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Hi , well sounds to me like you've made the right first

move.......getting rid of that rheumatologist, he sounds like a totally

arrogant pig of a doctor. I would have turned on him and said.........Don't

you have a clue, of course my not sleeping is your concern because it's all

related, everything about my everyday health effects the RA. I don't put up

well with arrogance. Maybe there is someone else on this board who can

recommend a rheumy in your area that is good.

Out side of medication there are alot of things we can do to improve our RA

and our overall health, physically and mentally.

I would be happy to email off board with you, or anyone about some of the

things I've found beneficial, many don't cost anything, just time yet the

overall benefit is amazing.

Dorey

www.LivingWithRheumatoidArthritis.com

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

From: " " <babyhaleysmom@...>

<Rheumatoid Arthritis >

Sent: Wednesday, October 05, 2005 10:58 AM

Subject: New to the board

> Hello all. I was diagnosed with RA 12/04 at 31. The symptoms started

> when my mom was diagnosed with cancer in September 2004, she passed

> away a month later on her birthday, October 20. I was having a lot of

> joint pain and swelling, especially in my wrists and shoulders. The

> doctors would give me shots and send me home with Ibuprofen, assuming

> I had hurt myself lifting Mom or it was the trauma of her passing

> making me feel bad. When it got to where I could hardly hold a

> toothbrush or brush my hair in early December, they tested for RA. I

> was notified a week before Christmas that it was positive.

>

> My rheumy put me on Salsalate. He couldn't put me on MTX or any of

> the biologics because my fiance and I knew we wanted a child. (I have

> a 5 year old from a previous marriage.) Finding out I had RA made us

> want to start a family immediately so we got married in March and we

> immediately got pregnant. Unfortunately we suffered a miscarriage at

> 6 weeks. My rheumy has since changed me to Sulfasalazine-6 a day and

> Diclofenac after my symptoms started getting worse.

>

> I appreciate the previous posts about getting pregnant. We are at a

> stand still on having a baby. I want a child so badly with my husband

> and my little girl prays for a brother or sister every night. After

> the miscarriage, we tried so hard with no luck. My OB said that he's

> not sure we can get pregnant again due to other gyne issues and that

> I need some testing and most likely fertility drugs. So we stopped

> trying in August.

>

> My rheumy said that my RA is not full blown, which terrifies me. I

> have already had to change so many things in my life, mostly my

> independence. I have changed my career. I went back to school and got

> my Master's in teaching when I was pregnant and finished when Haley

> was 2. Now I can't teach anymore because I can't be on my feet that

> much a day, nor do I have the energy for a classroom of young

> children. So I've taken about a 50% cut in pay to work an office job

> where I can sit.

>

> I guess I'm wondering, at 32, if I can even handle having a child. I

> have a wonderful husband, who I know will help me take care of a

> baby. But there are many days that I just have to lie down when I get

> home. I want to be able to be active and do things with a child.

> After having Haley, I realize that my purpose in life is to be a mom-

> and I cherish every minute of it. My husband says that he will stand

> by any decision I make. That he deeply wants a child, but he wants to

> do what's best for me and my health. We're both stradling the fence

> on this one.

>

> To beat it all, when I saw my Rheumy two weeks ago, he was very

> sarcastic and patronizing. When I asked him about my legs swelling,

> he said it was a woman thing and he couldn't do anything for me.

> Seeing as how my legs have never swelled until I was diagnosed, I

> don't think it's a woman thing. When I told him about my sleep

> troubles, he interrupted me and said that he only deals with

> Rheumatology issues, that I need to see my family doctor. Then when I

> was checking out he looked at the nurse and said, maybe you two and

> go to the doctor together--she isn't sleeping well either. I was

> flabbergasted! Needless to say, I am looking for another Rheumy now.

>

> I'm sorry for the long post. I don't have anyone to talk to that

> truly understands the pain and loss you feel with this disease. I

> feel bad for complaining as I'm not full blown like most of you! How

> do you stay positive? I get sad and angry about losing my career, not

> being able to be active, hurting everyday, staying sick (I had

> walking pheumonia 4 times last year, not to mention other illnesses).

> Should I see a therapist, get on anti-depressants? I'm just having

> trouble dealing with it all, plus losing my mom, the miscarriage, and

> my grandmother just passed away the night of my birthday in August.

> Any thoughts or ideas would be greatly appreciated. :)

>

> Thank you so much for listening--this board is a wonderful thing.

>

> in TN

>

>

>

>

>

>

>

>

>

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From: "" <babyhaleysmom@...><Rheumatoid Arthritis >Sent: Wednesday, October 05, 2005 10:58 AMSubject: New to the board> do you stay positive? I get sad and angry about losing my career, not> being able to be active, hurting everyday, staying sick (I had> walking pheumonia 4 times last year, not to mention other illnesses).> Should I see a therapist, get on anti-depressants? I'm just having> trouble dealing with it all, plus losing my mom, the miscarriage, and> my grandmother just passed away the night of my birthday in August.> Any thoughts or ideas would be greatly appreciated. :)>> Thank you so much for listening--this board is a wonderful thing.>> in TN>

Hello ,

Sounds like a new rheumy is a good ideal as sounds his bedside manner is for the birds ,,, but really I suffer with all the problems as you and my family doctor is the one that treats them my rheumy will give my shots but not much if anything for pain and nothing for sleep but my family dr has allways been so helpfull to me I would really make arangements to see mine if i was you for this its allways easier to get in there on short notice in my case but thats just my two cents .hope you do feel better soon and go for the child god will provide a way .

john>>>>>>>>

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  • 4 months later...

In a message dated 2/18/2006 10:51:34 PM Eastern Standard Time, JetergirlBP@... writes:

We just went to my 5 month old daughter's craniofacial dr and we are

going this Tuesday to have her casted for a DOC band here in CT. I am

concerned that she will not adjust well at all to it due to its size

and being uncomfortable. She is a stubborn baby and I am worried that

she wont do well....any advice or am I worrying for nothing?

Sleep has always been an issue for her and she is finally sleeping thru

the night and I am afraid this will mess things up for us!

thanks

Becky

Hi! Welcome to the group!. My son got his helmet on the 10th and has been awesome in it. He is 9 months and still doesnt sleep through the night but since we got the band he slept 2 days through the night woohoo lol. We are having a very postive experience with it. I am glad I didnt get it because I thought my son would be uncomfortable. I think he likes it and looks for when it is off. He is so careless with it on lol

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In a message dated 2/18/2006 10:51:34 PM Eastern Standard Time, JetergirlBP@... writes:

We just went to my 5 month old daughter's craniofacial dr and we are

going this Tuesday to have her casted for a DOC band here in CT. I am

concerned that she will not adjust well at all to it due to its size

and being uncomfortable. She is a stubborn baby and I am worried that

she wont do well....any advice or am I worrying for nothing?

Sleep has always been an issue for her and she is finally sleeping thru

the night and I am afraid this will mess things up for us!

thanks

Becky

Hi! Welcome to the group!. My son got his helmet on the 10th and has been awesome in it. He is 9 months and still doesnt sleep through the night but since we got the band he slept 2 days through the night woohoo lol. We are having a very postive experience with it. I am glad I didnt get it because I thought my son would be uncomfortable. I think he likes it and looks for when it is off. He is so careless with it on lol

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Becky I just wrote we got our DOCband Wed so 3 days ago! The size is

really not as big as I thought and it is light about 6 ounces. Unless

your baby has a muscle issue she'll be fine with the size.

Sleep has been fine for us. There doesn't seem to be any consistency I

read about babies that sleep fine you didn't before and babies that did

sleep fine before and then don't with the band. So I don't think

there's anything you can really do about that. Just stick to your

normal routine I'd say. I do the 1 hour break close to bedtime and

bath and all that and it works well for us. I wouldn't worry too much

about it until it happens and it may not happen. You could be one of

the lucky ones that the baby likes the roundness so that she can roll

on her head more easily. That's great you're doing it early. I wanted

to get ours at 5 months but lost 6+ weeks with usless insurance issues.

We go to Cranial Tech to but in Paramus however the person who takes

care of my son is from the Conn. office .

Good luck!

Sherry

Chase (6 months)

tort.

DOCband 2/15

--- In Plagiocephaly , " jetergirlbp " <JetergirlBP@...>

wrote:

>

> We just went to my 5 month old daughter's craniofacial dr and we are

> going this Tuesday to have her casted for a DOC band here in CT. I

am

> concerned that she will not adjust well at all to it due to its size

> and being uncomfortable. She is a stubborn baby and I am worried

that

> she wont do well....any advice or am I worrying for nothing?

>

> Sleep has always been an issue for her and she is finally sleeping

thru

> the night and I am afraid this will mess things up for us!

>

> thanks

> Becky

>

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Becky I just wrote we got our DOCband Wed so 3 days ago! The size is

really not as big as I thought and it is light about 6 ounces. Unless

your baby has a muscle issue she'll be fine with the size.

Sleep has been fine for us. There doesn't seem to be any consistency I

read about babies that sleep fine you didn't before and babies that did

sleep fine before and then don't with the band. So I don't think

there's anything you can really do about that. Just stick to your

normal routine I'd say. I do the 1 hour break close to bedtime and

bath and all that and it works well for us. I wouldn't worry too much

about it until it happens and it may not happen. You could be one of

the lucky ones that the baby likes the roundness so that she can roll

on her head more easily. That's great you're doing it early. I wanted

to get ours at 5 months but lost 6+ weeks with usless insurance issues.

We go to Cranial Tech to but in Paramus however the person who takes

care of my son is from the Conn. office .

Good luck!

Sherry

Chase (6 months)

tort.

DOCband 2/15

--- In Plagiocephaly , " jetergirlbp " <JetergirlBP@...>

wrote:

>

> We just went to my 5 month old daughter's craniofacial dr and we are

> going this Tuesday to have her casted for a DOC band here in CT. I

am

> concerned that she will not adjust well at all to it due to its size

> and being uncomfortable. She is a stubborn baby and I am worried

that

> she wont do well....any advice or am I worrying for nothing?

>

> Sleep has always been an issue for her and she is finally sleeping

thru

> the night and I am afraid this will mess things up for us!

>

> thanks

> Becky

>

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Becky,

A DOC Band only weighs 6 oz max. I'm pretty sure the clothes are

heavier!

I was amazed that both of my kids never cared about their bands. They

never even swatted at them after fitting!

Good luck!

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

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Becky,

A DOC Band only weighs 6 oz max. I'm pretty sure the clothes are

heavier!

I was amazed that both of my kids never cared about their bands. They

never even swatted at them after fitting!

Good luck!

Mom to Dane (4 yo) and Cece (13 mo) DOC Grads

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Becky,

Most babies adjust quickly to the bands and the younger the faster in

most cases. My son was 5 months old when he got his first band and

slept normal the first night. Don't worry until you know you have

too,lol. I know this can be a little scary, but it will be ok.

CAROLG

--- In Plagiocephaly , " jetergirlbp " <JetergirlBP@...>

wrote:

>

> We just went to my 5 month old daughter's craniofacial dr and we

are

> going this Tuesday to have her casted for a DOC band here in CT. I

am

> concerned that she will not adjust well at all to it due to its

size

> and being uncomfortable. She is a stubborn baby and I am worried

that

> she wont do well....any advice or am I worrying for nothing?

>

> Sleep has always been an issue for her and she is finally sleeping

thru

> the night and I am afraid this will mess things up for us!

>

> thanks

> Becky

>

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Becky,

Most babies adjust quickly to the bands and the younger the faster in

most cases. My son was 5 months old when he got his first band and

slept normal the first night. Don't worry until you know you have

too,lol. I know this can be a little scary, but it will be ok.

CAROLG

--- In Plagiocephaly , " jetergirlbp " <JetergirlBP@...>

wrote:

>

> We just went to my 5 month old daughter's craniofacial dr and we

are

> going this Tuesday to have her casted for a DOC band here in CT. I

am

> concerned that she will not adjust well at all to it due to its

size

> and being uncomfortable. She is a stubborn baby and I am worried

that

> she wont do well....any advice or am I worrying for nothing?

>

> Sleep has always been an issue for her and she is finally sleeping

thru

> the night and I am afraid this will mess things up for us!

>

> thanks

> Becky

>

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  • 8 months later...

I know we asked the last time you posted, but it would make things

alot easier if you let us know what state you are in. There may be a

doctor closeby that deals with this issue. How long after you

started living in the basement did your symptoms first start? Did

they disminish somewhat after leaving that room, are you

experiencing any type of reaction in any other part of the campus?

Normally a low white blood counts signals an infection.

Sharon C.

--- In , " blazes2003 " <blazes2003@...>

wrote:

>

> Hello all,

>

> I posted a couple weeks back. I am new to this board, and am

looking

> for some advice/help. I am 21 years old and was exposed to some

sort

> of mold when forced to live in a basement that had been converted

into

> a dorm my freshman year in college. Since then, I have presented

with

> the symptoms of mono (fatigue, swollen lymph nodes, decreased white

> counts...etc), arthritis, hair loss, and severe stomach pain. I

> recently was referred to an internist at one of the predominant

> hospitals in the northeast, who ran multiple blood tests, one of

which

> came back positive (ANA). I thought that this information would

lead

> to some diagnosis, but he would like to " monitor any changes in my

> condition between now(September) and December " . I am just

wondering if

> anyone has insight into my situation, or thoughts on how this ties

to

> the mold exposure or who I should see to confirm this

>

> THANKS and GOD BLESS

>

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If you were my daughter I would be going crazy. Actually I have a daughter

who is 22 and has recently moved into an apt. this yr. She was in the dorms for

3 yrs. and always had sinus problems. I had her take Dr. Shoemaker's VCS

test on-line and she tested negative. She tested negative and hasn't had any

problems, so far, while in the apartment.

All the symptoms you mention sound like you have had an exposure but I'm not

a Dr. so I can't say for sure. I was a teacher and had the fatigue,

headaches, arthritis, intestinal problems, etc. I never lost hair or had swollen

lymph nodes but one of the other teachers did.

Go to _www.chronicneurotoxins.com_ (http://www.chronicneurotoxins.com) and

take the VCS test. It only costs $8.95 and will give you immediate results.

Dr. Shoemaker can also put you in and out of the building, while on and off

medication to get proof what is making you sick. He is in land just below

Salisbury which is about a 2 1/2 hr. drive from Wilmington, DE.

You can e-mail me directly if you want.

Sue

Hello all,

I posted a couple weeks back. I am new to this board, and am looking

for some advice/help. I am 21 years old and was exposed to some sort

of mold when forced to live in a basement that had been converted into

a dorm my freshman year in college. Since then, I have presented with

the symptoms of mono (fatigue, swollen lymph nodes, decreased white

counts...etc)counts...etc)<WBR>, arthritis, hair loss, and severe s

recently was referred to an internist at one of the predominant

hospitals in the northeast, who ran multiple blood tests, one of which

came back positive (ANA). I thought that this information would lead

to some diagnosis, but he would like to " monitor any changes in my

condition between now(September) and December " . I am just wondering if

anyone has insight into my situation, or thoughts on how this ties to

the mold exposure or who I should see to confirm this

THANKS and GOD BLESS

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I was mistaken about the white blood count. What I should have said

was a high blood count normally means infection. Sorrry about that,

I hate brain fog days.....lol

Sharon C.

> >

> > Hello all,

> >

> > I posted a couple weeks back. I am new to this board, and am

> looking

> > for some advice/help. I am 21 years old and was exposed to some

> sort

> > of mold when forced to live in a basement that had been

converted

> into

> > a dorm my freshman year in college. Since then, I have presented

> with

> > the symptoms of mono (fatigue, swollen lymph nodes, decreased

white

> > counts...etc), arthritis, hair loss, and severe stomach pain. I

> > recently was referred to an internist at one of the predominant

> > hospitals in the northeast, who ran multiple blood tests, one of

> which

> > came back positive (ANA). I thought that this information would

> lead

> > to some diagnosis, but he would like to " monitor any changes in

my

> > condition between now(September) and December " . I am just

> wondering if

> > anyone has insight into my situation, or thoughts on how this

ties

> to

> > the mold exposure or who I should see to confirm this

> >

> > THANKS and GOD BLESS

> >

>

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If the ANA, on your blood test, was positive, you have to check out

the possibility of " Lupus " . There are many different degrees of

Lupus, so if you " google " it, don't panic when they describe

the " worst case scenario " . A LOW white cell blood count, coupled

with a HIGH " SED Rate " , could be another tip-off for your doctor to

look into the possibility of Lupus. I could be completely wrong.

Remember, we are not doctors, on this board, just caring friends.

> > >

> > > Hello all,

> > >

> > > I posted a couple weeks back. I am new to this board, and am

> > looking

> > > for some advice/help. I am 21 years old and was exposed to

some

> > sort

> > > of mold when forced to live in a basement that had been

> converted

> > into

> > > a dorm my freshman year in college. Since then, I have

presented

> > with

> > > the symptoms of mono (fatigue, swollen lymph nodes, decreased

> white

> > > counts...etc), arthritis, hair loss, and severe stomach pain. I

> > > recently was referred to an internist at one of the predominant

> > > hospitals in the northeast, who ran multiple blood tests, one

of

> > which

> > > came back positive (ANA). I thought that this information

would

> > lead

> > > to some diagnosis, but he would like to " monitor any changes

in

> my

> > > condition between now(September) and December " . I am just

> > wondering if

> > > anyone has insight into my situation, or thoughts on how this

> ties

> > to

> > > the mold exposure or who I should see to confirm this

> > >

> > > THANKS and GOD BLESS

> > >

> >

>

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  • 4 months later...
Guest guest

Hello all, my husband has crohn's and all info on LDNwhich can convince his doctor to prescribe it would be appreciated!thanks in advance all the best!gerka [low dose naltrexone] new to the board

Hi-

I am an MS patient & interested in learing all I can about LDN.

Can you send me the welcome package as well?

Thanks-

Sucker-punch spam with award-winning protection. Try the free Beta.

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  • 3 months later...
Guest guest

Hello all,

I am a newly diagnosed celiac in Hill and I'm really looking forward to

getting to

know the members on this board and benefitting from your advice and experiences!

I'm , I work as a teacher's aide in first grade, and I have three kids,

, 10,

Molly, 8 and 5.

We're enjoying our summer vacation and I'm trying to figure out what to put in

my mouth

that won't make me sick. :)

Thanks for having me!

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Guest guest

Welcome to the group!

-Joe

On 6/26/07, <kimberlymp1@...> wrote:

> Hello all,

>

> I am a newly diagnosed celiac in Hill and I'm really looking forward

to getting to

> know the members on this board and benefitting from your advice and

experiences!

>

> I'm , I work as a teacher's aide in first grade, and I have three

kids, , 10,

> Molly, 8 and 5.

>

> We're enjoying our summer vacation and I'm trying to figure out what to put in

my mouth

> that won't make me sick. :)

>

> Thanks for having me!

>

>

>

>

>

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Guest guest

Thanks so much! And now my first of many questions...is tapioca starch and

tapioca flour

the same thing? I have a recipe for some muffins, which calls for tapioca flour,

but I could

only find the starch (though I'm going to Whole Foods tomorrow)

Thanks!

kimberly

> > Hello all,

> >

> > I am a newly diagnosed celiac in Hill and I'm really looking forward

to getting

to

> > know the members on this board and benefitting from your advice and

experiences!

> >

> > I'm , I work as a teacher's aide in first grade, and I have three

kids, ,

10,

> > Molly, 8 and 5.

> >

> > We're enjoying our summer vacation and I'm trying to figure out what to put

in my

mouth

> > that won't make me sick. :)

> >

> > Thanks for having me!

> >

> >

> >

> >

> >

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Guest guest

Not sure if they're the same thing, but you can definitely get tapioca flour at Whole Foods (it's made by Bob's Red Mill). If for some reason it isn't at whole foods, you can also buy it from amazon. I've also had a lot of luck getting tapioca flour from a local asian grocery store (I live in foster city) called Marina Market at a much cheaper price. p.s. All the sites I looked at after googling " tapioca starch vs tapioca flour " suggest the starch and flour are the same thing, so you're probably safe with tapioca starch. Good luck with the recipe.

On 6/26/07, <kimberlymp1@...

> wrote:

Thanks so much! And now my first of many questions...is tapioca starch and tapioca flour

the same thing? I have a recipe for some muffins, which calls for tapioca flour, but I could

only find the starch (though I'm going to Whole Foods tomorrow)

Thanks!

kimberly

> > Hello all,

> >

> > I am a newly diagnosed celiac in Hill and I'm really looking forward to getting

to

> > know the members on this board and benefitting from your advice and experiences!

> >

> > I'm , I work as a teacher's aide in first grade, and I have three kids, ,

10,

> > Molly, 8 and 5.

> >

> > We're enjoying our summer vacation and I'm trying to figure out what to put in my

mouth

> > that won't make me sick. :)

> >

> > Thanks for having me!

> >

> >

> >

> >

> >

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Guest guest

Hi ,

Yes, they are the same thing. But, confusingly, Potato starch and

Potato flour are NOT the same thing. :)

Happy shopping!

-

>

> Thanks so much! And now my first of many questions...is tapioca

starch and tapioca flour

> the same thing? I have a recipe for some muffins, which calls for

tapioca flour, but I could

> only find the starch (though I'm going to Whole Foods tomorrow)

> Thanks!

> kimberly

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Guest guest

Thank you! I was at Whole Foods today, scouring the shelves. I thought they were

different

since potato starch/potato flour are different. So I call the guy over and ask,

and he picks

the package of tapioca flour up and reads.. " Tapioca flour, also known as tapioca

starch... "

Geez. At least they don't make you feel too dumb. :)

>

> Hi ,

>

> Tapioca starch and flour are pretty much the same thing. Look at this article:

>

> http://www.foodsubs.com/ThickenStarch.html

>

> I hope this helps with you question.

>

> Mark Morley

>

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Guest guest

Thanks ! I got it. The Los Gatos Whole Foods definitely doesn't have as

much gf as

the one, though..

kimberly

> Not sure if they're the same thing, but you can definitely get tapioca flour

> at Whole Foods (it's made by Bob's Red Mill). If for some reason it isn't

> at whole foods, you can also buy it from amazon. I've also had a lot of

> luck getting tapioca flour from a local asian grocery store (I live in

> foster city) called Marina Market at a much cheaper price.

>

>

>

> > > > http://sanbeiji.com/

> > >

> >

> >

> >

>

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Guest guest

yes, that was confusing! Very odd!

kimberly

> >

> > Thanks so much! And now my first of many questions...is tapioca

> starch and tapioca flour

> > the same thing? I have a recipe for some muffins, which calls for

> tapioca flour, but I could

> > only find the starch (though I'm going to Whole Foods tomorrow)

> > Thanks!

> > kimberly

>

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Guest guest

I have a box in my kitchen that says "Potato Starch Flour". <kimberlymp1@...> wrote: Thank you! I was at Whole Foods today, scouring the shelves. I thought they were different since potato starch/potato flour are different. So I call the guy over and ask, and he picks the package of tapioca flour up and reads.."Tapioca flour, also known as tapioca starch..." Geez. At least they don't make you feel too dumb. :) > > Hi , > > Tapioca starch and flour are pretty much the same thing. Look at this article: > > http://www.foodsubs.com/ThickenStarch.html > > I hope this helps with you question. > > Mark Morley >

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