe there should be a group effort focused on

alerting hospital emergency wards or something?

>

> Bea