RE: View of the McD's issue from a celiac expert

[Guest guest]

This is exactly what I would expect to say; I have often disagreed with her opinions on what is acceptable for celiacs. In her response, mentions no specific investigation of the actual process (she refers to pan fry instead of par-fry) or the company, so I have to wonder how she determined that this flavoring is "a perfectly safe ingredient." I, however, will look forward to what Sue hears from Simplot about just how they "remove" the protein. My biggest concern about "removed" protein is that no process is perfect, and mistakes can cause accidental contamination of some batches. As far as I am concerned, I feel that full disclosure is a good idea so that each individual can decide what is acceptable for their personal diet.

I have not yet decided what our family will do about this (my celiac husband and kids love McD's fries; In-and-Out fries are a distant second and in any case don't exist at all anywhere near Santa Cruz). I have occasionally thought they have reacted to the fries, but in the past always assumed that the reaction was caused by contamination at the restaurant.

One issue that is important to consider in this is that celiacs who strictly adhere to the GF diet have been shown to have lower-than-normal absorption; I have wondered if this is due to just such assumptions that products are safe when they really are not.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of M. MulrooneySent: Thursday, February 09, 2006 12:54 AM Subject: [ ] View of the McD's issue from a celiac expert

Forward from SillyYaks

----- Original Message ----- From: marcianar

SillyYaks

Sent: Wednesday, February 08, 2006 10:52 PM

Subject: [sillyYaks] view of the McD's issue from a celiac expert

The following post appeared on the celiac listserv this evening. Forthose of you not familiar with Kupper, she a registereddietician who does a great deal of work with the food industry topromote awareness of CD and develop GF menus in restaurant chains. Sheis also head of GIG - Gluten Intolerance Group and an excellentspeaker on the GF diet.The post:"From: "Thorn, " <mthorn@...>Subject: McD info from an expert in the fieldWhenever controversies or issues like the one about McD's comes up Itry to consult the experts for solid information.I emailed Kupper who is a registered dietitian, executivedirector of the Gluten Intolerance Group and has worked with Outback (along with other companies) to develop gf menus.quote---------Original Message-----This is a case of Mcs following the letter of the law, butwithout the FDA having the exceptions in place - it is causingconfusion. This is a perfectly safe ingredient. People should not beblasting McD for doing what they are told they have to do, but insteadforcing the issue of the pan fry to file an exemption for theirproduct. (notice that thus far the FDA has not made a ruling on anyexemptions filed...that doesn't help)Or of course the pan fry company could certify their product. Thiswould mean they are regularly testing the product to show it's purity.The law is good, but the cart was put before the horse. Kupper, RD, CDExecutive DirectorGluten Intolerance Group of NA"Her words confirm what I suspected: this issue is about the newlabeling law, not the safety (from a celiac point of view) of the fries.Maureen

[Guest guest]

Pam, in your pre-CD days, did you ever eat the french fries at the Davenport bakery? For us, every trip to Santa Cruz required a stop for those french fries. They fry onion rings there, too, so I've written off that possibility. Lovely memories.

Harper

[Guest guest]

Pam, I'm sorry, but I don't understand. Can you rephrase so I can follow properly?

H.

In a message dated 2/12/06 8:13:45 AM, pknewbury@... writes:

One issue that is important to consider in this is that celiacs who strictly adhere to the GF diet have been shown to have lower-than-normal absorption; I have wondered if this is due to just such assumptions that products are safe when they really are not.

[Guest guest]

A couple of years ago the Celiac Sprue Research Foundation at Stanford University was doing preliminary tests to determine the best way to find out if celiacs had been affected by gluten. An incidental finding was that most of the celiacs whose absorption was tested while they were on a strict GF diet had slightly below-normal absorption. In other words, their intestines were not absorbing nutrients as well as an average person. This is expected in celiacs who are consuming gluten, but the assumption before had been that absorption would return to normal after a period of years on the GF diet; for unknown reasons, these celiacs, while greatly improved, had not returned completely to normal. Interestingly, they also found that the first sign of gluten-exposure was lowered absorption rates.

Keep in mind that this was a small sample and that they weren't studying this particular phenomenon; this was just an interesting result that Dr. Gray mentioned in his speech at the conference a couple of years ago. I would truly like to see more research done on this subject; I think it raises interesting issues for celiacs.

Let me know if you have further questions.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of flatcat9@...Sent: Sunday, February 12, 2006 11:57 AM Subject: Re: [ ] View of the McD's issue from a celiac expertPam, I'm sorry, but I don't understand. Can you rephrase so I can follow properly?H.In a message dated 2/12/06 8:13:45 AM, pknewbury@... writes:

One issue that is important to consider in this is that celiacs who strictly adhere to the GF diet have been shown to have lower-than-normal absorption; I have wondered if this is due to just such assumptions that products are safe when they really are not.

[Guest guest]

Pam and others,

Dr. Gray and Dr. Pyle do plan to continue to study why celiacs in

remission are not absorbing nutrients well. I've attached a word

document that describes the mission and progress to date, and plans for

2006. The Foundation's website is being revised now and this

document will be posted there, hopefully by late March. I'm sure

you've heard this from me too often, but the Foundation's work is funded

solely by donations with 100% of the funds going towards direct research

expenses. If you'd like to make a tax deductible donation, please

send a check to:

Celiac Sprue Research

Foundation

P.O. Box 61193

Palo Alto, CA 94306-1193

At 03:09 PM 2/16/2006, Newbury wrote:

A couple of years ago the

Celiac Sprue Research Foundation at Stanford University was doing

preliminary tests to determine the best way to find out if celiacs had

been affected by gluten. An incidental finding was that most of the

celiacs whose absorption was tested while they were on a strict GF diet

had slightly below-normal absorption. In other words, their

intestines were not absorbing nutrients as well as an average

person. This is expected in celiacs who are consuming gluten, but

the assumption before had been that absorption would return to normal

after a period of years on the GF diet; for unknown reasons, these

celiacs, while greatly improved, had not returned completely to

normal. Interestingly, they also found that the first sign of

gluten-exposure was lowered absorption rates.

Keep in mind that this was a

small sample and that they weren't studying this particular phenomenon;

this was just an interesting result that Dr. Gray mentioned in his speech

at the conference a couple of years ago. I would truly like to see

more research done on this subject; I think it raises interesting issues

for celiacs.

Let me know if you have further

questions.

Pam Newbury

Santa Cruz Celiac Support Group

831-423-6904

pknewbury@...

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

From:

[

mailto: ]On Behalf Of

flatcat9@...

Sent: Sunday, February 12, 2006 11:57 AM

Subject: Re: [ ] View of the McD's issue from a celiac

expert

Pam, I'm sorry, but I don't

understand. Can you rephrase so I can follow properly?

H.

In a message dated 2/12/06 8:13:45 AM, pknewbury@...

writes:

One issue that is important to

consider in this is that celiacs who strictly adhere to the GF diet have

been shown to have lower-than-normal absorption; I have wondered if this

is due to just such assumptions that products are safe when they really

are not.

[Guest guest]

How are absorption rates tested, and is that something we should ask for regularly? Thanks! Sharon Wood Newbury <pknewbury@...> wrote: A couple of years ago the Celiac Sprue Research Foundation at Stanford University was doing preliminary tests to determine the best way to find out if celiacs had been affected by gluten. An incidental finding was that most of the celiacs whose absorption was tested while they were on a strict GF diet had slightly below-normal absorption. In other words, their intestines were not absorbing nutrients as well as an average person. This is expected in celiacs who are

consuming gluten, but the assumption before had been that absorption would return to normal after a period of years on the GF diet; for unknown reasons, these celiacs, while greatly improved, had not returned completely to normal. Interestingly, they also found that the first sign of gluten-exposure was lowered absorption rates. Keep in mind that this was a small sample and that they weren't studying this particular phenomenon; this was just an interesting result that Dr. Gray mentioned in his speech at the conference a couple of years ago. I would truly like to see more research done on this subject; I think it raises interesting issues for celiacs. Let me know if you have further questions. Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@... -----Original Message-----From: [mailto: ]On

Behalf Of flatcat9@...Sent: Sunday, February 12, 2006 11:57 AM Subject: Re: [ ] View of the McD's issue from a celiac expertPam, I'm sorry, but I don't understand. Can you rephrase so I can follow properly?H.In a message dated 2/12/06 8:13:45 AM, pknewbury@... writes: One issue that is important to consider in this is that celiacs who strictly adhere to the GF diet have been shown to have lower-than-normal absorption; I have wondered if this is due to just such assumptions that products are safe when they really are not.

[Guest guest]

Sharon,

Just got back from Stanford in December and met with Dr. Gray and Dr.

Plye there to have another biopsy. Dr. Pyle issued a fecal fat tests, a

test that measures the amount of fat in your stool over a 72 hour period.

You have to consume 80-100 grams of fat per day and go to the bathroom in a

bucket for 3 days. This was my 3rd test (like this) so it is not that hard

to do and well worth it. The fat grams in the sttol are quantified and then

if you are less than 7.5 (some say 5.0 grams) then you are considered to be

NORMALLY absorbing. Remember, if you are loosing lots of fat then you are

loosing fat soluable vitamins and minerals. Let me know if that helps.

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

A. Barella

Ph.D. Student in Exercise & Sport Psychology

Graduate Research and Teaching Assistant

Department of Exercise and Sport Science

The University of North Carolina at Greensboro

Room 250 HHP Building

Greensboro, NC 27402

Email: lisabarella@...

Phone/Cell (with VM): (336) 253-5539

Fax: (336) 545-4486

" There are two primary choices in life: to accept conditions as they exist,

or accept the responsbility for changing them " - Denis Waitley

>From: Sharon Wood <swoodsf@...>

>Reply-

>

>Subject: RE: [ ] View of the McD's issue from a celiac expert

>Date: Thu, 16 Feb 2006 16:52:06 -0800 (PST)

>

>How are absorption rates tested, and is that something we should ask for

>regularly?

>

> Thanks!

>

> Sharon Wood

>

>Newbury <pknewbury@...> wrote:

> A couple of years ago the Celiac Sprue Research Foundation at

>Stanford University was doing preliminary tests to determine the best way

>to find out if celiacs had been affected by gluten. An incidental finding

>was that most of the celiacs whose absorption was tested while they were on

>a strict GF diet had slightly below-normal absorption. In other words,

>their intestines were not absorbing nutrients as well as an average person.

> This is expected in celiacs who are consuming gluten, but the assumption

>before had been that absorption would return to normal after a period of

>years on the GF diet; for unknown reasons, these celiacs, while greatly

>improved, had not returned completely to normal. Interestingly, they also

>found that the first sign of gluten-exposure was lowered absorption rates.

>

> Keep in mind that this was a small sample and that they weren't studying

>this particular phenomenon; this was just an interesting result that Dr.

>Gray mentioned in his speech at the conference a couple of years ago. I

>would truly like to see more research done on this subject; I think it

>raises interesting issues for celiacs.

>

> Let me know if you have further questions.

>

> Pam Newbury

>Santa Cruz Celiac Support Group

>831-423-6904

>pknewbury@...

>

>

>

> -----Original Message-----

>From:

>[mailto: ]On Behalf Of flatcat9@...

>Sent: Sunday, February 12, 2006 11:57 AM

>

>Subject: Re: [ ] View of the McD's issue from a celiac expert

>

>

>Pam, I'm sorry, but I don't understand. Can you rephrase so I can follow

>properly?

>H.

>In a message dated 2/12/06 8:13:45 AM, pknewbury@... writes:

>

>

> One issue that is important to consider in this is that celiacs who

>strictly adhere to the GF diet have been shown to have lower-than-normal

>absorption; I have wondered if this is due to just such assumptions that

>products are safe when they really are not.

>

>

>

>

>

[Guest guest]

That's very interesting. I'd never heard of that kind

of test but have only been diagnosed for a year and am

still on the learning curve. I guess my question is

whether this test is a kind of standard test celiacs

should have to get a base line (I'm with Kaiser so it

might be difficult) or if it's scheduled in response

to specific concerns.

Thanks again.

Sharon

--- Barella <lisabarella@...> wrote:

> Sharon,

> Just got back from Stanford in December and met with

> Dr. Gray and Dr.

> Plye there to have another biopsy. Dr. Pyle issued

> a fecal fat tests, a

> test that measures the amount of fat in your stool

> over a 72 hour period.

> You have to consume 80-100 grams of fat per day and

> go to the bathroom in a

> bucket for 3 days. This was my 3rd test (like this)

> so it is not that hard

> to do and well worth it. The fat grams in the sttol

> are quantified and then

> if you are less than 7.5 (some say 5.0 grams) then

> you are considered to be

> NORMALLY absorbing. Remember, if you are loosing

> lots of fat then you are

> loosing fat soluable vitamins and minerals. Let me

> know if that helps.

>

>

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

> A. Barella

> Ph.D. Student in Exercise & Sport Psychology

> Graduate Research and Teaching Assistant

> Department of Exercise and Sport Science

> The University of North Carolina at Greensboro

> Room 250 HHP Building

> Greensboro, NC 27402

> Email: lisabarella@...

> Phone/Cell (with VM): (336) 253-5539

> Fax: (336) 545-4486

>

> " There are two primary choices in life: to accept

> conditions as they exist,

> or accept the responsbility for changing them " -

> Denis Waitley

>

>

>

>

>

> >From: Sharon Wood <swoodsf@...>

> >Reply-

> >

> >Subject: RE: [ ] View of the McD's

> issue from a celiac expert

> >Date: Thu, 16 Feb 2006 16:52:06 -0800 (PST)

> >

> >How are absorption rates tested, and is that

> something we should ask for

> >regularly?

> >

> > Thanks!

> >

> > Sharon Wood

> >

> >Newbury <pknewbury@...> wrote:

> > A couple of years ago the Celiac Sprue

> Research Foundation at

> >Stanford University was doing preliminary tests to

> determine the best way

> >to find out if celiacs had been affected by gluten.

> An incidental finding

> >was that most of the celiacs whose absorption was

> tested while they were on

> >a strict GF diet had slightly below-normal

> absorption. In other words,

> >their intestines were not absorbing nutrients as

> well as an average person.

> > This is expected in celiacs who are consuming

> gluten, but the assumption

> >before had been that absorption would return to

> normal after a period of

> >years on the GF diet; for unknown reasons, these

> celiacs, while greatly

> >improved, had not returned completely to normal.

> Interestingly, they also

> >found that the first sign of gluten-exposure was

> lowered absorption rates.

> >

> > Keep in mind that this was a small sample and

> that they weren't studying

> >this particular phenomenon; this was just an

> interesting result that Dr.

> >Gray mentioned in his speech at the conference a

> couple of years ago. I

> >would truly like to see more research done on this

> subject; I think it

> >raises interesting issues for celiacs.

> >

> > Let me know if you have further questions.

> >

> > Pam Newbury

> >Santa Cruz Celiac Support Group

> >831-423-6904

> >pknewbury@...

> >

> >

> >

> > -----Original Message-----

> >From:

> >[mailto: ]On Behalf Of

> flatcat9@...

> >Sent: Sunday, February 12, 2006 11:57 AM

> >

> >Subject: Re: [ ] View of the McD's

> issue from a celiac expert

> >

> >

> >Pam, I'm sorry, but I don't understand. Can you

> rephrase so I can follow

> >properly?

> >H.

> >In a message dated 2/12/06 8:13:45 AM,

> pknewbury@... writes:

> >

> >

> > One issue that is important to consider in this

> is that celiacs who

> >strictly adhere to the GF diet have been shown to

> have lower-than-normal

> >absorption; I have wondered if this is due to just

> such assumptions that

> >products are safe when they really are not.

> >

> >

> >

> >

> >