Re: CD in hospitals, pharmacies?

[Guest guest]

My GI told me that he'd never heard of gluten involved in IVs in any way. However, I've heard people report having extreme symptoms as soon as they began an IV. That isn't cause-effect proof, but it does lead me to wonder.

I did some on-line searching about this a couple of years ago; I didn't find anything on the subject.

I'm very interesting in what you may learn.

This week, I asked two Walgreens pharmacists if my customer profile could show celiac disease as opposed to just "gastrointestinal problems". One pharmacist seemed not to have heard of CD; the other, his senior, said that it wasn't possible to put it on the customer profile. I'm not sure she knew about CD, either. I can understand that Walgreens and similar would prefer NOT to know about one's having CD, as they now have little control over the gluten content of generic drugs, nor can they always even get that information. (When I was a Kaiser member, they did seem to have it on my profile. I don't think it had any effect, though.)

H.

In a message dated 6/9/08 10:06:22 PM, bronwyn@... writes:

Hey Connie:  do the er's dust the iv tube in gluten. I had a heinous experience in ucsf but didn't know about that?  Are there any other things about hospital that you know we should worry about?

The dietician told me to not even consider eating from the kitchen at UCSF no matter what they say due to cross-contamination

The pharmacist at night did not have a clue and I was repeatedly given stuff (or rather thet tried to) without anybody checking for gluten. Including, they kept trying to substitute my gf antibiotics with their unchecked generic versions.

Ugh.

Bronwyn

**************Vote for your city's best dining and nightlife. City's Best 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

Walgreens has a gf list for non-prescription meds. Some, perhaps most, of their pharmacists don't know about it but it really is there in their computer system. They've printed it out for me a few times - covers stuff like tylenol etc.I have " BRAND ONLY " on my profile and get my dr's (when I remember) to write " dispense as written " . I have found that most " brands " seem to be gf.One of the pharmacists at San Mateo is very diligent in calling manufacturers, but it adds a day or two to getting hold of drugs if the gf manufacturer is not a regular supplier.I now call manufacturers myself as I have had some bad reactions to generics that did not have added gluten but were processed in a plant that also processes gluten. Usually I find that the pharma companies are pretty good and knowledgeable at answering the question, but not all, of course.B----- Original Message -----From: < > < >Sent: Mon Jun 09 22:13:59 2008Subject: Re: [ ] CD in hospitals, pharmacies?My GI told me that he'd never heard of gluten involved in IVs in any way. However, I've heard people report having extreme symptoms as soon as they began an IV. That isn't cause-effect proof, but it does lead me to wonder.I did some on-line searching about this a couple of years ago; I didn't find anything on the subject.I'm very interesting in what you may learn.This week, I asked two Walgreens pharmacists if my customer profile could show celiac disease as opposed to just " gastrointestinal problems " . One pharmacist seemed not to have heard of CD; the other, his senior, said that it wasn't possible to put it on the customer profile. I'm not sure she knew about CD, either. I can understand that Walgreens and similar would prefer NOT to know about one's having CD, as they now have little control over the gluten content of generic drugs, nor can they always even get that information. (When I was a Kaiser member, they did seem to have it on my profile. I don't think it had any effect, though.)H.In a message dated 6/9/08 10:06:22 PM, bronwyn@... writes: Hey Connie: do the er's dust the iv tube in gluten. I had a heinous experience in ucsf but didn't know about that? Are there any other things about hospital that you know we should worry about? The dietician told me to not even consider eating from the kitchen at UCSF no matter what they say due to cross-contamination The pharmacist at night did not have a clue and I was repeatedly given stuff (or rather thet tried to) without anybody checking for gluten. Including, they kept trying to substitute my gf antibiotics with their unchecked generic versions. Ugh. Bronwyn **************Vote for your city's best dining and nightlife. City's Best 2008.(http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

Oh, by the way, while I obviously know that gluten intolerance is an intolerance, not an allergy, I always list it everywhere I am asked about an allergy - it's in my drs notes, on my walgreens profile etc. If the pharmacist is savvy they see it and react to it.The walgreen's profile let's you list allergies and, in my experience, they do pay attention to it.Sadly, though, most pharmacists I have spoken with still think that they can discern whether a drug has gluten in it by reading the ingredients list.It's up to all of us to help every pharmacist understand that this is not the case. In my experience, they are smart and helpful group of professionals and as soon as they understand the issue, they are better equipped to deal with the next celiac they come across.B----- Original Message -----From: < > < >Sent: Tue Jun 10 00:49:53 2008Subject: Re: [ ] CD in hospitals, pharmacies?Walgreens has a gf list for non-prescription meds. Some, perhaps most, of their pharmacists don't know about it but it really is there in their computer system. They've printed it out for me a few times - covers stuff like tylenol etc.I have " BRAND ONLY " on my profile and get my dr's (when I remember) to write " dispense as written " . I have found that most " brands " seem to be gf.One of the pharmacists at San Mateo is very diligent in calling manufacturers, but it adds a day or two to getting hold of drugs if the gf manufacturer is not a regular supplier.I now call manufacturers myself as I have had some bad reactions to generics that did not have added gluten but were processed in a plant that also processes gluten. Usually I find that the pharma companies are pretty good and knowledgeable at answering the question, but not all, of course.B----- Original Message -----From: < > < >Sent: Mon Jun 09 22:13:59 2008Subject: Re: [ ] CD in hospitals, pharmacies?My GI told me that he'd never heard of gluten involved in IVs in any way. However, I've heard people report having extreme symptoms as soon as they began an IV. That isn't cause-effect proof, but it does lead me to wonder.I did some on-line searching about this a couple of years ago; I didn't find anything on the subject.I'm very interesting in what you may learn.This week, I asked two Walgreens pharmacists if my customer profile could show celiac disease as opposed to just " gastrointestinal problems " . One pharmacist seemed not to have heard of CD; the other, his senior, said that it wasn't possible to put it on the customer profile. I'm not sure she knew about CD, either. I can understand that Walgreens and similar would prefer NOT to know about one's having CD, as they now have little control over the gluten content of generic drugs, nor can they always even get that information. (When I was a Kaiser member, they did seem to have it on my profile. I don't think it had any effect, though.)H.In a message dated 6/9/08 10:06:22 PM, bronwyn@... writes: Hey Connie: do the er's dust the iv tube in gluten. I had a heinous experience in ucsf but didn't know about that? Are there any other things about hospital that you know we should worry about? The dietician told me to not even consider eating from the kitchen at UCSF no matter what they say due to cross-contamination The pharmacist at night did not have a clue and I was repeatedly given stuff (or rather thet tried to) without anybody checking for gluten. Including, they kept trying to substitute my gf antibiotics with their unchecked generic versions. Ugh. Bronwyn **************Vote for your city's best dining and nightlife. City's Best 2008.(http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

I agree. Pharmacists seem to be more open to celiac and our requirements than most doctors, once informed. I had a similar experience of a pharmacist helping me when I was ill with bronchitis. I wanted a cough medicine that was gluten free, explaining I had celiac and that gluten made me severely ill and had almost killed me as an infant. The pharmacist here at Rite Aid in Los Gatos immediately came out from behind her counter and helped me search for something I could use. She finally found something that was a bitter herbal expectorant with a glycerin base (no alcohol) actually since none of the sweeter more commercial cough medicines were gluten free. I was impressed. The expectorant made it so I could

tolerate my condition a lot better too even though it had a horrible taste.BeaFrom: Bronwyn Syiek <bronwyn@...>Subject: Re: [ ] CD in hospitals, pharmacies? Date: Tuesday, June 10, 2008, 12:55 AM

Oh, by the way, while I obviously know that gluten intolerance is an intolerance, not an allergy, I always list it everywhere I am asked about an allergy - it's in my drs notes, on my walgreens profile etc. If the pharmacist is savvy they see it and react to it.

The walgreen's profile let's you list allergies and, in my experience, they do pay attention to it.

Sadly, though, most pharmacists I have spoken with still think that they can discern whether a drug has gluten in it by reading the ingredients list.

It's up to all of us to help every pharmacist understand that this is not the case. In my experience, they are smart and helpful group of professionals and as soon as they understand the issue, they are better equipped to deal with the next celiac they come across.

B

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

From: < >

< >

Sent: Tue Jun 10 00:49:53 2008

Subject: Re: [ ] CD in hospitals, pharmacies?

Walgreens has a gf list for non-prescription meds. Some, perhaps most, of their pharmacists don't know about it but it really is there in their computer system. They've printed it out for me a few times - covers stuff like tylenol etc.

I have "BRAND ONLY" on my profile and get my dr's (when I remember) to write "dispense as written". I have found that most "brands" seem to be gf.

One of the pharmacists at San Mateo is very diligent in calling manufacturers, but it adds a day or two to getting hold of drugs if the gf manufacturer is not a regular supplier.

I now call manufacturers myself as I have had some bad reactions to generics that did not have added gluten but were processed in a plant that also processes gluten. Usually I find that the pharma companies are pretty good and knowledgeable at answering the question, but not all, of course.

B

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

From: < >

< >

Sent: Mon Jun 09 22:13:59 2008

Subject: Re: [ ] CD in hospitals, pharmacies?

My GI told me that he'd never heard of gluten involved in IVs in any way. However, I've heard people report having extreme symptoms as soon as they began an IV. That isn't cause-effect proof, but it does lead me to wonder.

I did some on-line searching about this a couple of years ago; I didn't find anything on the subject.

I'm very interesting in what you may learn.

This week, I asked two Walgreens pharmacists if my customer profile could show celiac disease as opposed to just "gastrointestinal problems". One pharmacist seemed not to have heard of CD; the other, his senior, said that it wasn't possible to put it on the customer profile. I'm not sure she knew about CD, either. I can understand that Walgreens and similar would prefer NOT to know about one's having CD, as they now have little control over the gluten content of generic drugs, nor can they always even get that information. (When I was a Kaiser member, they did seem to have it on my profile. I don't think it had any effect, though.)

H.

In a message dated 6/9/08 10:06:22 PM, bronwynquinstreet (DOT) com writes:

Hey Connie: do the er's dust the iv tube in gluten. I had a heinous experience in ucsf but didn't know about that? Are there any other things about hospital that you know we should worry about?

The dietician told me to not even consider eating from the kitchen at UCSF no matter what they say due to cross-contamination

The pharmacist at night did not have a clue and I was repeatedly given stuff (or rather thet tried to) without anybody checking for gluten. Including, they kept trying to substitute my gf antibiotics with their unchecked generic versions.

Ugh.

Bronwyn

************ **

Vote for your city's best dining and nightlife. City's Best 2008.

(http://citysbest. aol.com?ncid= aolacg0005000000 0102)

[Guest guest]

For the pharmacies it is better for them to list it under allergies to

wheat, barley, oats. They really do not seem to take diseases into the

whole picture. But if you list it as an allergy it will flag it. I have

never heard of the IV being a problem It is usually a saline and or

glucose solution and should not have any glutens in it.

Mark

[Guest guest]

Mark,

Not what is IN the IV but the tubing and

the bag itself.

Connie

From: [mailto: ] On Behalf Of Mark Morley

Sent: Tuesday, June 10, 2008 11:11

AM

Subject: [ ] Re: CD in

hospitals, pharmacies?

For the

pharmacies it is better for them to list it under allergies to

wheat, barley, oats. They really do not seem to take diseases into the

whole picture. But if you list it as an allergy it will flag it. I have

never heard of the IV being a problem It is usually a saline and or

glucose solution and should not have any glutens in it.

Mark

[Guest guest]

Connie,

Awh! I see now. Some times there is the talc on them just like in latex

gloves. Which who knows what it can be. In the gloves it is mostly

cornstarch that is in baby powder. But sometimes it can be something

else. I always had a reaction to the powdered gloves when I was working

in a research lab. That was way before I was diagnosed with CD. The

picture is coming in now. I know patients can recommend that talc less

gloves be used. I wonder if the same is true for medical tubing etc.

Mark

[Guest guest]

Could that have been a response to latex? I know a lot of people develop an allergy to latex. I would be surprised if tubing or gloves were powdered with wheat flour. Corn starch absorbs water and doesn't get sticky, but wheat flour gets very sticky and gloppy.

In a message dated 6/11/08 8:43:40 AM, 1grnthmb@... writes:

I always had a reaction to the powdered gloves

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