I think the most important advice I can give is to make sure your diet is
100% Gluten Free!!!  Last I knew Rootbeer is NOT GF!!!  I have had issues with
my
weight and I was told by a top notch nutritionist at Columbia, down in NYC,
that I would not be able to lose weight until I had the celiac disease under
control.   She was right.  I assume your disease is not under control and that
is why you are not losing; but gaining weight.....I had also gained.  See a
nurtitionist that can help you.  If you need help finding one, I know of 2 that
are excellent!

Good Luck,
mb


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

pierogis???   where did you find those or do you have a good recipe for them.
my daughter is celiac and would kill for pierogis.


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

Advice???  I was diagnosed (along with my son) two years ago.  I was sick for
almost 18 mos and no one could figure out what was wrong with me. I realize now
it was the Shingles I had that triggered it and after having shingles for
months, I was always sick.... I lost alot of weight (I was heavy) which I
thought was great.

Since being diagnosed I have put on 60lbs.  I am not a big eater and dont eat
junk. My biggest downfall is a rootbeer. I have twin sons(handicapped) and a
FULL+ time job, so I dont have time to sit and eat.  I have tried exercising 3-4
days a week and I gained more.  I have been told to eat 5-6 small meals a day. 
I dont have the time, and I defiinitely dont eat after 6pm.

Any suggestions???  Thanks!






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

I know everyone talks about how hard it is for their kids in
elementary and grade school, even up to high school...

But as a 21 year old, I thought I would just let you guys in on how
tough it is to be a celiac and a college student.

Now, I don't think that any of you are unawares of the problems any
school kid goes through, but it just seems to be ill-represented, and
if there are any college kids on here, it might help some.

To begin:  I wasn't born as a celiac.  Well, let me rephrase that.  I
was born with the sprue, but it hadn't manifested itself til I had
mono twice my senior year of highschool.

As any college kid, I reveled in the chance to eat what I want, when I
wanted.  My weakness?  Pizza hut personal pan Pizzas and their
breadsticks.  Of course I was eating Ramen noodles, and whatever else
I wanted.  But I went to bed almost every night with a stomach ache,
and felt even worse in the morning.

I lived like this for about a year, and was finally diagnosed with
Celiac disease.

But, now I was faced with a dilemma... What to eat?  Thank goodness
for my mom, who immediately jumped to my rescue by baking bread for
me.  It was a lot of trial and error, and finally we found some that I
liked (please see cfr_ie's post about bread!).

But mostly, I don't have time between classes and work (RIT's quarter
system of 10 week quarters means you have to get LOTS of work done in
a short amount of time).  I talked to many of the RIT foodservice
people and well, yeah.  Accomodating on the outside, but it does mean
more money spent by them, and well, it just isnt going to happen.  I
nearly have to pull teeth to find out what is good for me to eat and
what isn't, but in the end, I stay away from everything because no one
understands the fact that I need this stuff uncontaminated.  They were
going to carry the bread for me, but cross contamination from the
knives used and other such items hinders it entirely.

So, Sam's club has become my best friend.  Why?  Well, I completely
revel in buying bulk snacks I know I can eat.  Pudding 32packs for
about 5 dollars and fruit cups make up my in class snacks.  Jello with
fruit makes up my in-between class snacks, and I am completely
obsessed with Sushi made by Wegmans.  I also carry around blocks of
cheese and crackers, and even hummus that I snack on at home.  Best
thing you parents can get your celiac college student?  I would say a
little collapsible lunch bag that insulates, so we can bring cheese
and other items and throw them in our backpack.

My advice?  Its tough to be a college kid, no time to sit and make a
meal (well, at RIT at least).  Thank goodness for me, I have a
boyfriend whose dad is a celiac in Boston, and he completely
understands, even goes out of his way to get me food I can eat (what a
lucky girl I am, he recognized it before I even told him, and he has
been a complete lifesaver!).  I have stocked up on Thai Kitchen bowls
of soups that I can make (hearkening back to Ramen noodles... but so
much tastier), splurge on Sushi every so often (I am asking for a
sushi kit for Christmas), and am completely obsessed with Corn Crunch
'ems (cereal).  Mom keeps me well stocked for bread, and I am sadly
nearing the end of my Pierogies...... Amy's gluten-free cheese pizza
is actually pretty good, especially with some pepperoni on top and
some oregano, but I still prefer making my own white pizza with the
recipe from Bette Hagman (even my friends enjoy it more)!  I make her
vegetable quiche with the mashed potato crust often, and eat that for
breakfast lunch and dinner.

So, its tough, yes, but you can assuradly find some things to get you
through the day, especially on a minimal budget and time (like me).

Someday, maybe this can be so well known that I will be able to go to
a cafeteria with a section completely dedicated to gluten-free
goodies... but until then, I can only hope, and do this on my own.

*prayin for that pill... I miss my Pizza hut breadsticks...*

I have just been diagnosed with celiac disease about 2 month's ago.  I
go to Dr. Dorthy Trubish.  She belongs to Buffalo Gast. Group.  They are
located on Orchard Park Rd. in West Seneca.  You may have to wait about
2 month's to see her.  She is excellent.  She didn't give up on me until
she found out what was wrong w/me.  Also there are about 4 or 5 other
Dr's in the group.  My  Grandma goe to see Dr. Diaz-Ortez ( not sure of
the spelling) all of the Dr's in the group are VERY good.  Hope this helps.

Lynn




nc_wise wrote:

>I was diagnosed with celiac disease a year ago and have recently
>moved to the Buffalo area.  I am looking for a gastroenterologist who
>specializes in celiac disease.  Thanks.
>
>
>
>
>
>
>
>Yahoo! Groups Links
>
>
>
>
>
>
>
>
>
>
>

Neena,

I have had good results from Bette Hagman's bread recipes (the
Gluten-free Gourmet cookbooks - specifically, her bread cookbook).  My
daughter was diagnosed at 19, and after a lifetime of enjoying
home-baked goodies she is a tough critic of GF products.

Her favorite bread is Bette's rye-flavored loaf from the GF Gourmet
Bakes Bread cookbook, and she also likes the quinoa bread in the same
book.  I make the bread, slice it, and freeze it in sandwich bags, two
slices per bag.  It works well for sandwiches and is wonderful for
turkey stuffing.  I've even used Bette's pasta recipe to make GF
pierogies with tasty results.

Tops International carries most of the flours you would need to make
the breads.  I get the rice and sorghum flour from their Indian/Asian
section.  But the bags of garfava flour are small and I wanted to get
more - so I ordered 25 lb bags of tapioca, garfava, and potato starch
flours from Bob's Red Mills.  Unfortunately, shipping is expensive
because most GF flour suppliers are on the West Coast; however, this
method is still cheaper than buying the little 1.5-3 lb bags available
locally.  I keep the flours in a big Rubbermaid tote and mix 12 cups
of Bette's four-flour blend at a time.

I have a KitchenAid mixer that is very handy and makes the
bread-making easy.  I've not used a bread machine but you could do so
if you have one.

Good luck and happy eating!


Carol







--- In glutenfreeinwny@yahoogroups.com, Nohria Neena <neena2758@y...>
wrote:
> Hi Everyone, I am a new entrant to this world and am
> looking for a fool-proof recipe for regular sandwhich
> bread (I don't bake much)and if possible an economical
> place to buy the ingredients in bulk.
> Thanks so much
> Neena
>
>

Sarah,  to answer your question, Can celiac's eat things w/ modified food starch
in it?  Such as sour cream?

Here is the response from celiac.coms safe and forbidden food list.


Modified Food Starch1, 4
a.. 1) If this ingredient is made in North America it is likely to be
gluten-free.
a.. 4) Can utilize a gluten-containing grain or by-product in the manufacturing
process, or as an ingredient.

This paragraph is from the Gluten Intolerance Groups Quick Start Diet Guide.
www.GLUTEN.net

Labels
The key to understanding the GF diet is to become a good ingredient label
reader. Food labels containing the following ingredients are questionable and
should not be consumed unless you can verify they do not contain or are derived
from prohibited grains:



®        Brown rice syrup (frequently made from barley)



®        Caramel color (infrequently made from barley)



®        Dextrin (usually corn, but may be derived from wheat)



®        Flour or cereal products



®        Malt or malt flavoring (usually made from barley. Okay if made from
corn.)



®        Malt vinegar



®        Modified food starch or modified starch (from unspecified or forbidden
source)



®        Soy sauce or soy sauce solids (many soy sauces contain wheat)


Frequently overlooked foods that often contain gluten:


®        Breading

®        Broth

®        Coating mixes

®        Communion wafers

®        Croutons

®        Imitation bacon

®        Imitation seafood

®        Marinades

®        Pastas

®        Processed meats

®        Roux

®        Sauces

®        Self-basting poultry

®        Soup bases

®        Stuffings

®        Thickeners



If In Doubt Go Without!

If unable to verify ingredients or the ingredient list is unavailable - DO NOT
EAT IT.  Regardless of the amount eaten, it is not worth triggering your immune
system and the damage to the small intestine that occurs every time gluten is
consumed, whether symptoms are present or not.  Watch for any adverse reactions
when adding new foods to your diet.  Individuals may have sensitivity reactions
to foods other than gluten.

© Celiac Disease Foundation/Gluten Intolerance Group 3/2004 rev. 3


Mike

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

Dr Trubish is my favorite also.  You have to wait a couple months for the
initial appointment but it is worth it.  Her number is 716-677-6501x309.

Mike
----- Original Message -----
From: "nc_wise" <nc_wise@...>
To: <glutenfreeinwny@yahoogroups.com>
Sent: Friday, November 26, 2004 9:47 PM
Subject: [glutenfreeinwny] Looking for a Doctor


>
>
> I was diagnosed with celiac disease a year ago and have recently
> moved to the Buffalo area.  I am looking for a gastroenterologist who
> specializes in celiac disease.  Thanks.
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Nohria,

I have found that Glutino makes a few kinds of frozen bread loaves that aren't
too shabby.  They recommend that you toast the bread first, but it makes decent
grilled cheese sandwiches... and french toast :)  I've seen corn bread (which is
plain white bread made out of corn), fiber bread (similar to wheat) and golden
raisin bread.  They also make plain and sesame bagels as well as a frozen pizza
crust.  I'm sure there are many more products, these are just some available to
me in my area Wegman's.  As I said, it makes pretty comparable toasted
sandwiches, as long as you at least partially toast the sandwich before you
grill it, etc.

I hope this helps.  Good luck!

Amy Heim

Nohria Neena <neena2758@...> wrote:
Hi Everyone, I am a new entrant to this world and am
looking for a fool-proof recipe for regular sandwhich
bread (I don't bake much)and if possible an economical
place to buy the ingredients in bulk.
Thanks so much
Neena





---------------------------------
Do you Yahoo!?
  The all-new My Yahoo! – Get yours free!

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

I love Dr. Dorothy Trubish!


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

nc
Dr. Dorothy Trubish. Best of Luck and welcome!!
----- Original Message -----
From: "nc_wise" <nc_wise@...>
To: <glutenfreeinwny@yahoogroups.com>
Sent: Friday, November 26, 2004 9:47 PM
Subject: [glutenfreeinwny] Looking for a Doctor


>
>
> I was diagnosed with celiac disease a year ago and have recently
> moved to the Buffalo area.  I am looking for a gastroenterologist who
> specializes in celiac disease.  Thanks.
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

I was diagnosed with celiac disease a year ago and have recently
moved to the Buffalo area.  I am looking for a gastroenterologist who
specializes in celiac disease.  Thanks.

Hi Neena,

I can't really help you out, other than to say that I purchased a bread
machine and purchase packaged bread mix from The Gluten Free Pantry and The
Gluten
Free Mall.  Both brands of bread are kind of yucky.  Grilled cheese will never
be the same.  The breads are very dry and heavy.


Sarah

P.S.  Can celiac's eat things w/ modified food starch in it?  Such as sour
cream?


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

Hi Everyone, I am a new entrant to this world and am
looking for a fool-proof recipe for regular sandwhich
bread (I don't bake much)and if possible an economical
place to buy the ingredients in bulk.
Thanks so much
Neena




--- Mike Lodico <glutenfree@...> wrote:

>
> I tried this last night at the Pizza Plant and
> thought it was very good.  This is the first GF Beer
> I have had that tastes like beer. I would recommend
> it to anyone.   http://www.bardsbeer.com/  For the
> time being it is only available in the Western New
> York area but demand can change that.  If you are
> interested in this product and would like to see
> greater distribution send Kevin an email at
> kseplowitz@... .
>
> Mike
>
>
> ----- Original Message -----
> From: Kevin Seplowitz
> To: 'Mike Lodico'
> Sent: Tuesday, November 23, 2004 5:17 PM
> Subject: Bard's in Stores
>
>
> Mike,
>
>
>
> Our beer is now in available in Buffalo.  You can
> find it @
>
>
>
> Pizza Plant
>
> 8020 Transit Road
>
> Williamsville, NY 14221
>
> On Draft, bottles coming
>
>
>
> Premier Gourmet
>
> 3465 Delaware Avenue
>
> Kenmore, NY 14217
>
> In bottles
>
>
>
> Flying Bison Brewery
>
> 491 Ontario Street
>
> Buffalo, NY 14207
>
> Retail Hours: Friday 4pm-7pm, Saturday 11am-4pm ONLY
>
>
>
> Happy Thanksgiving!!
>
>
>
> Cheers,
>
> Kevin
>
>
>
>
>
>
>
>
>
>
>
> ******* Internet E-mail Confidentiality Disclaimer
> ********
> This e-mail message and any attachments may contain
> privileged or confidential information.  If you are
> not the intended recipient, you may not disclose,
> use, disseminate, distribute, copy or rely upon this
> message or attachment in any way.  If you received
> this e-mail message in error, please notify the
> sender immediately by return e-mail and delete it
> from your system.
>
> Bard's Tale Research Co, LLC and its affiliates do
> not accept liability for any errors, omissions,
> corruption or virus in the contents of this message
> or any attachments that arise as a result of e-mail
> transmission.
>
>
>
>
> [Non-text portions of this message have been
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>
>
>
> ------------------------ Yahoo! Groups Sponsor
> --------------------~-->
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>
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>
>
>




__________________________________
Do you Yahoo!?
The all-new My Yahoo! - What will yours do?
http://my.yahoo.com

Dear Jennie,
We recently had our 11 year old daughter diagnosed with celiac disease after
a long run of diarrhea and weight loss.  We took her to Dr. Thomas Rossi, a
pediatric Gastroenterologist out of Strong Memorial Hospital in Rochester,
NY.  He is the best and I wish you and your little one good health soon!
Linda

-----Original Message-----
From: JENNIE [mailto:neenie103161@...]
Sent: Saturday, November 20, 2004 1:12 AM
To: glutenfreeinwny@yahoogroups.com
Subject: [glutenfreeinwny] a query



i have a 2 year old i'm adopting and we have gone through 17 months
of chronic daihrea with her i finally got fed up with her doctors
diagnosis of lactose intolerance...this despite the fact i have
removed all milk products from her diet.... i did research on line
and found she fits the celiac sprue diagnosis to a tee.... and while
i'm waiting to get her a doctors appointment for this....i keep
getting put off by the receptionist...she wants me to come in for a
well baby visit and then when i do the doctor is indifferent to my
daughters condition...

i went ahead and changed her diet to gluten free... i figured it
couldn't hurt ... and most of her symptoms have vanished in the past
4 weeks,,,, the rest are improving....

now my question....can anyone tell me of a pediatrician who would
know what i'm asking or how to do a clinical diagnosis of my 2 year
old?? i live in medina but will travel where ever necessary to see a
competent doctor...

oh i just remembered....and this may sound stupid but here goes....
is play doh...the national brand gluten free??? i took hers away from
her because being a toddler she eats some of it and i don't want to
endanger her further by something as simple as play doh....







Yahoo! Groups Links

I tried this last night at the Pizza Plant and thought it was very good.  This
is the first GF Beer I have had that tastes like beer. I would recommend it to
anyone.   http://www.bardsbeer.com/  For the time being it is only available in
the Western New York area but demand can change that.  If you are interested in
this product and would like to see greater distribution send Kevin an email at
kseplowitz@... .

Mike


----- Original Message -----
From: Kevin Seplowitz
To: 'Mike Lodico'
Sent: Tuesday, November 23, 2004 5:17 PM
Subject: Bard's in Stores


Mike,



Our beer is now in available in Buffalo.  You can find it @



Pizza Plant

8020 Transit Road

Williamsville, NY 14221

On Draft, bottles coming



Premier Gourmet

3465 Delaware Avenue

Kenmore, NY 14217

In bottles



Flying Bison Brewery

491 Ontario Street

Buffalo, NY 14207

Retail Hours: Friday 4pm-7pm, Saturday 11am-4pm ONLY



Happy Thanksgiving!!



Cheers,

Kevin











******* Internet E-mail Confidentiality Disclaimer ********
This e-mail message and any attachments may contain privileged or confidential
information.  If you are not the intended recipient, you may not disclose, use,
disseminate, distribute, copy or rely upon this message or attachment in any
way.  If you received this e-mail message in error, please notify the sender
immediately by return e-mail and delete it from your system.

Bard's Tale Research Co, LLC and its affiliates do not accept liability for any
errors, omissions, corruption or virus in the contents of this message or any
attachments that arise as a result of e-mail transmission.




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

em,

In reference to colitis....interesting point that you make that it bothers
you on your right side.  I am a celiac, and I was also diagnosed with colitis
just over a year ago.  I was told it was due to marathon training.  I had to
stop running and my doctor told me to stop walking due to the pain on my right
side.  I don't know if there is a corelation between the 2, but I did have both
at one time.  I've since found out that I don't have the colitis
anymore....Perhaps stress was the issue, and not exercise or celiac?   I
recommend a
colonoscopy to find out the true diagnosis.

Don't know if that helps you any.
mb


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

Forgive me if I misspell any of this.  I was wondering if there is a
history of celiac causing chrons or colitis.  I was doing well for a
few months when I started the gluten free diet.  My blood test went
to normal and I felt great.  Then I became ill with a lot of pain on
my right side.  After months of sonograms and blood tests, my doctor
put me on asacol, which I read is for colitis, and all symptoms have
disappeared.  I see her on the 6th and was wondering if celiac could
cause it or if maybe I have other food allergies also.  I also read
somewhere that colitis is caused by food allergies.  Also, I have a
daughter who had only one blood test come back positive like me but
her doctor said that she will only consider her sensitive to gluten.
She told her to just cut back on gluten.  I have found that any
gluten tends to make her insides very upset.  She thinks that since
the doctor said she does not have celiac that she is fine and just
needs to cut back.  Any advice would be appreciated.  She is 14 so it
is difficult to control what she eats when she is not with me.  Sorry
for rambling on.
Thanks.

em

I found this on the ListServ.  Always check the label and possibly the supplier
prior to ingesting to be sure items are gluten free.
If anyone has any other GF Holiday items please feel free to share them with us.

Mike

Pilgrim's Pride (Wampler)  turkey products are gluten-free 
http://www.pilgrimspride.com/products/glutenfree.aspx

Cooks (800-332-8400) Per Kathy, all hams have no MSG or Gluten

*****Any Con Agra product will list wheat, rye or barley on the ingredients
statement.

Hillshire Farms (800-328-2426) Per website, call with UPC# and they will tell
you if GF

*****Are Hillshire Farm and Kahn's products gluten free?

We recommend you call 1-800-328-2426 (8 a.m. - 4:30 p.m. ET M-F) with the
product name and UPC number and we can give you this information. Ingredients
such as wheat, milk and eggs are not used as flavorings and are not included in
spice mixes.

Honeybaked Hams (800-367-7720) NOT GF per website

***** Do your hams have glutens in them? Our glaze does contain some wheat
(which is what glutens come from). So, the answer is yes.

Hormel Cure 81 -- bone in, boneless, and old fashion spiral (800-523-4635) GF
per website

***** BLACK LABEL Canned Hams

       CURE 81 Ham, Bone in, Boneless, Old Fashioned Spiral

Smithfield (757-357-1376) Per Linda Hansen

*****All smoked and country hams except honey glazed (honey contains wheat)

Best Choice (913-288-1488) per Ann Moyer,

*****All frozen turkeys are GF

Butterball (800-Butterball) Per Barb by phone

*****Fresh and Frozen turkey are GF except stuffed, discard gravy packets

If you have further questions regarding gluten in a Butterball product,please
call Consumer Affairs (1-800-325-7424). When calling, please have available the
UPC number of the product in question.

Honeysuckle White GF per website - info below

Does Honeysuckle White Turkey contain gluten or MSG?

All our products are MSG- and gluten-free. Even our deli meats. And we don't use
flour on the conveyor belts in any of our Honeysuckle White processing plants.

Jennie-O (800-621-3505) Prime Young Turkey and Turkey Breast GF per website

***** JENNIE-O Prime Young Turkey: fresh or frozen (gravy packet does contain
gluten)

    JENNIE-O Frozen Turkey Breast (gravy packet does contain gluten)


Sweet Sue Chicken Broth (800-682-7272) 99% fat free broth is gluten free as is
all beef broth

Swanson Chicken Broth (800-442-7684) 14 ounce can UPC 51000 02431 2 is gluten
free

Butterball Chicken Broth (800-288-8372) per email from Butterball 10/19/04

****The flour used in our products is often wheat flour and should be avoided by
individuals with gluten sensitivities. The modified food starch used in our
products is corn or potato starch unless otherwise stated on the ingredient
label. We always advise consumers who may have sensitivities to recheck the
ingredient list on each package. Products are often times reformulated and the
ingredients may change. If you have a question regarding a specific ingredient
in this product, please let us know.

Please verify the gluten free status of products often for your own protection.


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

Hi Jennie,  Play Doh is not gluten free.  Some people use Crayola Model
Magic as a substitute.  Here is a link to it
http://www.crayola.com/store/showdetl.cfm?product_id=1390&refprod=1390

Here is another link for recipes to make a substitute at home
http://www.enabling.org/ia/cel-kids/faq.html.

Regarding a diagnosis for your daughter. My recommendation is Dr. Thomas
Rossi who has offices in Batavia and Rochester.  Dr. Rossi is considered one
of (if not) the best Pediatric Gastros in the WNY area. His practice employs
a Dietician who is very knowledgeable on the GF Diet.  The office number is
585-275-2647.  Dr. Rossi used to head the Pediatric GI unit at Children's
Hospital in Buffalo.  I have had numerous opinions on other Pediatric GI's
in the WNY area but he is the only one that is always spoken highly of.

One other issue for her diagnosis is the fact she is on a GF diet.  To
properly diagnose celiac disease a person must be consuming gluten at the
time of screening. She will have to come off the GF diet (or ingest some
gluten daily) for an accurate diagnosis.  The time frame may be as long as
two months prior to testing.  I recommend contacting Dr. Rossi's office and
asking for his professional recommendation on this issue.  You could also
request your pediatrician to run the following blood tests as soon as
possible. Some people diagnosed with CD will continue to test positive for
months after beginning the gf diet. If this is the case you could save her
from further discomfort.

Anti-endomysial antibody (lgA EMA)
Anti-gliadin antibody (lgA & IgG),
Total IgA
Tissue transglutaminase (tTG IgA)

Be sure the script is written exactly as listed above.  Also ask for a copy
of the test results as many times I have seen the panel was not completely
performed.

Good Luck,
Mike Lodico
www.GLUTENFREEINWNY.com
www.GLUTENFREETSHIRTS.com

----- Original Message -----
From: "JENNIE" <neenie103161@...>
To: <glutenfreeinwny@yahoogroups.com>
Sent: Saturday, November 20, 2004 1:11 AM
Subject: [glutenfreeinwny] a query


>
>
> i have a 2 year old i'm adopting and we have gone through 17 months
> of chronic daihrea with her i finally got fed up with her doctors
> diagnosis of lactose intolerance...this despite the fact i have
> removed all milk products from her diet.... i did research on line
> and found she fits the celiac sprue diagnosis to a tee.... and while
> i'm waiting to get her a doctors appointment for this....i keep
> getting put off by the receptionist...she wants me to come in for a
> well baby visit and then when i do the doctor is indifferent to my
> daughters condition...
>
> i went ahead and changed her diet to gluten free... i figured it
> couldn't hurt ... and most of her symptoms have vanished in the past
> 4 weeks,,,, the rest are improving....
>
> now my question....can anyone tell me of a pediatrician who would
> know what i'm asking or how to do a clinical diagnosis of my 2 year
> old?? i live in medina but will travel where ever necessary to see a
> competent doctor...
>
> oh i just remembered....and this may sound stupid but here goes....
> is play doh...the national brand gluten free??? i took hers away from
> her because being a toddler she eats some of it and i don't want to
> endanger her further by something as simple as play doh....
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Jennie,
Unfortunately, in order to get a diagnosis of Celiac Disease, the child would
have to be actually consuming gluten.  The best test is an endoscopy and in
order for it to be completely correct, it must be reacting to gluten.
I don't actually agree with Drs. Baker at Childrens.  Our daughter was diagnosed
when we had no pediatric GI at Children's so we went to Rochester to see Dr.
Rossi who used to be the pediatric GI at Children's and left.  All of my
children now see Dr. Rossi.  It isn't that I didn't give the Bakers a shot. 
When they came, I heard both good and bad and wanted to give them the benefit of
the doubt.  One of my kids was having liver problems do to a congential problem
he was born with and was automatically seen by the Bakers since he was born
here.  They did a fine job with his liver and were able to get it back to
"normal".  However, when I questioned both of them in regard to Celiac Disease,
both of them advised me it is okay for a Celiac to have some gluten, especially
children since it is hard to get them to eat.  Once they said that, I knew I
would never take any of my children there again.  When I pushed them further and
questioned why every study I read indicated any amount of
  gluten could contribute to colon cancer and the like, they didn't really
respond and said the studies are not always correct.  I know from experience
that I can tell if my daughter has gotten into even the smallest crumb of
gluten.
SInce my daughter, Becca, was so very sick when she was diagnosed, Dr. Rossi
also requested we hold all dairy (casien - dairy protein) and although we have
tried to reintroduce several times, she will likely not be able to have dairy
either.  She was diagnosed just after her fifth birthday and is 9 1/2 now.
Commercial Play-Doh does have gluten.  We buy a tub of gluten free playdough
from www.discountschoolsupplies.com  It isn't as cheap as play-doh, but just as
fun.
I have lots of hints I would be happy to share if you would like to email me
privately.



Barb - loving wife of dan, blessed mother of eleven of God's special angels,
Chelsea 0:), Gabby, Halee,  Davin 0:), Becca, Ana, Emma, Kamryn 0:), Justin,
Oliver and Jasmine!!!




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

Hi Jennie,
     I completely sympathize with you. They think mothers dont know anything. 
You were right to try it on your own.  But Pediatric GI at Childrens are
excellent.... its a husband and wife team  Dr Baker and Dr Baker.    Call and
make the appt then when you see your pediatrician, you can get the referral
then.
Good Luck.

JENNIE <neenie103161@...> wrote:

i have a 2 year old i'm adopting and we have gone through 17 months
of chronic daihrea with her i finally got fed up with her doctors
diagnosis of lactose intolerance...this despite the fact i have
removed all milk products from her diet.... i did research on line
and found she fits the celiac sprue diagnosis to a tee.... and while
i'm waiting to get her a doctors appointment for this....i keep
getting put off by the receptionist...she wants me to come in for a
well baby visit and then when i do the doctor is indifferent to my
daughters condition...

i went ahead and changed her diet to gluten free... i figured it
couldn't hurt ... and most of her symptoms have vanished in the past
4 weeks,,,, the rest are improving....

now my question....can anyone tell me of a pediatrician who would
know what i'm asking or how to do a clinical diagnosis of my 2 year
old?? i live in medina but will travel where ever necessary to see a
competent doctor...

oh i just remembered....and this may sound stupid but here goes....
is play doh...the national brand gluten free??? i took hers away from
her because being a toddler she eats some of it and i don't want to
endanger her further by something as simple as play doh....




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

Hi Jennie,
     I completely sympathize with you. They think mothers dont know anything. 
You were right to try it on your own.  But Pediatric GI at Childrens are
excellent.... its a husband and wife team  Dr Baker and Dr Baker.    Call and
make the appt then when you see your pediatrician, you can get the referral
then.
Good Luck.

JENNIE <neenie103161@...> wrote:

i have a 2 year old i'm adopting and we have gone through 17 months
of chronic daihrea with her i finally got fed up with her doctors
diagnosis of lactose intolerance...this despite the fact i have
removed all milk products from her diet.... i did research on line
and found she fits the celiac sprue diagnosis to a tee.... and while
i'm waiting to get her a doctors appointment for this....i keep
getting put off by the receptionist...she wants me to come in for a
well baby visit and then when i do the doctor is indifferent to my
daughters condition...

i went ahead and changed her diet to gluten free... i figured it
couldn't hurt ... and most of her symptoms have vanished in the past
4 weeks,,,, the rest are improving....

now my question....can anyone tell me of a pediatrician who would
know what i'm asking or how to do a clinical diagnosis of my 2 year
old?? i live in medina but will travel where ever necessary to see a
competent doctor...

oh i just remembered....and this may sound stupid but here goes....
is play doh...the national brand gluten free??? i took hers away from
her because being a toddler she eats some of it and i don't want to
endanger her further by something as simple as play doh....




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---------------------------------
Yahoo! Groups Links

    To visit your group on the web, go to:
http://groups.yahoo.com/group/glutenfreeinwny/

    To unsubscribe from this group, send an email to:
glutenfreeinwny-unsubscribe@yahoogroups.com

    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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

i have a 2 year old i'm adopting and we have gone through 17 months
of chronic daihrea with her i finally got fed up with her doctors
diagnosis of lactose intolerance...this despite the fact i have
removed all milk products from her diet.... i did research on line
and found she fits the celiac sprue diagnosis to a tee.... and while
i'm waiting to get her a doctors appointment for this....i keep
getting put off by the receptionist...she wants me to come in for a
well baby visit and then when i do the doctor is indifferent to my
daughters condition...

i went ahead and changed her diet to gluten free... i figured it
couldn't hurt ... and most of her symptoms have vanished in the past
4 weeks,,,, the rest are improving....

now my question....can anyone tell me of a pediatrician who would
know what i'm asking or how to do a clinical diagnosis of my 2 year
old?? i live in medina but will travel where ever necessary to see a
competent doctor...

oh i just remembered....and this may sound stupid but here goes....
is play doh...the national brand gluten free??? i took hers away from
her because being a toddler she eats some of it and i don't want to
endanger her further by something as simple as play doh....

Here are crust and pie recipes from www.gfcfrecipes.com

Mike

http://www.gfutah.org/gfcfrecipes/pies&pudding.htm#Rolled%20Double%20Pie%20Crust
Rolled Double Pie Crust
Marlene Herron
1/2 cup tapioca flour
1/2 cornstarch
1/4 cup potato starch
1 cup sweet rice flour
1-1/4 tsp xanthan gum
1/2 tsp salt
1/2 tsp sugar
1/2 cup margarine
1/2 cup Crisco
1 medium cold egg
1 Tbsp GF vinegar
4 Tbsp ice water
Sweet rice flour, for rolling
   1.. Preheat oven to 400 F.  In medium mixing bowl combine  tapioca flour,
cornstarch, potato starch, sweet rice flour, xanthan gum, salt, and sugar.
   2.. With pastry blender, cut in margarine and Crisco until pieces are
pea-size.
   3.. Beat egg using a fork; add vinegar and ice water.  Stir into flour
mixture.
   4.. Knead to form a ball (it is better to be a little too moist than too
dry).  Cover with plastic wrap and refrigerate  for one hour for easier
handling.
   5.. Roll out pastry on a cornstarch dusted pastry cloth and covered
rolling pin.  (May roll out pastry between sheets of plastic wrap or waxed
paper.)  To transfer pastry, wrap it around rolling pin; unroll onto pie
pan.  Shape to fit pan, trim edges leaving 1/2-inch, fold under.  Flute
edges using fingers.
   6.. For a baked crust, prick bottom crust with a fork about 5 times.  Bake
for 10-15 minutes or until slightly browned.  Cool before filling.
Note:  For 2-crust pie, roll out bottom crust.  Pour filling into crust.
Roll out top crust and place over filling.  Trim edges leaving 1/2-inch,
fold under bottom crust to seal.  Flute edges with fingers.  Bake as
directed for filling used.
top of page



Cookie Crumb Crust
   1-1/2 cups cookie crumbs
   1/4 cup sugar
   1/2 cup melted margarine
   1.. Mix margarine, sugar, and crumbs together and press into 8 or 9-inch
pie pan.
   2.. Bake 8 minutes at 375 F. Cool.
Note:  To make cookie crumbs, pulverize cookies in blender or place them in
sturdy plastic bag and roll into fine crumbs with rolling pin. Home-made
graham crackers or store-bought gluten-free shortbread cookies make good
crumbs.
top of page



Walnut Streusel Topping
   1/2 cup rice flour
   1/4 cup sugar
   1/4 cup brown sugar
   1/4 tsp ground cinnamon
   1/4 tsp ground nutmeg
   1/4 cup cold margarine
   1/2 cup walnuts, chopped fine
   1.. Combine flour, sugars and spices.
   2.. Cut in cold margarine with knife or pastry blender until mixture is
coarse and crumbly.  Stir in walnuts.
   3.. Sprinkle over pie or use as directed in recipe.
top of page



Apple Pie

   5 cups peeled, cored and sliced baking apples
   3/4 cup sugar
   3 Tbsp cornstarch
   1 tsp ground cinnamon
   unbaked 8-inch double pie crust
   1.. Preheat oven to 400 F.  Mix cinnamon, cornstarch, and sugar together
and stir in with apples in a medium bowl.
   2.. Spread apple mixture in an unbaked pie shell.
   3.. Cover with top crust and crimp edges with fingers to seal. Cut slits
in top.
   4.. Bake for 10 minutes. Turn oven to 350 degrees F and continue cooking
for 30 to 40 minutes, or until crust is lightly brown.
French Apple Pie:
Use unbaked single pie crust and sprinkle on walnut streusel on the top.
top of page



Pumpkin Pie

   2 large eggs
   15 ounce can pumpkin
   3/4 cups sugar
   1/2 tsp salt
   1 tsp ground cinnamon
   1/8 tsp ground nutmeg
   1 1/2 cups milk substitute
   unbaked deep-dish 9-inch pie crust
   1.. Preheat oven to 425 F.  Beat eggs lightly in a medium bowl.
   2.. Stir in pumpkin, sugar, salt, cinnamon, nutmeg, and milk sub. Pour
into pie shell.
   3.. Bake at 425 F for 15 minutes. Reduce heat to 350 F and bake 1 hour or
until the center is soft set.  Pie will set firmer after it cools (over
night in refrigerator is best).
top of page



Peach Pie
Marlene Herron

   3/4 cup sugar
   3 Tbsp cornstarch
   1/4 tsp ground cinnamon
   1/8 tsp salt
   2 Tbsp margarine
   5 cups peeled and sliced peaches unbaked 8-inch double pie crust
   1.. Preheat oven to 400 F.  Combine sugar, cornstarch, cinnamon, and salt.
Cut in margines.
   2.. Add peaches, toss gently, and spoon into unbaked pie shell.
   3.. Top with pie crust.  Cut steam vents.  Moisten edges and seal.  Flute
edges.
   4.. Bake for 45 to 50 minutes.
One Crust Peach Pie:
Use unbaked single pie crust and sprinkle on walnut streusel on the top.


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

I have purchased pie crusts pies and other goodies from Celiac Specialties.
e-mail
www.celiacspecialties.com
   ----- Original Message -----
   From: bvtc6677
   To: glutenfreeinwny@yahoogroups.com
   Sent: Thursday, November 18, 2004 1:16 PM
   Subject: [glutenfreeinwny] Thanksgiving



   Does anyone know some good recipes for pie including pie crust.  I
   would like to make some pumpkin pie and some other kind for
   Thanksgiving this year.  Thanks.




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

YES!!!

I bought Gluten Free Pantry's Pie Crust Mix from my local grocery store, and
it came out great!!!

I made a pumpkin pie and followed the recipie on a can of Libby's pumpkin
that I had picked up.  When I get home I'll look it up and email it to you
tomorrow.

-mb


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

Does anyone know some good recipes for pie including pie crust.  I
would like to make some pumpkin pie and some other kind for
Thanksgiving this year.  Thanks.

We are students at Boston College and are doing a class project on Celiac
Disease.  We are researching how people affected by celiac disease determine
what types of food they can purchase and what influences these decisions.
The purpose is to consider how we can improve this process.

We have created a survey and would like to ask for your help in passing this
along via email to members of your support group or organization. We will
analyze the data and provide your organization with the results if you are
interested.  We believe that this will help us to understand the disease
better and ultimately help people with coping with it.

Please provide us with the estimated number of total members and active
members in your organization or area.  Because of the deadlines we are
facing for school, we would like to request responses from your members by
11/20/04. Additionally, if you have administered surveys in the past, which
fit our research objective, could we acquire your findings?  This would
greatly assist us in our attempt to understand how people cope with Celiac
Disease.

We sincerely appreciate your help in this matter.  Any suggestions or
additional information you can provide us with would be a great help.  Thank
you for your time and consideration.  In the event you would like to discuss
this in detail, please do not hesitate to call 617 388 9263 or 617 834 0552
or email us your number and a time to call and we will do so.

Sincerely,

Jody Pekala, David Chiaruttini, Kevin Phillips, Vera Kumalasari, Alex Uzgin

Boston College
Carroll School of Management


Please click on the link below to access the survey

http://www.zoomerang.com/survey.zgi?p=WEB223WYZSY3DC

DRUG THERAPY FOR OSTEOPOROSIS CELIAC DISEASE CENTER AT COLUMBIA NEWSLETTER
10-08-04

Celiac Disease Center at Columbia

Columbia University College of Physicians and Surgeons

New York - Presbyterian Hospital

161 Fort Washington Avenue

New York, NY 10032

www.celiacdiseasecenter.columbia.edu

212-305-5590



DRUG THERAPY FOR OSTEOPOROSIS



We get many questions about the management of osteoporosis, especially whether
patients should be placed on agents that act on the bones as anti-resorption
agents such as Fosamax. We have advocated that patients with reduced bone
density, and celiac disease, be treated by the use of calcium supplements and a
gluten-free diet. Only if the bone density does not improve, and calcium
absorption normalizes, would we advocate use of these drugs. Bone density
usually improves on this regime.

A patient sent us information that they received from the manufacturer of
Fosamax, Merck & Co. We also checked with Merck. We received information
concerning FOSAMAX (alendronate sodium) tablets and oral solution. Their
information states that FOSAMAX is not indicated for the treatment of
osteoporosis secondary to Crohn's disease, inflammatory bowel disease, celiac
disease or malabsorption syndromes.

Here is what we advise. Serum calcium (the calcium in the blood) is maintained
carefully for heart and muscle function by absorption from the gut, and from
resorption from the bones. In the setting of active celiac disease and poor
absorption of calcium, due to malabsorption, the bones are providing the main
source of the serum calcium. The addition of a medication blocking bone
resorption can result in a fall in serum calcium. Therefore, we advise that
osteoporosis, in patients with celiac disease, be initially treated with a
gluten-free diet and adequate oral calcium. This should be for at least a year.
Then a repeat of the bone mineral density can be performed. If necessary,
Fosamax can be added if there is adequate calcium absorption. Calcium absorption
is usually assessed by a 24 hour urinary calcium test.

We have seen many patients with both celiac disease and osteoporosis that are
doing well on drugs that include Fosamax and similar drugs. However, caution
should be used if they are administered early in the course of celiac disease.

This information should not replace information provided from your physician who
has detailed knowledge of individual patient's care.




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