Sami's Bakery

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susan gilson

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Jan 6, 2010, 7:04:32 AM1/6/10
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I was excited to find something that looks like real bread at the health food store. It was in the gluten free section,but when I got home and looked more closely at the label it has no gluten,but says it is not made in a gluten free facility. It is Sami's Bakery  Millet and Flax bread, made in Tampa Fl. Has anyone had it and was it safe.
Thanks

Nora Mollmann

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Jan 6, 2010, 7:26:09 AM1/6/10
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Hi,
 
I've heard from many sources that Sami's bread is seriously cross contaminated and tests have shown high levels of gluten. I goggled it and found this information: 
 
 
 
 
Nora


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susan gilson

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Jan 6, 2010, 7:44:58 AM1/6/10
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Thanks Nora, any recommendations for good bread?

Miriam Raider-Roth

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Jan 6, 2010, 8:11:05 AM1/6/10
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My daughter really likes the sandwich bread that whole foods makes (their bakery label)

Renee J. Reed

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Jan 6, 2010, 8:23:28 AM1/6/10
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I love the bread from Sinfully Gluten Free Bakery in Dayton (Miamisburg) . To me the frozen breads are so dry. I order the bread online from Sinfully GF when I can’t get up there and it’s not that expensive to ship—plus its fresh.  I keep it in the refrig and it lasts pretty long time. (The other goodies are good too) They also sell it at Dorothy Lane Market in Springboro

Jo Blair

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Jan 6, 2010, 8:52:50 AM1/6/10
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I agree with you Renee ... Sinfully Gluten Free has the best bread!

I have a question ... is Jello gluten free? 

Michelle Harrison

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Jan 6, 2010, 4:54:33 PM1/6/10
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I really liked the Sami’s bread and had no problems with it, but my son got sick twice once from the bread and another after the pizza crust.   We like Sinfully GF as well or the whole foods bread. 

 

All of the jello we have made/had is GF we use jello brand.

melaniech...@fuse.net

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Jan 8, 2010, 10:11:38 AM1/8/10
to cinci...@googlegroups.com, susan gilson
My daughter likes Gluten-Free Pantry's favorite sandwich bread mix. It bakes up nicely and easily in a bread maker. It makes great grilled sandwiches too.

We also recently discovered GF Pantry's spice cake & gingerbread mix. I found it at Susan's World in Anderson Township. It made the whole house smell yummy and was delicious. I had to use an egg substitute so my other daughter could eat it and it worked great. It would also make a great base for a coffee cake. Next time I'll add a brown sugar topping.
Melanie


---- susan gilson <sgil...@gmail.com> wrote:
> Thanks Nora, any recommendations for good bread?
>
> On Wed, Jan 6, 2010 at 7:26 AM, Nora Mollmann <nora.m...@gmail.com>wrote:
>

> > *Hi,*
> > **
> > *I've heard from many sources that Sami's bread is seriously cross


> > contaminated and tests have shown high levels of gluten. I goggled it and

> > found this information: *
> > **
> > *http://forums.glutenfree.com/topic6532.html*
> > **
> > *
> > http://www.merchantcircle.com/business/Samis.Bakery.813-989-2729/review/read?cid=753029
> > *
> > **
> > **
> > *Nora*
> >
> > ----- Original Message -----
> > *From:* susan gilson <sgil...@gmail.com>
> > *To:* cinci...@googlegroups.com
> > *Sent:* Wednesday, January 06, 2010 7:04 AM
> > *Subject:* [cinciceliac] Sami's Bakery


> >
> > I was excited to find something that looks like real bread at the health
> > food store. It was in the gluten free section,but when I got home and looked
> > more closely at the label it has no gluten,but says it is not made in a
> > gluten free facility. It is Sami's Bakery Millet and Flax bread, made in
> > Tampa Fl. Has anyone had it and was it safe.
> > Thanks
> >

> > ------------------------------


> >
> > --
> > You received this message because you are subscribed to the Google Groups
> > "Cincinnati Celiac Support Group" group.
> > To post to this group, send email to cinci...@googlegroups.com.
> > To unsubscribe from this group, send email to

> > cinciceliac...@googlegroups.com<cinciceliac%2Bunsu...@googlegroups.com>


> > .
> > For more options, visit this group at
> > http://groups.google.com/group/cinciceliac?hl=en.
> >
> >
> > --
> > You received this message because you are subscribed to the Google Groups
> > "Cincinnati Celiac Support Group" group.
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> > cinciceliac...@googlegroups.com<cinciceliac%2Bunsu...@googlegroups.com>

Anne Rolfert

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Jan 8, 2010, 3:20:55 PM1/8/10
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I just got my kids blood test results today,  My daughter tested positive for Celiac.  She is in 2nd grade.  Aside from the obvious food issues, what do I need to look our for at school?  Any art supplies, other than play doh, that might be used or anything else in school that could contain gluten that she should stay away from?
Thanks!
Anne

Mary Haller

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Jan 8, 2010, 3:32:00 PM1/8/10
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I am a second grade teacher that has Celiac myself. The one thing you must do is sit down with her teacher or teachers and explain what celiac is and is not.... Also you must educate your daughter.  At second grade level she most likely doesn't put her hands in her mouth often and play doh if kept on the outside of the body isn't a problem.
 
I like to educate the children in the room also. We have in our room a celiac boy and we have a lot of fun together. I have a drawer full of eats that he and I can have if someone has a birthday or we have a party. His mother helped put that together.
 
Mary

Date: Fri, 8 Jan 2010 12:20:55 -0800
From: arol...@yahoo.com
Subject: [cinciceliac] kids test results
To: cinci...@googlegroups.com


I just got my kids blood test results today,  My daughter tested positive for Celiac.  She is in 2nd grade.  Aside from the obvious food issues, what do I need to look our for at school?  Any art supplies, other than play doh, that might be used or anything else in school that could contain gluten that she should stay away from?
Thanks!
Anne



Hotmail: Powerful Free email with security by Microsoft. Get it now.

Michelle Young

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Jan 8, 2010, 3:38:17 PM1/8/10
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One thing that comes to mind is if they create anything using cereal or macaroni products.

 


From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com] On Behalf Of Anne Rolfert
Sent: Friday, January 08, 2010 3:21 PM
To: cinci...@googlegroups.com
Subject: [cinciceliac] kids test results

 

I just got my kids blood test results today,  My daughter tested positive for Celiac.  She is in 2nd grade.  Aside from the obvious food issues, what do I need to look our for at school?  Any art supplies, other than play doh, that might be used or anything else in school that could contain gluten that she should stay away from?

Thanks!

Anne

 

Anne Rolfert

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Jan 8, 2010, 3:48:24 PM1/8/10
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oh yeah- hadn't thought about that. Thanks!

--- On Fri, 1/8/10, Michelle Young <mixed...@live.com> wrote:

From: Michelle Young <mixed...@live.com>
Subject: RE: [cinciceliac] kids test results
To: cinci...@googlegroups.com

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Anne Rolfert

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Jan 8, 2010, 3:49:08 PM1/8/10
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thanks for that information

--- On Fri, 1/8/10, Mary Haller <mlha...@hotmail.com> wrote:

Jo Blair

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Jan 8, 2010, 4:04:05 PM1/8/10
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http://www.celiaccentral.org/SiteData/docs/Gluten-Free-Candy-List/370e802df5a4b099ad419d940cf8fe22/Gluten-Free-Candy-List.pdf

 

Here is a form for school.  I copied and paste just in case you cannot get the attached site.  I thought this was a wonderful idea for gluten free kids and school.

 

Gluten-Free Snack and Candy list

Anything obviously made with Wheat Flour — Cake, Cupcakes, Cookies, Pretzels, Crackers — should not be given to

____________________. If you notify me, _____________________, at _______________ a day or two before, I can bring

a substitute treat. The following list of snacks and candies ARE ALLOWED in _________’s diet. If you could please suggest

these brands to parents on party sign-up sheets or for birthday party treat bags, I would greatly appreciate it. Thank you!!

SNACKS

Lays STAXX (All flavors)

Ruffles Regular potato chips

Dorito Rollitos

Mission Tortilla chips

Orville Redenbacher’s popcorn

Act II popcorn (except extreme butter)

Jiffy Pop Popcorn

Crunch ‘n Munch

JellO Brand gelatin and

pudding snacks

Del Monte Pudding cups

French’s Potato Sticks

Torrengos white corn chips — all

Frigo/Kraft/Sargento cheese sticks

Oscar Mayer Beef Hot Dogs

Oreida French Fries

Old Wisconsin Beef sticks

Hormel Pepperoni

((GLUTEN FREE versions of cookies,

pretzels, crackers, cupcakes)

FRUIT SNACKS

Kroger’s Fruit snacks

Nabisco Fruit snackså

General Mills Fruit snacks

Farley’s Brand gummy bears

Favorite Brand gummy and fruit

Fruit to Go (SunRype)

Trolli Gummi Candies—all

Fruit by the foot

Sunkist Fruit Rolls

Sun-Maid Raisons

Welches Fruit snacks

JUICE BOXES

Mott’s — all

Minute Maid — all

Del Monte

Juicy Juice — all

Capri Sun

Hawaiian Punch

KoolAid — all

Northland 100% Juice

Welches juices — all

Libby’s — all

DRINKS

Coke, Sprite, Minute Maid

Pepsi, Mountain Dew, Sierra Mist

7-Up, A&W Root Beer, Country Time

Big K brand soft drinks

Snapple — all

Crystal Lite

Swiss Miss

ICE CREAM NOVELTIES

Flintstones pushups

Dole Fruit N Juice bars

Edy’s/Dreyers Fruit Bars

Koolaid Freezer pops

Nestle’s Popsicles

Starburst fruit Juice bars

Minute Maid Fruit juice bar

Good Humor Popsicles

PhillySwirl frozen stix

Fla-Vor-Ice

ICE CREAM

(Vanilla, Chocolate & Chocolate chip are

usually safe, avoid obvious ingred)

Baskin Robbins

Edy’s Grand

Edy’s Homemade

Ben&Jerry’s

Blue Bell

Blue Bunny

TCBY

Cool Whip

Dairy Queen

Dreyers

CHOCOLATE CANDY

Hershey’s Kisses & Hugs

Hershey’s milk chocolate bars

(except crispie or cookie)

Hershey’s Nuggets (except cookie)

M&M’s (except crispie)

Nestle Butterfinger BB’s

Nestle Chunky

Raisinets

Reese’s Peanut Butter cups

3 Musketteer’s

Baby Ruth

Butterfinger

Snickers

Clark Bars

Dove

York Peppermint Patties

CHEWY CANDY

Flavor Rolls—all

Jellybelly jellybeans

Tootsie Rolls—all

Starburst Fruit Chews

Jolly Rancher Fruit Chews

Double Bubble — all

Wrigley’s chewing gum — all

Trident gum — all

Skittles

Milk Duds

Airheads

Big League Chewing Gum

Bubble Yum — all

Chicklets

Dentyne Gum — all

Haribo Gummies

Sharie’s Candies Gummies

Trolli Gummies

Gold Medal Cotton Candy

HARD CANDY & SUCKERS

Charms—all

Farley’s hard candies

SweeTarts

Spree

BitOHoney

Spangler DumDum Pops

Tootsie Pops

Extreme Pops

LifeSaver’s—all

Jolly Rancher hard candy & Lollipops

Topps Ring Pops

Pez

Smarties

Wonka: Bottlecapss, gobstoppers, mix ups, pixy stix,

shocktarts, tart 'N tiny, fun dip (lik-M-Aid), Laffy taffy,

Nerds, Runts, Tangy Taffy, Nips.

Haviland (Necco) Candy Stix

SEASONAL CANDY

Christmas

Spangler candy canes

Valentine

Spangler DumDum pops

Spangler picture pops

Necco Conversation Hearts

Elmers Small Talk Conversation Hearts

Luv Pops (Heart-shaped w/Mickey & Minne on wrapper)

Easter

Spangler picture pops

JustBorn Marshmellow peeps

JustBorn Jelly Beans

Halloween

Farley’s candy corn

Spangler picture pops

Jellybelly candy corn

SCHOOL PRODUCTS

CRAYOLA (800-CRAYOLA)

ALL Crayola products are GF EXCEPT Crayola Dough.

This includes: Markers;Washable markers; 3D markers;

Chalk; Oil pastels; Mess Free Color Wonder; Jumping

Colors; Model Magic; Crayons (regular, washable and

metallic); Colored Pencils; Glue Paint; Silly Putty

ELMER

ALL Elmer brand products are GF EXCEPT Finger

Paints which contain wheat. This includes: Tempera

paints; Paint pens; All glue; Mucilage; All purpose Glue

Stick; Glitter; Glitter Shakers

PALMER PAINT (800-521-1383)

All Palmer Paints are gluten free.

ROSS PRODUCTS (888-435-6377)

ALL Ross products are GF EXCEPT for the Finger

Paints. This includes: Ross White Glue; Glue Sticks;

School Glue

LAKESHORE Learning Materials

(800-428-4414) ink pads contain wheat protein.

CENTER ENTERPRISES

(800-542-2214) would not guarantee whether or not

their ink pads contain wheat.

PRANG Washable Paint

(800-824-9430) and NASCO Washable Tempera Paints

(800-558-9595) are both gluten free.

MAGIC; Crayons (regular, washable and metallic);

Colored Pencils; Glue Paint; Silly Putty NOTE:

(vp=05/02) Washable Finger Paints contain Dextrins.

My child, ___________ ______________

has Gluten Intolerance (Celiac Disease)

and can not eat the school food.

Please serve snacks and lunch from

____________’s backpack.

gluten

wheat

barley

rye

enriched white flour

all purpose flour

cookies

bread

buns

cake/cupcakes

crackers

cereal

doughnuts

poptarts

pretzels

pancakes

waffles

pie

pasta noodles

spaghetti

Chocolate with

Crispies or Cookies

Twizzlers

candy not on safe list

ice cream (verify)

cheese sauces

processed cheese

hot dogs (fillers)

gravy

soup

margarine

malt vinegar

vegetable oil (verify)

spices (verify)

flavorings

food coloring (verify)

MSG

salad dressings

mayonnaise

Oreida Tator Tots

pickles (verify)

Suntan lotion (verify)

hand lotion (verify)

Soaps with Wheat

Germ oil

Toothpaste (verify)

Papier Maché

PlayDoh

FingerPaint

Straw

SAFE FOODS

Anything provided from home

(gluten-free baked goods/cookies/

cakes/bread/pizza/pastas)

milk

juice (see list provided)

Fresh fruit

Fresh vegies

Corn flour/Cornstarch

Rice flour

Potato flour

popcorn (see list provided)

Jello

Jello Pudding

GF Cereal provided from home

Cheese provided from home

Coke and Pepsi products

Butter

Corn oil or Soybean oil

Apple cider vinegar

Duncan Hines white frosting in can

jams and jellies

peanut butter

meat

potatoes

Oreida French Fries

Cascadien Farms Spud Puppies

rice or potato pasta & noodles

Oscar Mayer Beef Hot Dogs

Heinz Catchup

Vlassic Pickles

eggs

Potato chips – Lays/Ruffles plain

Doritos Rollitos

Lays StaX chips

Annie’s Natural Salad Dressings

Nestle IceScreamer Popsicles

CANDY (see list provided)

ICE CREAM (see list provided)

McDonald’s Cheeseburger Happy

Meal (burger, cheese and pickles

must be put in box using plastic

gloves, NO bun, cannot even touch

bun! French fries and ketchup is ok.)

UNSAFE FOODS

Thank you for your cooperation in creating a wheat/barley/rye-free environment for ________________.

There are informational flyers in his folder, or ask his parent if you have any additional questions.

•Please have _______________ wash hands before eating or use WetOnes wipes provided.

•Keep his eating area free from crumbs of unsafe foods to lessen chance of cross-contamination. Wipe table with WetOnes.

•When serving food, serve ______________ first with clean, washed hands and before touching other wheat-filled food

to lessen chance of cross-contamination.

•Never give ________________ treats, snacks, food without first verifying his gluten free snack/candy list or with parents.

•Not all Brands of food are created equally, sometimes we only need to find a different Brand of food that’s safe to eat.

•Playdoh is NOT gluten free. Crayola Model Magic clay is a safe alternative.

•Papier Maché is NOT gluten free. Please ask parent for alternative recipes.

•________________ can NOT be around flour, especially in a room where flour may be floating in the air. (Kitchen/

bakery/art project)

•When creating art with noodles, please ask parent to provide rice noodles from home.

•Ink pads, finger paints, lick stamps and lick envelopes contain gluten.

•For parties or birthdays, please alert parent ahead of time to bring in special treat so _________________ won’t be left out.

•Parent can provide a box of safe treats for teacher to store for surprise treat occasions.

•The wrong food will cause GI symptoms (_________________________________). Please let parent know when this happens.

•Call __________________ if you have any questions at all. Thank you!

 

From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com] On Behalf Of Anne Rolfert


Sent: Friday, January 08, 2010 3:21 PM
To: cinci...@googlegroups.com

Subject: [cinciceliac] kids test results

 

I just got my kids blood test results today,  My daughter tested positive for Celiac.  She is in 2nd grade.  Aside from the obvious food issues, what do I need to look our for at school?  Any art supplies, other than play doh, that might be used or anything else in school that could contain gluten that she should stay away from?

Thanks!

Anne

 

Erin Linduff

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Jan 8, 2010, 4:06:35 PM1/8/10
to cinci...@googlegroups.com

At our school the kids have access to mailing envelopes…you’ll want to let your daughter know that she should not lick the envelope.

 


From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com] On Behalf Of Anne Rolfert
Sent: Friday, January 08, 2010 3:21 PM
To: cinci...@googlegroups.com
Subject: [cinciceliac] kids test results

 

I just got my kids blood test results today,  My daughter tested positive for Celiac.  She is in 2nd grade.  Aside from the obvious food issues, what do I need to look our for at school?  Any art supplies, other than play doh, that might be used or anything else in school that could contain gluten that she should stay away from?

Thanks!

Anne

 

Anne Rolfert

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Jan 8, 2010, 4:50:34 PM1/8/10
to cinci...@googlegroups.com
thank you!

--- On Fri, 1/8/10, Erin Linduff <dave...@fuse.net> wrote:

From: Erin Linduff <dave...@fuse.net>
Subject: RE: [cinciceliac] kids test results

Anne Rolfert

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Jan 8, 2010, 4:51:01 PM1/8/10
to cinci...@googlegroups.com
This is great info.  Thank you!

--- On Fri, 1/8/10, Jo Blair <mom...@woh.rr.com> wrote:

From: Jo Blair <mom...@woh.rr.com>
Subject: RE: [cinciceliac] kids test results
To: cinci...@googlegroups.com

SNACKS

Lays STAXX (All flavors)

Ruffles Regular potato chips

Dorito Rollitos

Mission Tortilla chips

Orville Redenbacher’s popcorn

Jiffy Pop Popcorn

Crunch ‘n Munch

JellO Brand gelatin and

pudding snacks

Del Monte Pudding cups

French’s Potato Sticks

Frigo/Kraft/Sargento cheese sticks

Oreida French Fries

Old Wisconsin Beef sticks

Hormel Pepperoni

pretzels, crackers, cupcakes)

FRUIT SNACKS

Kroger’s Fruit snacks

Nabisco Fruit snackså

General Mills Fruit snacks

Fruit to Go (SunRype)

Trolli Gummi Candies—all

Fruit by the foot

Sunkist Fruit Rolls

Sun-Maid Raisons

Welches Fruit snacks

JUICE BOXES

Mott’s — all

Minute Maid — all

Del Monte

Juicy Juice — all

Capri Sun

Hawaiian Punch

KoolAid — all

Northland 100% Juice

Welches juices — all

Libby’s — all

DRINKS

Coke, Sprite, Minute Maid

Snapple — all

Crystal Lite

Swiss Miss

ICE CREAM NOVELTIES

Flintstones pushups

Edy’s/Dreyers Fruit Bars

Koolaid Freezer pops

Nestle’s Popsicles

Starburst fruit Juice bars

Good Humor Popsicles

PhillySwirl frozen stix

Fla-Vor-Ice

ICE CREAM

Baskin Robbins

Edy’s Grand

Edy’s Homemade

Ben&Jerry’s

Blue Bell

Blue Bunny

TCBY

Cool Whip

Dairy Queen

Dreyers

CHOCOLATE CANDY

(except crispie or cookie)

M&M’s (except crispie)

Nestle Butterfinger BB’s

Nestle Chunky

Raisinets

3 Musketteer’s

Baby Ruth

Butterfinger

Snickers

Clark Bars

Dove

York Peppermint Patties

CHEWY CANDY

Flavor Rolls—all

Jellybelly jellybeans

Tootsie Rolls—all

Starburst Fruit Chews

Jolly Rancher Fruit Chews

Double Bubble — all

Trident gum — all

Skittles

Milk Duds

Airheads

Big League Chewing Gum

Bubble Yum — all

Chicklets

Dentyne Gum — all

Haribo Gummies

Sharie’s Candies Gummies

Trolli Gummies

Gold Medal Cotton Candy

HARD CANDY & SUCKERS

Charms—all

Farley’s hard candies

SweeTarts

Spree

BitOHoney

Spangler DumDum Pops

Tootsie Pops

Extreme Pops

LifeSaver’s—all

Topps Ring Pops

Pez

Smarties

Haviland (Necco) Candy Stix

SEASONAL CANDY

Christmas

Spangler candy canes

Valentine

Spangler DumDum pops

Spangler picture pops

Necco Conversation Hearts

Easter

Spangler picture pops

JustBorn Marshmellow peeps

JustBorn Jelly Beans

Halloween

Farley’s candy corn

Spangler picture pops

Jellybelly candy corn

SCHOOL PRODUCTS

CRAYOLA (800-CRAYOLA)

ELMER

Stick; Glitter; Glitter Shakers

PALMER PAINT (800-521-1383)

ROSS PRODUCTS (888-435-6377)

School Glue

LAKESHORE Learning Materials

CENTER ENTERPRISES

PRANG Washable Paint

My child, ___________ ______________

____________’s backpack.

gluten

wheat

barley

rye

enriched white flour

all purpose flour

cookies

bread

buns

cake/cupcakes

crackers

cereal

doughnuts

poptarts

pretzels

pancakes

waffles

pie

pasta noodles

spaghetti

Chocolate with

Crispies or Cookies

Twizzlers

ice cream (verify)

cheese sauces

processed cheese

hot dogs (fillers)

gravy

soup

margarine

malt vinegar

vegetable oil (verify)

spices (verify)

flavorings

food coloring (verify)

MSG

salad dressings

mayonnaise

Oreida Tator Tots

pickles (verify)

Suntan lotion (verify)

hand lotion (verify)

Soaps with Wheat

Germ oil

Toothpaste (verify)

Papier Maché

PlayDoh

FingerPaint

Straw

SAFE FOODS

Anything provided from home

(gluten-free baked goods/cookies/

cakes/bread/pizza/pastas)

milk

juice (see list provided)

Fresh fruit

Fresh vegies

Corn flour/Cornstarch

Rice flour

Potato flour

popcorn (see list provided)

Jello

Jello Pudding

Cheese provided from home

Coke and Pepsi products

Butter

Apple cider vinegar

jams and jellies

peanut butter

meat

potatoes

Oreida French Fries

Cascadien Farms Spud Puppies

Heinz Catchup

Vlassic Pickles

eggs

Potato chips – Lays/Ruffles plain

Doritos Rollitos

Lays StaX chips

Nestle IceScreamer Popsicles

CANDY (see list provided)

McDonald’s Cheeseburger Happy

UNSAFE FOODS

bakery/art project)

Jennifer Jones

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Jan 8, 2010, 5:01:27 PM1/8/10
to cinci...@googlegroups.com
really, the glue on envelopes is not GF? I have never heard that before. My daughter uses envelopes quite often, but she usually is not very sensitive to very small amts of gluten. I'll have to tell her to start using a sponge. Thanks!

--- On Fri, 1/8/10, Anne Rolfert <arol...@yahoo.com> wrote:

Nora Mollmann

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Jan 8, 2010, 5:24:10 PM1/8/10
to cinci...@googlegroups.com
Gluten in envelope glue is an old wives' tale. Please read the following from the magazine Gluten Free Living:
 
 
I really like this magazine. It's very informative and not sensational about it.
 
 
Nora

Jillian Perkins

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Jan 8, 2010, 6:19:13 PM1/8/10
to Cincinnati Celiac Support Group
As others have posted, Sami's is NOT gluten free. I was very sick
after eating it once. Most things that are "made in a facility that
also processes wheat" fine for me, but this company has a serious
cross contamination issue or outright false ingredient list.

I just had some really good hamburger buns when I was down in Texas
and am going to see if the Hyde Park Biggs or Whole Foods will order
some of this brand for me. I was worried that it was not really GF as
the buns were soft and didn't crumble at all, but they are. The brand
is O'Dough's and is made in Canada.
http://www.odoughs.com/index.php

-Jill

kk...@fuse.net

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Jan 8, 2010, 6:36:40 PM1/8/10
to cinci...@googlegroups.com, Jillian Perkins
Thanks Jill. For info on O'dough's

lorih...@aol.com

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Jan 8, 2010, 11:35:41 PM1/8/10
to cinci...@googlegroups.com
I did not realize a blood test was conclusive.  I was under the impression that an endoscope and/or genetic testing was the only way to conclusively tell.
 
What have people done with regards to their children since an endoscope can be invasive.

Anne Rolfert

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Jan 9, 2010, 12:20:17 AM1/9/10
to cinci...@googlegroups.com
Since I had a positive test and I was suspicious of my kids having it, their doctor said they could do a blood test called a celiac serology test to see if there was indication of it- that test,  combined with the "symptoms or characteristcs" we could see evident, as well as family history, were the combined reason they said my daughter tested positive, so it wasn't just the blood test alone. We are off to see the nutritionist at Children's hospital in two weeks, and I think if they tell me they want to do the endoscopic exam I am going to refuse it, because to me, really, what difference does it make at this point if blood test results and her symptoms indicated it and the treatment is the same.  Now, my son on the other hand, did not test positive to the celiac serology test, but I still feel like there is a possibility he has it-  however, I am still not going to pursue the endoscopic test, but think that I might just try the gluten free diet and see if his symptoms go away, knowing about the risk of false negatives on the blood test.   I really don't want to put either of them through the more invasive exam.  I am not sure what all was included in the Celiac Serology test- i am hoping to find out more info. when we meet with the nutritionist. 

--- On Fri, 1/8/10, lorih...@aol.com <lorih...@aol.com> wrote:

From: lorih...@aol.com <lorih...@aol.com>
Subject: Re: [cinciceliac] kids test results
To: cinci...@googlegroups.com

Wilma Smith

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Jan 9, 2010, 9:23:27 AM1/9/10
to cinci...@googlegroups.com

There are still many people who discontinue foods to find what they are allergic too and then discontinue eating those foods permanently; also, the past generations (like my father) did the same thing.   I fail to see why people can’t do that today; yes it is good to have the endoscopic exam if you seem to continue having problems after eating gluten free for three months, just in case there is something else wrong with the gut.   In my case I had the blood test(to start because a family member had the disease), then an endoscopic exam to see if there was something else going on because my symptoms were not the typical Celiac Disease Symptoms and I was having lots and lots of trouble(and the dr. did find reflux, and a couple other things going on), then I was told to go on the diet(to treat the Celiac Disease) and the other problems were treated also for six months, and then another endoscopic exam to see if the gut was healing; it was!!   Then the dr. recommended a blood test once a year to make sure that I was staying on the diet because I continue to have problems.  My blood tests are always in the normal range but not the lowest number which the dr. says is because I am getting traces of gluten in my diet.    My point is it takes more than one test sometimes and sometimes a person does fine if they just change their eating habits.   I think each person has to decide for himself/herself what the best route might be for his/her stomach.   You almost have to see a dr. that you trust and who seems to understand Celiac Disease.   I really don’t think there is any dr. who understands completely unless he has the disease himself/herself.   I am waiting to meet the dr. who has Celiac Disease to come forth and write a book on the disease!!!   You would think there would be at least one in this country since there are so many people with the disease. 

Nicole Maher

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Jan 9, 2010, 9:55:02 AM1/9/10
to cinci...@googlegroups.com
Gastroenterologists specializing in CD still see the scope as the only definitive diagnosis. It is the only way to see that damage is being done to the villi and the cd is truly present.  I personally would not put my child on a gluten free diet for life w/out it, as the diet affects living life to such a great degree. We have had cd in our lives for 7+ years now and while it is MUCH easier for us today it still affects every eating decision we make. 

Obr...@aol.com

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Jan 9, 2010, 10:05:21 AM1/9/10
to cinci...@googlegroups.com
Totally disagree. As Dr. Fassano has said the blood test is definitive. In the US  the MDs like to do the endo but it is not necessary when the blood test is positive and as the results will be know when the client is put on the GF diet.
I would never put a child through an endoscopy that is not necessary not only because of the anesthesia but also because there are so many endos that can still biopsy good tissue and then the client is told they do not have CD when they actually do.

Erin Linduff

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Jan 9, 2010, 10:58:53 AM1/9/10
to cinci...@googlegroups.com

Good to know.  I have seen it in print several times that envelopes can contain gluten.  It is really hard to know what to trust.

 


From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com] On Behalf Of Nora Mollmann
Sent: Friday, January 08, 2010 5:24 PM
To: cinci...@googlegroups.com
Subject: Re: [cinciceliac] kids test results

 

Gluten in envelope glue is an old wives' tale. Please read the following from the magazine Gluten Free Living:

Wilma Smith

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Jan 9, 2010, 12:12:47 PM1/9/10
to cinci...@googlegroups.com

Well, if you put your child on the diet and the symptoms all disappear that is a pretty good clue that gluten is the problem.   You could put him/her back on gluten and see how they do and that would be even more proof.    I hate going through any test especially the scope, but like you say it will tell the dr. if the stomach is damaged from gluten especially the area where he takes the tissue from.    There is so much more to learn about this disease; I hope lots of money will go into research on it.

carrie smith

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Jan 9, 2010, 2:00:34 PM1/9/10
to cinci...@googlegroups.com

My daughter was diagnosed through blood test and endoscope prior to her 3rd birthday.  My son began presenting similar symptoms before his second birthday.  His first blood test (a little after 1 year old) came back normal.  About 9 months later, it was extremely high.  Based on his symptoms, hisblood work, and family history we opted out of putting him under anesthesia and going through a scope.

 


From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com] On Behalf Of Anne Rolfert


Sent: Saturday, January 09, 2010 12:20 AM
To: cinci...@googlegroups.com

Subject: Re: [cinciceliac] kids test results

 

Since I had a positive test and I was suspicious of my kids having it, their doctor said they could do a blood test called a celiac serology test to see if there was indication of it- that test,  combined with the "symptoms or characteristcs" we could see evident, as well as family history, were the combined reason they said my daughter tested positive, so it wasn't just the blood test alone. We are off to see the nutritionist at Children's hospital in two weeks, and I think if they tell me they want to do the endoscopic exam I am going to refuse it, because to me, really, what difference does it make at this point if blood test results and her symptoms indicated it and the treatment is the same.  Now, my son on the other hand, did not test positive to the celiac serology test, but I still feel like there is a possibility he has it-  however, I am still not going to pursue the endoscopic test, but think that I might just try the gluten free diet and see if his symptoms go away, knowing about the risk of false negatives on the blood test.   I really don't want to put either of them through the more invasive exam.  I am not sure what all was included in the Celiac Serology test- i am hoping to find out more info. when we meet with the nutritionist. 

--- On Fri, 1/8/10, lorih...@aol.com <lorih...@aol.com> wrote:


From: lorih...@aol.com <lorih...@aol.com>
Subject: Re: [cinciceliac] kids test results
To: cinci...@googlegroups.com
Date: Friday, January 8, 2010, 11:35 PM

I did not realize a blood test was conclusive.  I was under the impression that an endoscope and/or genetic testing was the only way to conclusively tell.

 

What have people done with regards to their children since an endoscope can be invasive.

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Michelle Harrison

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Jan 10, 2010, 9:36:07 AM1/10/10
to cinci...@googlegroups.com

I think the doctors feel the blood test is pretty accurate, but it is still not conclusive without the biopsy.  Our GI doctor said it was the only way to verify the CD was with the biopsy so we had it done when my son was almost 4.  It was definite and they sent us home that day telling us to change his diet immediately.  We met with the nutritionist 10 days later which was not very helpful.  They gave us the CSA book and some general dated info.  I hope there is better info now.  As someone else said it would be nice if there was a doctor and nutritionist that really understood CD to go to. 

 

From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com] On Behalf Of lorih...@aol.com
Sent: Friday, January 08, 2010 11:36 PM
To: cinci...@googlegroups.com
Subject: Re: [cinciceliac] kids test results

 

I did not realize a blood test was conclusive.  I was under the impression that an endoscope and/or genetic testing was the only way to conclusively tell.

Rob Hans

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Jan 10, 2010, 10:41:11 AM1/10/10
to cinci...@googlegroups.com

I got my blood test results 2 days before my endoscopy was scheduled.  My blood work came back positive for celiac , but my biopsy came back negative. I believe with the blood work they are looking to see if a particular antibody is present in your blood. My GI doctor said to go with the blood test results.  I have been gluten free for almost two years now, and I can definitely tell a difference in my energy level (low iron was what prompted my testing).  I have seen copies of my lab work from right before I was diagnosed and 1 year after I was diagnosed, and all of my vitamin/mineral levels have definitely gone up.  I think doctors’ opinions are very subjective on this issue, as to what they think is a conclusive diagnosis. 

-----Original Message-----
From: cinci...@googlegroups.com [mailto:cinci...@googlegroups.com]On Behalf Of Michelle Harrison
Sent: Sunday, January 10, 2010 9:36 AM
To: cinci...@googlegroups.com

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