Re: INTRO and Question

[Guest guest]

I live near Milwaukee but my in-laws are 40 min. E of Rhinelander and we are up there a lot visiting. I do know dr's up there dont know their butts from a hole in the ground but the more I go to down here I realize it must be a state wide thing. lol

I don't know what to tell you. That sounds crazy to me especially if the blood and endoscope were neg. to just STILL assume that's what it was and call it a day. That's lazy on their part.

I wish I had some advice but I'm about as confused as you are so I'll just say good luck and I feel you're pain. My FIL has been trying to find a good dr. up there for 20 yrs.

.. One more question is anyone else out there in Northwest Wisconsin??

[Guest guest]

Welcome to one of the best mailing lists on the whole web. Glad

you're here.

My question to you - You've *REALLY* been able to give up

chocolate for all of Lent?!!!??!!!! You're a far, far stronger

person than I am!!!!

If you can give up chocolate for Lent, you can go GF. Honest.

You'll have to stop baking chocolate GF brownies next Lent, though.

HA HA, only kidding. You only have to do that if you give up

chocolate next Lent, too.

Tell you what... You help me with the No Chocolate in Lent part,

and I'll do what I can to help you with the GF part. Deal? Deal!

OK! Let's go.

First off, blood tests and endoscopies aren't the End All and

Be All of celiac diagnosis. But they're just about the best of

what the docs have to offer.

I can't comment on the Enterolab stuff 'coz I haven't done it and

know next to nothing about it.

But for my own case, my blood work was ambivalent (only one test

high and the rest negative) and my endoscopy was negative. BUT,

the gluten-free diet worked a miracle in my life. I felt well

for the first time in 20 years or so! Amazing. Within days of

the gluten free diet I was singing its praises. This happened

despite the fact that the GI doc's office was not willing to say

" celiac " to me. The fact that your doc said " probably celiac "

puts you in a better position than I was in last year!

If you had inflammation in the small intestine, if the GF diet

is working, then say " Huh. Interesting. Gluten causes me big

problems regardless of what the name of the issue is. I think

I'll stay GF and feel well. "

Sorry your tummy is feeling poorly again. I can tell a bug from

a glutening mainly by the pain level. Gluten pain comes on me

very fast, very strong, and nearly makes me pass out. I can't

think straight when that pain hits. I can barely tell you my

name. Getting to a necessary room and having the big D helps.

The big D will be bad, bad, bad. Worse than the big D from a

stomach virus. At least in my case it is. Stomach virus big D

is what it is. Gluten big D is explosive, acid, chunky, and worse.

It's as if nothing gets digested. It's as if a whole meal is

coming right out without much change from when I chewed it. It's

awful. And then for days I'll be feeling miserable: headaches,

belly aches, low appetite, low energy.

I hate getting glutened!!

Any question you have about hidden ingredients and recipes (for

making your own decadent breads or desserts or meals) can probably

be answered here.

By the way, if you're Catholic (which I'm guessing you may be

because of the 'giving up chocolate for Lent' comment), you might

want to join us over at CatholicAndSillyYak. Here we discuss

Communion issues in particular and in depth. Not a highly active

group to overwhelm your mailbox, but helpful and friendly and

focused on a topic germaine to Catholic Silly Yaks.

http://health.groups.yahoo.com/group/CatholicAndSillyYak/

Welcome to the group. Congrats on going GF. Thanks for posting.

Stick around. Keep asking questions.

Esther in RI

but I have a (glutenoid) friend or two in WI, does that count?

>

> Hi everyone. I have been reading every posting on this site for 3

> weeks before I got up the guts to write. I live in rural Northwest

> Wisconsin and I have been told by my GI doc that I have " probable

> celiac's disease " his recommendation was " just go on a gluten free

> diet " . Just go on a gluten fee diet? Like thats just as easy as

> giving up chocolate for lent. Anyway after 1 month of backing off on

> it and going through binges I finally did it. Three weeks GF now.

[Guest guest]

Hey,

I totally feel for you. I went a similar route but it

took longer because I was given a wrong diagnosis.

Doctors are still learning about it, and it ends up

that sometimes we, the ones with it, educate them more

than they educate us. I went thgough 7 years of

literally countless colonoscopies, endscopies, wrong

diagnoses. I forgot what living meant. I even went for

a second opinion. He said " Gee, I dunno what you have

but you don't need to be here because all these tests

are normal. Find another doctor. " I had to ask for

the test for CD from my fertility doc, and it was

positive. 2 GI guys (from Ohio State University no

less), 2 Fertility docs and a GP later.

My sister had it as a child, and went into remission

for several years until she hit her late thirties. She

was retested and although it came back negative for

CD, she still has a GF diet that has taken care of the

issue. Several doctors, some seriously odd tests, and

a gall-bladder later.

She's in Cincinnati. I'm in Columbus. We have and have

had access to really good doctors. And they didn't

seem to know...for me it's been just under 2 years.

For her it's been probably 4 years since diagnosis.

It took a lot of work, tears and anger to get all the

gluten out of my diet--I'm from a French family. Bread

is what my people do. I had gone your route briefly

just to see if it helped but that was before I

realized just how extensive the removal has to be--I

wasn't eating my favorite foods and I was still sick.

I pushed for diagnosis and it helped me come to terms

after so long without answers...but in the end, all I

did was remove gluten from my diet.

So, a long story to get to the simple point: Even

doctors at Gimungous Universities aren't the best

educated about it.

It gets better. It is SO worth it. I feel like I'm

awake for the first time in years. Heh, sometimes I

feel like some kind of convert, telling anyone with

chronic diarrhea and untreatable migraines to go get

tested

Kendra from Ohio

I swore to myself I was just gonna hang out quietly

here.

--- Michele mmb505@...> wrote:

> Hi everyone. I have been reading every posting on

> this site for 3

> weeks before I got up the guts to write. I live in

> rural Northwest

> Wisconsin and I have been told by my GI doc that I

> have " probable

> celiac's disease " his recommendation was " just go on

> a gluten free

> diet " . Just go on a gluten fee diet? Like thats

> just as easy as

> giving up chocolate for lent. Anyway after 1 month

> of backing off on

> it and going through binges I finally did it. Three

> weeks GF now. At

> least I am to the best of my knowledge. Still a

> little shaky on the

> hidden ingredients. It is not fun. I feel cheated

> and angry. I keep

> thinking. Probable celiacs. So how about making it

> official. There

> were no follow up appointments I was just told to go

> home and be GF.

> Heres the question? If enterolab testing can make

> this more

> definitive than How come doctors are not using this

> testing. OR maybe

> they are and My doc is just useless. What's the

> consensus. I Had a

> colonoscopy and Upper GI endoscopy. Everything was

> normal. I only

> showed inflammation in the small intestine. No

> flattened villi if I

> recall. Chrones and other bowel diseases ruled out.

> He took a bunch of

> blood tests don't know what they were but they were

> all negative. Two

> years ago I was on the ATkins diet and was symptom

> free. The dx was

> based on this and the inflammation. Couldnt the

> inflammation be

> caused by something else? I had previous diagnosis

> of IBS and GERD.

> The diet had eliminated my symptoms until 2 days

> ago. Now I have

> diarrhea again. Could be a bug. But cant tell the

> difference. I am

> sooo confused. One more question is anyone else out

> there in Northwest

> Wisconsin??

>

>

>

>

>

It's not just a daydream if you decide to make it your life.

--Train

__________________________________________________

[Guest guest]

I must defend at least one GI from Wisconsin. We live in the very

rural western Upper Peninsula. My children's pediatric GI, Dr.

Brown, is from Wausau. We are able to see him in Minocqua

for office visits. The 3 kids first saw him in May after blood tests

were positive. In June all three had endoscopies done in Wausau. That

was the best hospital experience we have had and my two sons have been

in the hospital a lot. In July and August we went for follow-ups in

Minocqua again. Now they don't have to go back until November.

My husband's Yooper doctors have been just as good. Last November my

husband started seeing an internist in Ironwood because he was tired

all the time and would get winded climbing up to the loader of his log

truck. He was severely anemic and his internist later admitted to

being very scared for him. He started seeing a hematologist along with

the internist. After a month of weekly visits and tests the Ironwood

doc sent him to Marquette to a GI. As we were in the examining room,

the faxed results of his blood tests from the week before came in.

They were positive for antibodies. He set up for an endoscopy

later that day. He diagnosed him with celiac disease. It was such a

relief for me to hear those words. I am a teacher and that fall I had

a student who was displaced because of Hurricane Katrina. His whole

family was gluten free because his sister had celiac disease. I had

many discussions with his mother, , about the diet. I told my

husband at the time of diagnosis that we could handle this, it could

have been something much worse. Little did I know that all three of my

children would also be diagnosed. Back to the doctors. Between the

three doctors, my husband went to at least two appointments a month for

the first six months. His blood is fine now so he was able to drop the

hematologist in May. Now he sees the others every three months. His

internist said that was the first patient he tested for celiac

antibodies. A month before seeing , he saw a patient who had been

diagnosed before in Marquette and then moved to Ironwood. Since 's

diagnosis the Ironwood internist has diagnosed 4 more patients. He

said now the celiac antibodies are the first thing he tests for if

someone comes in with anemia or any gi problems.

Michele, the hardest part of living in such a rural area for me is

shopping for food. I was lucky enough to learn about a natural food

buying club. Through them I am able to order gluten free food and pick

it up once a month in Conover, Wisconsin. You can check at

www.unitedbuyingclubs.com to see if there is a club near you. I also

order from amazon.com when their prices are better than the buying club.

Good luck, and it does get easier as you go.

in the beautiful UP

___

[Guest guest]

, I am 72 years old and it took the doctors 53 years to diagnose me. By that time I had developed many-many side effects of celiac. Believe me the diet was a breeze because I was so sick before the diet with dermatitis herpetiformis, peripheral neuropathy, dizziness and on and on. Since then I have developed glaucoma from the steriods I had to take for the many allergic reactions over the years. Please-please, if the diet makes you feel better don't stray. It's taken me five years to learn how to cook all over again. After the first 2 months my husband insisted that we take the whole household gluten free and that is what really helped. It does get easier and easier and you will make mistakes. My first biscuits were like hockey pucks. But now they taste just fine--even better they don't make me sick. Shirley in San Diego Nordine wrote: I must defend at least one GI from Wisconsin. We live in the very rural western Upper Peninsula. My children's pediatric GI, Dr. Brown, is from Wausau. We are able to see him in Minocqua for office visits. The 3 kids first saw him in May after blood tests were positive. In June all three had endoscopies done in Wausau. That was the best hospital experience we have had and my two sons have been in the hospital a lot. In July and August we went for follow-ups in Minocqua again. Now they don't have

to go back until November.My husband's Yooper doctors have been just as good. Last November my husband started seeing an internist in Ironwood because he was tired all the time and would get winded climbing up to the loader of his log truck. He was severely anemic and his internist later admitted to being very scared for him. He started seeing a hematologist along with the internist. After a month of weekly visits and tests the Ironwood doc sent him to Marquette to a GI. As we were in the examining room, the faxed results of his blood tests from the week before came in. They were positive for antibodies. He set up for an endoscopy later that day. He diagnosed him with celiac disease. It was such a relief for me to hear those words. I am a teacher and that fall I had a student who was displaced because of Hurricane Katrina. His whole family was gluten free because his sister had celiac disease.

I had many discussions with his mother, , about the diet. I told my husband at the time of diagnosis that we could handle this, it could have been something much worse. Little did I know that all three of my children would also be diagnosed. Back to the doctors. Between the three doctors, my husband went to at least two appointments a month for the first six months. His blood is fine now so he was able to drop the hematologist in May. Now he sees the others every three months. His internist said that was the first patient he tested for celiac antibodies. A month before seeing , he saw a patient who had been diagnosed before in Marquette and then moved to Ironwood. Since 's diagnosis the Ironwood internist has diagnosed 4 more patients. He said now the celiac antibodies are the first thing he tests for if someone comes in with anemia or any gi problems. Michele, the hardest part of

living in such a rural area for me is shopping for food. I was lucky enough to learn about a natural food buying club. Through them I am able to order gluten free food and pick it up once a month in Conover, Wisconsin. You can check at www.unitedbuyingclubs.com to see if there is a club near you. I also order from amazon.com when their prices are better than the buying club.Good luck, and it does get easier as you go. in the beautiful UP ___

[Guest guest]

>

> Hi everyone. I have been reading every posting on this site for 3

> weeks before I got up the guts to write. I live in rural Northwest

> Wisconsin and I have been told by my GI doc that I have " probable

> celiac's disease " his recommendation was " just go on a gluten free

> diet " . Just go on a gluten fee diet? Like thats just as easy as

> giving up chocolate for lent. Anyway after 1 month of backing

> off on it and going through binges I finally did it. Three weeks

> GF now. At

> least I am to the best of my knowledge. Still a little shaky on

the

> hidden ingredients. It is not fun. I feel cheated and angry. I

keep

> thinking. Probable celiacs. So how about making it official.

There

> were no follow up appointments I was just told to go home and be

GF.

> Heres the question? If enterolab testing can make this more

> definitive than How come doctors are not using this testing. OR

maybe

> they are and My doc is just useless. What's the consensus. I Had

a

> colonoscopy and Upper GI endoscopy. Everything was normal. I only

> showed inflammation in the small intestine. No flattened villi if

I

> recall. Chrones and other bowel diseases ruled out. He took a bunch

of

> blood tests don't know what they were but they were all negative.

Two

> years ago I was on the ATkins diet and was symptom free. The dx

was

> based on this and the inflammation.

You have a good doctor. Let me explain why.

In Finland they have been following people with probable celiac

disease taking biopsy when the Marsh Grade was low and many

spontaneously converted to CD. There are several aspects to

this disease, particularly for Late Onset (18 to 50, mean 28 years)

symptoms.

This is what they found, for patients that spontaneously converted

when the went back and looked at their biopsies from the first

examinations they found.

1. Elevated Lymphocytes, often double than normal, but still 1/2 to

2/3 that of CD

2. Anti-tTG antibody deposits, even as 3/4 of those surveyed

at the time showed low serum tTG had tTG deposits.

3. Anti-EMA antibodies often did not show up in oldest patients

with chronic diease.

4. The apparance of secondary autoimmune diseases in preclinical

CD were almost as high as those in the clinically confirmed

group.

5. Other phenomena such as anemia, lymphomas, IBD, EG, etc that are

classically associated with CD were apparent.

The problem is not the Doctors so much as the techniques

that are being used to diagnose the disease, and in the US

we lag behind the best approaches in scandinavia. Sometimes

it is good for the doctor simply to use good common sense.

In terms of diarrhea and other stuff. Ideally consistent

bowel activity is desired, but caffiene, amount of sleep

and stress can cause diarrhea.

There are some common things that are overlooked:

Soy sauce - wheat unless gluten free.

Beer - possibly has dangerous gluten (made with barley)

Food pastes, gluten is used as a binder.

Flavored chips, gluten is used as a binder.

Oats - are contaminated with wheat, sometimes badly.

If you go GF for a month or 2 and are quite rigorous about

this, an attempt to resume gluten consumption, if you are

CD or protoCD, should see a marked deterioration of what you

gained and is frequently worse than when you initially went

GF. I don't recommend this because the problem is there

is accumulative damage caused by CD, it ages the gut, in

promotes potentially irreversible food allergies, it promotes

potentially irreversible secondary autoimmune diseases,

and increases the risk of lymphoma. But if you must know,

that is the best thing short of going to Finland with alot

of cash in your pocket. [And even there I don't think

they are catching all 'proto'CD patients, just alot

more than standard clinical biopsies are detecting.

Hey look on the bright side, this disease is over 118 years

since its first documentation in the literature. It is

interesting that during the Finish study two of the patients

in their challenge study drop decided to go GF (not good

for the science, but . . ) it turns out that with a little

information the patient is a better doctor than the doctors

are.

Here's were you need the science, though.

1. Get DQ typed.

At least that increases the probability 2.5 fold.

2. Get your children DQ typed.

3. You will know which ones are and are not at risk.

4. If they have similar symptoms they need no delay

going GF.

[Guest guest]

Michele-

Maybe the Dr or lab tech who looked at your biopsy

didn't have a lot of experience looking at somewhat

flattened villi. Your villi can be damaged and still

look similar to normal.

You probably do have celiac disease if you feel better

gluten-free.

If you are doing the g-f thing as well as possible,

but got diarrhea, perhaps there is a gluten source yo

overlooked.

I know that many people swear by Enterolabs and

Dr.Fine, but I personally am not convinced. If he

knows something everyone else should know, then he

should publish his findings so that others can

duplicate the results.

ly, I go with blood tests and endoscopies,

myself. However, if there is someone out there who

feels Enterolabs and Dr. Fine are fine, then that's

fine. Sorry. I won't argue with them, I just don't

feel anyone else can prove what he's proven, so it

isn't written in stone.

I am from Wisconsin, Near Milwaukee, but now live near

Los Angeles. I will be going to Green Bay for the

CSA/USA Conference from Oct. 6-8th. any chance that

you could go? You might get some questions answered.

Barbara in SoCal

__________________________________________________

[Guest guest]

Barbara:

What is CSA/USA and what information might I find there? It's

possible I may be able to attend if I think it would be helpful?

About entero lab. I take it that this testing is not supported by the

medical community, since you said Dr. Fine is not published. I was

just wondering if it was legit. I will definately give it careful

consideration. Not that I can help it. I think everything to death.

[Guest guest]

Michele - You might consider doing some gene testing. That can help

sort out what you may or may not have (no celiac gene = no celiac,

but celiac gene doesn't mean you have it, just that you could

develop it at some time).

On enterolab, it is true that Dr Fine has not yet published his

findings and that is a big part of the reason some folks distrust

his methods. There are doctors out there though, who will say his

approach makes alot of sense.

Sue in Denver

>

> Hi everyone. I have been reading every posting on this site for 3

> weeks before I got up the guts to write. I live in rural Northwest

> Wisconsin and I have been told by my GI doc that I have " probable

> celiac's disease " his recommendation was " just go on a gluten free

> diet " . Just go on a gluten fee diet? Like thats just as easy as

> giving up chocolate for lent. Anyway after 1 month of backing off

on

> it and going through binges I finally did it. Three weeks GF now.

At

> least I am to the best of my knowledge. Still a little shaky on

the

> hidden ingredients. It is not fun. I feel cheated and angry. I

keep

> thinking. Probable celiacs. So how about making it official.

There

> were no follow up appointments I was just told to go home and be

GF.

> Heres the question? If enterolab testing can make this more

> definitive than How come doctors are not using this testing. OR

maybe

> they are and My doc is just useless. What's the consensus. I Had

a

> colonoscopy and Upper GI endoscopy. Everything was normal. I only

> showed inflammation in the small intestine. No flattened villi if

I

> recall. Chrones and other bowel diseases ruled out. He took a

bunch of

> blood tests don't know what they were but they were all negative.

Two

> years ago I was on the ATkins diet and was symptom free. The dx

was

> based on this and the inflammation. Couldnt the inflammation be

> caused by something else? I had previous diagnosis of IBS and

GERD.

> The diet had eliminated my symptoms until 2 days ago. Now I have

> diarrhea again. Could be a bug. But cant tell the difference. I am

> sooo confused. One more question is anyone else out there in

Northwest

> Wisconsin??

>

[Guest guest]

Hi Michele and everyone -

CSA/USA is the Celiac Sprue Assn of the USA. It is a

non-profit support organization dedicated to helping

individuals with celiac disease and dermatitis

herpetiformis and their families worldwide through

information, education and research.

They have a conference every year, this year it is in

Green Bay WI. October6-8th.

The toll-free phone number is 877-CSA-4-CSA. email:

celiacs@.... website: www.csaceliacs.org.

The conference is rather expensive, $350, but I think

you can go just one day out of the 3 for a lower cost.

If you do decide to go, please look me up. My name

is Barbara Strudwick, and I'm from California.

No, Dr. Fine has not published the results of his

studies. If he would, I think he would be more highly

respected than he is by the rest of the medical

community. Many other physicians think he is a

charlatan and a fraud. I'm not saying that's what I

think, but what some other physicians have told me.

They think he is just out to make money. I've been

told that stool testing was proved inadequate many

years ago, and that is what he is doing now. He also

claims to be able to test stool samples for other

allergies and intolerances, but I don't know how he

does it. He told me that he uses the same tests on

the stools that are used to test blood for celiac

disease. But didn't give me a chance to ask further

questions. His talk (the one I heard) was full of

statements like: " this might " , " it may be that "

" perhaps this happens " and " it may be that " . You get

the idea. He was a good speaker, but very difficult

to in down.

I wish you, and all celiacs here, good health. I'd

love to meet you in Green Bay

Barbara in SoCal

__________________________________________________

[Guest guest]

Barbara, I'd go, but I'm getting things all ready for heading to Fort Worth,

TX. My husband and I will be gone from October 31st, and be back home

sometime on November 5th. Just got the motel room reserved. I show Appaloosa

horses and my gelding might've qualified for the World Championship

Appaloosa show, and that's my career, so it comes ahead of a lot of things,

other than my husband. He gave me the go on reserving the motel room, Now I

am so excited.

Hope you fill us in about the meeting. Looking forward to hearing about it.

In Regards, Donna

Dean & Donna ' Appaloosa Horses

www.donnaappaloosahorses.com

Welcome To Donna ' WebPage

http://donnaevans.multiply.com

Donna ' Blog WebPage

http://www.myspace.com/9586741

Re: INTRO and Question

> Hi Michele and everyone -

>

> CSA/USA is the Celiac Sprue Assn of the USA. It is a

> non-profit support organization dedicated to helping

> individuals with celiac disease and dermatitis

> herpetiformis and their families worldwide through

> information, education and research.

>

> They have a conference every year, this year it is in

> Green Bay WI. October6-8th.

>

> The toll-free phone number is 877-CSA-4-CSA. email:

> celiacs@.... website: www.csaceliacs.org.

>

> The conference is rather expensive, $350, but I think

> you can go just one day out of the 3 for a lower cost.

> If you do decide to go, please look me up. My name

> is Barbara Strudwick, and I'm from California.

>

> No, Dr. Fine has not published the results of his

> studies. If he would, I think he would be more highly

> respected than he is by the rest of the medical

> community. Many other physicians think he is a

> charlatan and a fraud. I'm not saying that's what I

> think, but what some other physicians have told me.

> They think he is just out to make money. I've been

> told that stool testing was proved inadequate many

> years ago, and that is what he is doing now. He also

> claims to be able to test stool samples for other

> allergies and intolerances, but I don't know how he

> does it. He told me that he uses the same tests on

> the stools that are used to test blood for celiac

> disease. But didn't give me a chance to ask further

> questions. His talk (the one I heard) was full of

> statements like: " this might " , " it may be that "

> " perhaps this happens " and " it may be that " . You get

> the idea. He was a good speaker, but very difficult

> to in down.

>

> I wish you, and all celiacs here, good health. I'd

> love to meet you in Green Bay

>

> Barbara in SoCal

>

> __________________________________________________

>

[Guest guest]

Donna -

Have a wonderful time in Texas! I've never been to

Fort Worth, except the airport. I've been to

Austin and to San . Liked both places alot.

We found the people in San very helpful and

friendly. Lots of good food, too. I wish yo the best

at the show! That is really exciting!

If you all are really interested, I can try to put

together a brief summary of the CSA Conference. It is

usually good, although I haven't been for several

years. I've been going to the Stanford Celiac

Conference in Palo Alto for the past few years. It's

so easy, I just fly up in the am, rent a car and drive

to Stanford. Attend the conference, all the food is

g-f, of course, drive back to the airport and fly

home. I don't even need to get a room for the night.

This year I am flying to Milwaukee on Oct 3rd. I have

several cousins I want to see. Two of them are

getting very old, and the other one is my closest

friend-relative. I'll drive to Green Bay on Thursday

and register. I couldn't get a room at the Regency

(where the conference is) on Saturday, so I'm spending

all 3 nights at the Days Inn, which is cheaper anyway.

On Sunday after the conference I'm driving to

Rockford, IL, where I went to nursing school. 10 of

our class are getting together for lunch on Monday.

On Tuesday I'm going to a suburb of Chicago to see a

high-school friend, and Wed it's back to Milwaukee for

another get-together with cousins, then home on

Thursday! I'm very excited!

I've been fortunate enough to be able to go to

Wisconsin for the past 5 or so years. If there's a

reason, I go. There have been several reunions, a

wedding, etc. Once I took my adult daughter, and once

my 9 year old grandson. They enjoyed it, too.

Wisconsin is very different from California.

My only concern is getting g-f food. I keep a record

of what I eat and where I eat it, but things change.

I don't check a bag when I travel, so I don't take

much food, just snack bars which I eat for breakfast

and on the plane if there is nothing else. At least

it's in the USA, so I can read the labels and ask

questions. I usually don't have problems. But

traveling when you have celiac disease is a real

challenge!

Does anyone know if 's baked potatoes are still

g-f? On the day I get in to Milwaukee, I won't arrive

at my motel until about 6:30 pm, and I will be hungry!

I know the motel, and there are a bunch of fast food

places right across the street! How about Taco Bell

nachos?

Later! Barbara in SoCal

__________________________________________________

[Guest guest]

Thank you, Barbara, Looking forward to the trip, and seeing my friends!

Donna

Dean & Donna ' Appaloosa Horses

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Re: INTRO and Question

> Donna -

>

> Have a wonderful time in Texas! I've never been to

> Fort Worth, except the airport. I've been to

> Austin and to San . Liked both places alot.

> We found the people in San very helpful and

> friendly. Lots of good food, too. I wish yo the best

> at the show! That is really exciting!

>

> If you all are really interested, I can try to put

> together a brief summary of the CSA Conference. It is

> usually good, although I haven't been for several

> years. I've been going to the Stanford Celiac

> Conference in Palo Alto for the past few years. It's

> so easy, I just fly up in the am, rent a car and drive

> to Stanford. Attend the conference, all the food is

> g-f, of course, drive back to the airport and fly

> home. I don't even need to get a room for the night.

>

> This year I am flying to Milwaukee on Oct 3rd. I have

> several cousins I want to see. Two of them are

> getting very old, and the other one is my closest

> friend-relative. I'll drive to Green Bay on Thursday

> and register. I couldn't get a room at the Regency

> (where the conference is) on Saturday, so I'm spending

> all 3 nights at the Days Inn, which is cheaper anyway.

> On Sunday after the conference I'm driving to

> Rockford, IL, where I went to nursing school. 10 of

> our class are getting together for lunch on Monday.

> On Tuesday I'm going to a suburb of Chicago to see a

> high-school friend, and Wed it's back to Milwaukee for

> another get-together with cousins, then home on

> Thursday! I'm very excited!

>

> I've been fortunate enough to be able to go to

> Wisconsin for the past 5 or so years. If there's a

> reason, I go. There have been several reunions, a

> wedding, etc. Once I took my adult daughter, and once

> my 9 year old grandson. They enjoyed it, too.

> Wisconsin is very different from California.

>

> My only concern is getting g-f food. I keep a record

> of what I eat and where I eat it, but things change.

> I don't check a bag when I travel, so I don't take

> much food, just snack bars which I eat for breakfast

> and on the plane if there is nothing else. At least

> it's in the USA, so I can read the labels and ask

> questions. I usually don't have problems. But

> traveling when you have celiac disease is a real

> challenge!

>

> Does anyone know if 's baked potatoes are still

> g-f? On the day I get in to Milwaukee, I won't arrive

> at my motel until about 6:30 pm, and I will be hungry!

> I know the motel, and there are a bunch of fast food

> places right across the street! How about Taco Bell

> nachos?

>

> Later! Barbara in SoCal

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Ha!! I will be in that same area at the same time you are. We are

headed back on the 6th and my brother gets married on the 7th and we

will stay with my mom and dad. Then we will be in Milwaukee for a

few days visiting my sister and then we are going up to Door County

and Green Bay for a couple of days. Lastly we are hitting up La

Crosse to see my in-laws and then back up to where we live in MN.

Yea!! It will a nice vaca. Too bad I can't make it to that

conference. I would have loved to have gone, but this year it's

just not doable.

As far as the food thing goes, 's potatoes are okay, but the TB

nachos aren't. There is a Boston Market that isn't that far from

the airport and there are several things there that are okay. I

think Milwaukee has a pretty good selection of places to get some

food at. Now, up in GB, I have no idea.

Rhiannon

>

> Donna -

>

> Have a wonderful time in Texas! I've never been to

> Fort Worth, except the airport. I've been to

> Austin and to San . Liked both places alot.

> We found the people in San very helpful and

> friendly. Lots of good food, too. I wish yo the best

> at the show! That is really exciting!

>

> If you all are really interested, I can try to put

> together a brief summary of the CSA Conference. It is

> usually good, although I haven't been for several

> years. I've been going to the Stanford Celiac

> Conference in Palo Alto for the past few years. It's

> so easy, I just fly up in the am, rent a car and drive

> to Stanford. Attend the conference, all the food is

> g-f, of course, drive back to the airport and fly

> home. I don't even need to get a room for the night.

>

> This year I am flying to Milwaukee on Oct 3rd. I have

> several cousins I want to see. Two of them are

> getting very old, and the other one is my closest

> friend-relative. I'll drive to Green Bay on Thursday

> and register. I couldn't get a room at the Regency

> (where the conference is) on Saturday, so I'm spending

> all 3 nights at the Days Inn, which is cheaper anyway.

> On Sunday after the conference I'm driving to

> Rockford, IL, where I went to nursing school. 10 of

> our class are getting together for lunch on Monday.

> On Tuesday I'm going to a suburb of Chicago to see a

> high-school friend, and Wed it's back to Milwaukee for

> another get-together with cousins, then home on

> Thursday! I'm very excited!

>

> I've been fortunate enough to be able to go to

> Wisconsin for the past 5 or so years. If there's a

> reason, I go. There have been several reunions, a

> wedding, etc. Once I took my adult daughter, and once

> my 9 year old grandson. They enjoyed it, too.

> Wisconsin is very different from California.

>

> My only concern is getting g-f food. I keep a record

> of what I eat and where I eat it, but things change.

> I don't check a bag when I travel, so I don't take

> much food, just snack bars which I eat for breakfast

> and on the plane if there is nothing else. At least

> it's in the USA, so I can read the labels and ask

> questions. I usually don't have problems. But

> traveling when you have celiac disease is a real

> challenge!

>

> Does anyone know if 's baked potatoes are still

> g-f? On the day I get in to Milwaukee, I won't arrive

> at my motel until about 6:30 pm, and I will be hungry!

> I know the motel, and there are a bunch of fast food

> places right across the street! How about Taco Bell

> nachos?

>

> Later! Barbara in SoCal

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Rhiannon -

Too bad you couldn't squeeze in one day of the

conference, but so be it! Thanks for the answer on

the 's baked potato. I think that first night

I'll just have that for dinner. I won't be a really

long day of traveling, but I'll be tired, have some

phone calls to make, and don't want to take any

chances with unexpected gluten. On the rest of the

days and evenings I can worry about questioning

waiters.

I'm not worried about the food in Green Bay, the food

at the conference will all be gluten-free. However on

Sunday, they are ending the conference at 11:30! Can

you believe it? I'm sure it's just so they won't have

to feed us! So I'll have to figure out a way to get a

good lunch before a 250 mile drive to Rockford. It'll

all be a challenge! Even so, I think it will be a

great trip, because I'm seeing so many people.

Barbara in SoCal

__________________________________________________

[Guest guest]

Yes, but what about the time that you aren't at the conference. I

am guessing you aren't eating breakfast, lunch and dinner there,

right? Just a thought.

>

> Rhiannon -

>

> Too bad you couldn't squeeze in one day of the

> conference, but so be it! Thanks for the answer on

> the 's baked potato. I think that first night

> I'll just have that for dinner. I won't be a really

> long day of traveling, but I'll be tired, have some

> phone calls to make, and don't want to take any

> chances with unexpected gluten. On the rest of the

> days and evenings I can worry about questioning

> waiters.

>

> I'm not worried about the food in Green Bay, the food

> at the conference will all be gluten-free. However on

> Sunday, they are ending the conference at 11:30! Can

> you believe it? I'm sure it's just so they won't have

> to feed us! So I'll have to figure out a way to get a

> good lunch before a 250 mile drive to Rockford. It'll

> all be a challenge! Even so, I think it will be a

> great trip, because I'm seeing so many people.

>

> Barbara in SoCal

>

> __________________________________________________

>