That's very exciting! I missed the article the Times article. Thanks for
sending it to us. I would guess, if the clinical trials are successful, this
could
be available in 2-3 years, probably in Europe before the United States.
They won't have any difficulty finding subjects for the clinical trials.
Richard


[Non-text portions of this message have been removed]

Hi Everyone,

There was a very promising article in the LA Times today near the end
of the front section. Titled, "Common Enzymes Maybe First Remedy For
Digestive Disorder." It talked about an enzyme that has been
discovered that will not break down by the acids in the stomach. They
are hoping to put it in pill form that will break down gluten within a year.
(Sounds like the same principle of Lactaid pills for lactose intolerance.)
Article follows:

Common Enzymes May Be 1st Remedy for Digestive Disorder
Two studies find that the substances might 'take the worry out of
eating' for celiac patients, for whom breads and pastas cause intestinal
distress.

By Erin Cline, Times Staff Writer
June 30, 2006
An enzyme from a common fungus can break down gluten in breads
and pastas — and can survive in the acidic conditions of the human
stomach — opening the possibility for the first treatment of the
digestive disorder celiac disease, according to a study published today.
Dutch researchers said an enzyme called AN-PEP broke down gluten in
test-tube experiments relatively quickly, fast enough that patients
could take the enzyme with their meals to avoid the intestinal
inflammation they experience from gluten.
ADVERTISEMENT
  The findings, published in the American Journal of Physiology, follow a
study by Stanford University researchers published Monday describing
another enzyme, EP-B2, found in barley seeds, that gave similar
results.
Packaging the enzymes into pills could free celiac patients from the
constant battle to keep their diets free of gluten, a protein component
of grains such as wheat, barely and rye that shows up in many common
foods.
The enzymes could "take the worry out of eating" for celiac patients,
said biochemist Chaitan Khosla, leader of the Stanford group.
There is currently no treatment for the disease, which afflicts about 2
million people in the United States.
In celiac patients, gluten proteins interact with immune cells in the
small intestine and cause inflammation. Depending on the patient, the
immediate effects can range from mild bloating and fatigue to severe
cramping and diarrhea.
Some patients can suffer long-term effects, including malnutrition,
anemia and osteoporosis, which result from damage to the intestinal
lining that prevents nutrients from being absorbed.
Because symptoms vary widely, doctors often do not recognize the
disease — only about one sufferer in seven gets a proper diagnosis,
estimates say.
The resistance of both AN-PEP and EP-B2 to the harsh conditions of the
stomach is a key breakthrough.
Previously investigated enzymes could not survive in such conditions,
so they had to be targeted instead to the intestine — meaning the
gluten was late to break down in the digestive tract and could still
trigger inflammation.
The Dutch research group, led by immunologist Frits Koning at Leiden
University Medical Center, acquired AN-PEP from Dutch chemical
conglomerate DSM Corp., which holds a patent on the enzyme.
DSM officials had originally developed the enzyme for an industrial food
application, but they contacted Koning when they saw that gluten was
similar to the proteins they were working on.
Koning said that animal safety testing of AN-PEP had been conducted
and that his group was in the early stages of planning clinical trials.
Khosla's group has shown that EP-B2 is effective at breaking down
gluten in animals' guts. They are currently conducting animal safety
tests of EP-B2 and hope to begin clinical trials early next year, Khosla
said.

Cheryl

Thank you Mary and Richard for your valuable feedback.  It
really helped me to make my decision.  I did see Dr. Weinstein
this morning.  It was pretty much as you had described: you first must
fax all information from all of your doctors to him 1 week ahead, then
at your appt. time, you are seen by a fellow, then you are seen by him.

He does seem conscientious so I will wait and see.

I will keep you posted.

Sorry for the delay getting back to you, I've been out of town. I saw Fred
Weinstein at UCLA, about two and a half years ago. I would highly recommend him
for the biopsy. As Mary described, he is extremely knowledgable. I also had
the experience, however, of his not returning phone calls and being very
difficult to get ahold of. He's nice enough when you do reach him, conscientious
and
thorough in his answers to questions. But my impression of him is that he is a
researcher, not a clinician. I don't think he's particularly interested in
following people after he's biopsied them.
Incidentally, my experience differed from Mary's in that I don't recall
seeing a resident first. However, in terms of the phone calls, I quickly learned
that I was better off dealing with his nurse practioner or assistant, who could
refill prescriptions, answer questions, make referals and appointments. Dr.
Weinstein was also out of town a lot at various professional meetings and
conferences.
Richard


[Non-text portions of this message have been removed]

This is the reply I received from the company.

           RE: OzarkOrganics.com - Buying Club Requestadded to database.    Date:
Thu, 22 Jun 2006 11:13:59 -0500  Larry,
I'm pleased to hear of your interest in joining a buying club.
However, we
do not have a delivery site near you.  Let me know if you have
additional
questions.


Thanks,
Rebekah Mann
Customer Service Representative
Ozark Cooperative Warehouse
Phone: 479-521-4920 ext:240
Fax: 479-521-9100
www.ozarkorganics.com








ccemail@... wrote:

           any groups in santa monica?
claudia

On Saturday, June 17, 2006, at 02:01PM, Larry Larson <lalarson55@...>
wrote:

>
><<Original Attached>>

[Non-text portions of this message have been removed]






Larry Larson
**********************
My wellness solution is http://s-e-l-f.amazonherb.net

[Non-text portions of this message have been removed]

Yes, I was fortunate to have had a visit with Dr. Weinstein, years
ago, before my HMO barred us from campus specialists. I think you
are lucky to be able to see him. He and Lori Kam (now moved away,
but of the former county celiac center) are the only two gastro
specialists with whom I have felt understood.

Let me prepare you for the UCLA specialist scenario, though. It is a
teaching hospital, and that is Dr. Weinstein's primary role. (That
is why his hours and contact barriers are so rigid.) I am certain
that you will first be interviewed by one of his residents. It is
your opportunity to put a face on celiac disease for a new doctor.

Then the resident will pass along notes to Dr. Weinstein and sit in
on Dr. W's talk with you. In my case, Dr. W explained some of my
comments to the resident with such understanding of the celiac
history and condition, that I was quite moved. (Such as, "She
mentioned to you that her people are from the west of Ireland
because CD is so prevalent there." and "She mentions having taken
Flagyl in Southeast Asia, because for some celiacs, that is the
environmental trigger.")

As for reading biopsies, Dr. Weinstein's lab knows to stain the
epithelial cells of biopsy samples that do not have flattened villi,
because those cells start changing before the villi flatten out.

If your primary MD has not already, I expect that he will look at
your blood work results (CBC, ferritin, chemistry panel, B12 and
folate, etc.). If you are worried about osteoporosis, say so.

If you have continuing symptoms, like most wise gastro MDs, he'll
refer you to a knowledgeable dietician, and will advise you to keep
in touch with other celiacs about troubleshooting any diet problems.
No non-celiac MD--or even dietician--tries to stay abreast of all
the diet pitfalls that are out there.

(If your insurance coverage restricts which dietician you can see,
call CDF for the names of dieticians who are also celiacs. I don't
have personal experience with a good dietician, but I have heard
that others have.)

Even if you never get to see Dr. Weinstein again, you'll be able to
drop his name to any gastro MD you consult in future. His name will
mean something to any doc who has studied at UCLA or has attended a
Grand Rounds (continuing education) there.

Best wishes,
Mary



--- In Los_Angeles_Celiac@yahoogroups.com, "pizicotta"
<hulaisgr8@...> wrote:
>
> Has anyone had a personal experience with Dr. Wilfried Weinstein at
> UCLA?  I have heard
> that he is great at reading a biopsy, and I do have an appt.
scheduled
> for next week, HOWEVER, I am getting very turned off:  he takes no
> calls, he sees patients only 2 Mondays per month, and he is
completely
> unavailable by phone.  Since he is an unknown to me so far (other
than
> his reputation for the biopsy) I have concerns about wasting my
time
> with another arrogant, unavailable physician.
>
> I hope that somebody has had an experience to the contrary with
> him.  I would like to remain hopeful, but it looks bleak.
>

Has anyone had a personal experience with Dr. Wilfried Weinstein at
UCLA?  I have heard
that he is great at reading a biopsy, and I do have an appt. scheduled
for next week, HOWEVER, I am getting very turned off:  he takes no
calls, he sees patients only 2 Mondays per month, and he is completely
unavailable by phone.  Since he is an unknown to me so far (other than
his reputation for the biopsy) I have concerns about wasting my time
with another arrogant, unavailable physician.

I hope that somebody has had an experience to the contrary with
him.  I would like to remain hopeful, but it looks bleak.

I have a sofa, love seat and box spring/frame to give away. The box
spring is queen size, there is no mattress. It is in my storage locker
in Oceanside. I will give it to charity in two weeks.

Larry

I sent in a request for info about buy clubs in this area.

Larry Larson <lalarson55@...> wrote:          I am forwarding this for
those of you that are not on this other list.


David and Jennie Osborne <jennieaosborne@...> wrote:
To: Celiac Group <celiacspruedisease@yahoogroups.com>,
Celiac Kids <celiackids@yahoogroups.com>
From: David and Jennie Osborne <jennieaosborne@...>
Date: Sat, 17 Jun 2006 13:54:37 -0700 (PDT)
Subject: [Celiac Sprue Disease] Cheaper GF Products

I signed up with a co-op to get cheaper gluten free products. THey have organic,
and other items too, but the price is what the stores pay for it. I got Amanda
the donuts, and more. Yippy! I do have to meet a group of people and get my
items off the truck, but my bag is already put together. See if there is a group
in your area. This is a nationwide thing.

http://www.ozarkorganics.com

Jennie Osborne
Can I help you develop a child in your life into a spiritual champion?
www.jensnest.com
www.joinnest.com

---------------------------------
New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Non-text portions of this message have been removed]

Larry Larson
**********************
My wellness solution is http://s-e-l-f.amazonherb.net

[Non-text portions of this message have been removed]






Larry Larson
**********************
My wellness solution is http://s-e-l-f.amazonherb.net

[Non-text portions of this message have been removed]

any groups in santa monica?
claudia



On Saturday, June 17, 2006, at 02:01PM, Larry Larson <lalarson55@...>
wrote:

>
><<Original Attached>>


[Non-text portions of this message have been removed]

I am forwarding this for those of you that are not on this other list.


David and Jennie Osborne <jennieaosborne@...> wrote:
   To: Celiac Group <celiacspruedisease@yahoogroups.com>,
Celiac Kids <celiackids@yahoogroups.com>
From: David and Jennie Osborne <jennieaosborne@...>
Date: Sat, 17 Jun 2006 13:54:37 -0700 (PDT)
Subject: [Celiac Sprue Disease] Cheaper GF Products

         I signed up with a co-op to get cheaper gluten free products. THey have
organic, and other items too, but the price is what the stores pay for it. I got
Amanda the donuts, and more. Yippy! I do have to meet a group of people and get
my items off the truck, but my bag is already put together. See if there is a
group in your area. This is a nationwide thing.

http://www.ozarkorganics.com



Jennie Osborne
Can I help you develop a child in your life into a spiritual champion?
www.jensnest.com
www.joinnest.com

---------------------------------
New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Non-text portions of this message have been removed]






Larry Larson
**********************
My wellness solution is http://s-e-l-f.amazonherb.net

[Non-text portions of this message have been removed]

Hi Richard,

http://www.bu.edu/aldolase/HFI/index.html

This site might answer your questions.

Cheryl

>Prompted by Claudia's comment, does anyone know if there's a test for
>fructose intolerance or lactose intolerance? Perhaps a genetic abnormality
>that can
>be documented? Or are they more symptomatic, trial and error kinds of
>diagnoses?
>Richard

Prompted by Claudia's comment, does anyone know if there's a test for
fructose intolerance or lactose intolerance? Perhaps a genetic abnormality that
can
be documented? Or are they more symptomatic, trial and error kinds of
diagnoses?
Richard


[Non-text portions of this message have been removed]

Hi,

I went to Google and found this site that seems to describe and explain
fructose intolerance and fructose malabsorption, symptoms, diagnosis,
treatment etc. Hope this is helpful.

http://www.bu.edu/aldolase/HFI/index.html

I'm just wondering if those that feel they have gone gluten free for a
period of time and are still not feeling well might be experiencing a
fructose or lactose problem or some other intolerance. I thank who ever
orginally brought up "fructose" because it alerts us to something else to
watch for in our diets when we experience symptoms of unknown cause.

Cheryl

>On Tuesday, June 13, 2006 at 10:18AM, "claudia"ccemail@...> wrote
>
>thanks for the research on fructose ... how does one determine if she is
>fructose intolerant or has malabsorption?
>claudia

Hi everyone,

I apologize for this posting twice, might even show up three times. I looked
this information up after someone asked about fructose intolerance. Usually
you receive the email back when you post because you are part of the
"group". I didn't know why after I sent the email to the group I wasn't
receiving it back in my inbox. Anyway, three days later here it is! Probably
something to do with "hotmail"!

Hope everyone is well and happy!
Cheryl
>
>  Web
>
>Definitions of fructose malabsorption on the Web:
>
>* Fructose malabsorption is a condition in which the fructose carrier in
>enterocytes is deficient. Symptoms and medical tests are similar as in
>lactose intolerance. This condition is common in patients with
>symptoms of irritable bowel syndrome. An appropriate diet can help. A
>small proportion of patients with both fructose malabsorption and
>lactose intolerance suffers from coeliac disease.
>en.wikipedia.org/wiki/Fructose_malabsorption
>
>Web
>
>Related phrases:   hereditary fructose intolerance
>
>Definitions of fructose intolerance on the Web:
>
>* Fructose intolerance is a hereditary condition due to a deficiency of
>liver enzymes that metabolise fructose. Not to be confused with
>fructose malabsorption, a deficiency of fructose transporter enzyme in
>the enterocytes, which leads to bloating and diarrhea.
>en.wikipedia.org/wiki/Fructose_intolerance

This is a virus that is going around yahoo group. delete it.

suzannefrieder <suzannefrieder@...> wrote:          Whatever the message
was, it didn't come through. Want to try again?
thanks.

Suzanne






Larry Larson
**********************
My wellness solution is http://s-e-l-f.amazonherb.net

[Non-text portions of this message have been removed]

Hi,
   I'm glad it didn't!!
   This is a major warm virus spread on yahoo users yesterday. I got it thru
different group yesterday and it will spread it on everybody on your address
book even if you don't open any attachments! So if anybody receives an email
with the title 'new graphic site', don't even open the mail, because that's how
it spreads, just delete it!
   Per yahoo news, they have got this warm on control since yesterday, but it
might be still out there...
   sorry about this, it had attacked my email and sent it to everybody on my
behalf.
   Miia

suzannefrieder <suzannefrieder@...> wrote:
           Whatever the message was, it didn't come through. Want to try again?
thanks.

Suzanne





  __________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

Thanks for the definitions of the different definitions of
fructose...didn't know that.  Good information.

If you feel uncomfortable after eating too much Knickknick bread, you
probably have some kind of reaction to fructose.  But the truth is that
no one digests it.  It turns to fat.

Whatever the message was, it didn't come through.  Want to try again?
thanks.

Suzanne

thanks for the research on fructose ... how does one determine if she is
fructose intolerant or has malabsorption?
claudia



On Monday, June 12, 2006, at 11:37PM, Cheryl Morris <imrmorris@...>
wrote:

>
><<Original Attached>>


[Non-text portions of this message have been removed]

Definitions of fructose malabsorption on the Web:

* Fructose malabsorption is a condition in which the fructose carrier in
enterocytes is deficient. Symptoms and medical tests are similar as in
lactose intolerance. This condition is common in patients with symptoms of
irritable bowel syndrome. An appropriate diet can help. A small proportion
of patients with both fructose malabsorption and lactose intolerance suffers
from coeliac disease.
en.wikipedia.org/wiki/Fructose_malabsorption

Definitions of fructose intolerance on the Web:

* Fructose intolerance is a hereditary condition due to a deficiency of
liver enzymes that metabolise fructose. Not to be confused with fructose
malabsorption, a deficiency of fructose transporter enzyme in the
enterocytes, which leads to bloating and diarrhea.
en.wikipedia.org/wiki/Fructose_intolerance

Definitions of fructose malabsorption on the Web:

* Fructose malabsorption is a condition in which the fructose carrier in
enterocytes is deficient. Symptoms and medical tests are similar as in
lactose intolerance. This condition is common in patients with symptoms of
irritable bowel syndrome. An appropriate diet can help. A small proportion
of patients with both fructose malabsorption and lactose intolerance suffers
from coeliac disease.
en.wikipedia.org/wiki/Fructose_malabsorption

Definitions of fructose interolace on the Web:

* Fructose intolerance is a hereditary condition due to a deficiency of
liver enzymes that metabolise fructose. Not to be confused with fructose
malabsorption, a deficiency of fructose transporter enzyme in the
enterocytes, which leads to bloating and diarrhea.
en.wikipedia.org/wiki/Fructose_interolace

Web

Definitions of fructose malabsorption on the Web:

* Fructose malabsorption is a condition in which the fructose carrier in
enterocytes is deficient. Symptoms and medical tests are similar as in
lactose intolerance. This condition is common in patients with
symptoms of irritable bowel syndrome. An appropriate diet can help. A
small proportion of patients with both fructose malabsorption and
lactose intolerance suffers from coeliac disease.
en.wikipedia.org/wiki/Fructose_malabsorption

Web

Related phrases:   hereditary fructose intolerance


Definitions of fructose intolerance on the Web:

* Fructose intolerance is a hereditary condition due to a deficiency of
liver enzymes that metabolise fructose. Not to be confused with
fructose malabsorption, a deficiency of fructose transporter enzyme in
the enterocytes, which leads to bloating and diarrhea.
en.wikipedia.org/wiki/Fructose_intolerance

Note: forwarded message attached.
  __________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

Dear Richard and fellow celiacs,

Let's all remember that just something is GF food, doesn't mean it's
"healthy" food!

And sometimes other people's GF food isn't right for you. My partner once
complained about me going to a celiac meeting, "Oh, no, you always get sick
after one of those." He was right. None of it was "healthy" food. And with
the number of other food sensitivities I have, and the lack of ingredient
labels on home-made goodies, I'd usually eat something I couldn't tolerate.

So, label your contributions to GF potlucks, and watch what you eat, even at
a big GF spread!

Cheers,
Mary


> 1a. Re: Report on CDF Conference and Food Faire, May 20, 2006
>    Posted by: "bank29@..." bank29@... slidelezz
>    Date: Sun Jun 11, 2006 2:47 pm (PDT)
>
> Suzanne, you are terrific!
> I found your comment about fructose so interesting. While I learned a lot
> at
> the conference, I got really sick at it this year. I couldn't understand
> why,
> since I was clearly eating and sampling all this healthy food.

Thank you Richard.  If I find an internet cafe along the route I may
sign in and let you know what's going on.  I've been testing out gluten-
free bars and planning what to take to eat for a long time.  Then
yesterday I cut the food load down to 10 lbs.  I've been anticipating
that there would be problems naturally....already this morning when I
confirmed my flight, I learned that when my flight schedule was
changed, it cancelled out the gluten free meal.  These are the places I
am going:  Flying via Korean Air to Korea, changing planes and going to
Beijing, stay in Beijing for two days by myself to rest up.  Then on
the 16th, fly to Urumqi, China, the western part of China.  Then we
drive north in the Gobi Dessert to Mongolia, Kahzakstan, and the Altai
Republic.  This is a 30 day trip, 11 of the days will be camping in
tents because there won't be any hotels...Some of the hotels don't have
toilet facilities and we have to use out-houses.  This will be an
adventure and it will be a challenge with the food.
> Richard
>
>
> [Non-text portions of this message have been removed]
>

Suzanne,
Have a wonderful time! You sound very well prepared for the trip. We'lll look
forward to hearing about your adventures, gastronomic and otherwise.
Richard


[Non-text portions of this message have been removed]

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the Los_Angeles_Celiac
group.

   File        : /LA Health Providers rev 06112006.rtf
   Uploaded by : suzannefrieder <suzannefrieder@...>
   Description : List of MD's, Gastroenterologists & Dietians in the area

You can access this file at the URL:
http://groups.yahoo.com/group/Los_Angeles_Celiac/files/LA%20Health%20Providers%2\
0rev%2006112006.rtf

To learn more about file sharing for your group, please visit:
http://help.yahoo.com/help/us/groups/files

Regards,

suzannefrieder <suzannefrieder@...>

Hi Everyone,

Just want you to know I will be out of town from June 13th til July
22nd.

A meeting will be planned for early September, (probably a better time
than August with Summer vacations and all.)

Mary Courtney will be available for anyone who needs info.  And
naturally, you know to call Deborah Ceizler or Elaine Monarch at CDF,
818-990-2354.

Regards,

Suzanne

P. S. Wish me luck in staying gluten-free!

Hi Richard,

It was the first time I had heard that about fructose and had
originally understood that it concerned Celiacs.  However,  after
further research, I've learned that no one absorbs fructose, Celiac or
not. We may be more sensitive to it, though.

I also felt ill after the conference, I think it had to do with all the
food I ate.  I have been staying away from carbs (any kind of flour)
and sugar being not being less than the 5th ingredient, so it was a
shock to my system.

Suzanne