Re: Negative tests/Esther

[Guest guest]

Oh heavens no Esther, just keep in mind I'm new to this and have NO idea what is right or wrong. That's why my questions may sound ignorant.. they are..lol. I appreciate your bluntness. I just didn't know if my test came back neg. if that was the end of it. According to my dr. it was. Now I know different!

Sorry if my reply was overwhelming.I'm a talkalot by nature.Esther

KATIE B.Happy Summer

[Guest guest]

Two former coworkers, from my days on the payroll, had funny

jokes I like to keep in mind:

First Joke:

Q: What do you call the doctor who graduates bottom of the class

at med school?

A: " Doctor "

Second Joke:

You know Medicine. If they can't find it, you ain't got it.

This is NOT a slam against doctors on the whole. This is reality.

When it comes to celiac, it's REALLY important to keep in mind

that just because the biopsy is negative and just because the

blood work is negative, the real proof remains in the GF diet.

Celiac is a great masquerader. Celiac can be subtle: too subtle

for tests but present enough to make you miserable.

The problem with celiac is that it is still far more rare than

parasites, viruses, bacteria, other food intolerances, and the

like. So, if the quick-n-dirty tests don't instantly reveal

celiac, the doc doesn't want you to have to be burdened by a

GF diet.

And don't be fooled: in many ways the GF diet *IS* a burden.

But, if it's a burden that frees you, then... well,... " The

burden is easy and the yoke is light " - to steal a phrase from

The Big JC.

>

> I just didn't know if my test came back neg.

> if that was the end of it. According to my dr. it was.

> Now I know different!

>

You're luckier than I was. Had I found this group earlier I could

have spared myself a few years of suffering I bet.

In 2000 I was told most emphatically " not celiac " . Believe me,

I had gluten for five more years.

If only I knew then what I know now!

Esther

[Guest guest]

Two former coworkers, from my days on the payroll, had funny

jokes I like to keep in mind:

First Joke:

Q: What do you call the doctor who graduates bottom of the class

at med school?

A: " Doctor "

Second Joke:

You know Medicine. If they can't find it, you ain't got it.

This is NOT a slam against doctors on the whole. This is reality.

When it comes to celiac, it's REALLY important to keep in mind

that just because the biopsy is negative and just because the

blood work is negative, the real proof remains in the GF diet.

Celiac is a great masquerader. Celiac can be subtle: too subtle

for tests but present enough to make you miserable.

The problem with celiac is that it is still far more rare than

parasites, viruses, bacteria, other food intolerances, and the

like. So, if the quick-n-dirty tests don't instantly reveal

celiac, the doc doesn't want you to have to be burdened by a

GF diet.

And don't be fooled: in many ways the GF diet *IS* a burden.

But, if it's a burden that frees you, then... well,... " The

burden is easy and the yoke is light " - to steal a phrase from

The Big JC.

>

> I just didn't know if my test came back neg.

> if that was the end of it. According to my dr. it was.

> Now I know different!

>

You're luckier than I was. Had I found this group earlier I could

have spared myself a few years of suffering I bet.

In 2000 I was told most emphatically " not celiac " . Believe me,

I had gluten for five more years.

If only I knew then what I know now!

Esther

[Guest guest]

Two former coworkers, from my days on the payroll, had funny

jokes I like to keep in mind:

First Joke:

Q: What do you call the doctor who graduates bottom of the class

at med school?

A: " Doctor "

Second Joke:

You know Medicine. If they can't find it, you ain't got it.

This is NOT a slam against doctors on the whole. This is reality.

When it comes to celiac, it's REALLY important to keep in mind

that just because the biopsy is negative and just because the

blood work is negative, the real proof remains in the GF diet.

Celiac is a great masquerader. Celiac can be subtle: too subtle

for tests but present enough to make you miserable.

The problem with celiac is that it is still far more rare than

parasites, viruses, bacteria, other food intolerances, and the

like. So, if the quick-n-dirty tests don't instantly reveal

celiac, the doc doesn't want you to have to be burdened by a

GF diet.

And don't be fooled: in many ways the GF diet *IS* a burden.

But, if it's a burden that frees you, then... well,... " The

burden is easy and the yoke is light " - to steal a phrase from

The Big JC.

>

> I just didn't know if my test came back neg.

> if that was the end of it. According to my dr. it was.

> Now I know different!

>

You're luckier than I was. Had I found this group earlier I could

have spared myself a few years of suffering I bet.

In 2000 I was told most emphatically " not celiac " . Believe me,

I had gluten for five more years.

If only I knew then what I know now!

Esther

[Guest guest]

Is it worth bothering with tests? or should I just do an elimination diet?esther_p210 wrote: Two former coworkers, from my days on the payroll, had funnyjokes I like to keep in mind:First Joke:Q: What do you call the doctor who graduates bottom of the classat med school?A: "Doctor"Second Joke:You know Medicine. If they can't find it, you ain't got it.This is NOT a slam against doctors on the whole. This is reality.When it comes to celiac, it's

REALLY important to keep in mindthat just because the biopsy is negative and just because theblood work is negative, the real proof remains in the GF diet.Celiac is a great masquerader. Celiac can be subtle: too subtlefor tests but present enough to make you miserable.The problem with celiac is that it is still far more rare thanparasites, viruses, bacteria, other food intolerances, and thelike. So, if the quick-n-dirty tests don't instantly revealceliac, the doc doesn't want you to have to be burdened by aGF diet. And don't be fooled: in many ways the GF diet *IS* a burden.But, if it's a burden that frees you, then... well,... "Theburden is easy and the yoke is light" - to steal a phrase fromThe Big JC.>> I just didn't know if my test came back neg. > if that was the

end of it. According to my dr. it was. > Now I know different!> You're luckier than I was. Had I found this group earlier I couldhave spared myself a few years of suffering I bet.In 2000 I was told most emphatically "not celiac". Believe me,I had gluten for five more years. If only I knew then what I know now!Esther __________________________________________________

[Guest guest]

The tests have their merit if you keep in mind that they aren't

perfect. They aren't perfect but they're the best that is available

now.

In my own case, a thousand other causes for my misery had been

ruled out: virus, bacteria, parasite, gall bladder issues, ulcer,

ulcerating colitis, and more.

Each of those is more likely than celiac. And even celiac is more

likely than the other rare they found that I have: lymphocytic

colitis.

So, if your doc has ruled out more common causes of misery and yet

you remain miserable, Doc can try to rule in/rule out celiac with

tests. But if you take the tests and the docs say " Nope, not

celiac " ... and you have no place left to turn... try cutting out

all gluten (in even its ten gazillion hidey places). (Leaving

even a little smidge of gluten in the diet will perpetuate the

misery if you are celiac.)

The real question, then, becomes " Why do the tests? "

Because they're easier to do than the gluten free diet. They take

a few days out of your life at most. And if they rule celiac IN,

then you have an answer and can go forward with a clear mind and

a clear firm plan.

Trying an elimination diet is the TRUE proof, in my opinion. But

it's a lot of work and a steep learning curve. And it will take

some time to show its results.

I'm typing with a heavy sigh. I wish I could give you an easy

answer. But the reality of this ailment is that nothing is

easy: finding it, dealing with it.

But if you discover, via tests or via experimenting with diet,

that you should be gluten-free, then you will go gluten-free and

never look back. You will feel worlds better if this is the

answer you need. Honest. You will find gluten-free versions of

your favorites and you will like them. You will not miss the

pain from the old way of life. You will even stop using the

word " substitute " (as in " gluten-free substitute for pizza " ).

You will be happy to simply say " gluten free pizza " and know

that it can be just as yummy as its poison-based cousin.

I send you an e-hug. I was equally as lost as you feel just a

year ago right now. A year ago right now I was in mind-numbing

body-bending misery. I had the blood tests a year ago this

week. I got the answer " ambiguous, further testing needed " a

year ago next week. I took the colonoscopy and endoscopy a

year ago next month. And October 1 I went GF, even though the

GI doc was saying " NOT celiac " . My primary care doc's nurse

practitioner, who'd seen me suffer for SO LONG, said " Go

gluten-free any way. It can't hurt you. And if it helps you,

then you will have the true answer. " When I read on the web

that many (not all) folks who have lymphocytic colitis are

helped by a GF diet, then I told myself to bite the bullet and

go GF. Sept 30, 2005 was my last deliberate good bite of

gluten. Couldn't even tell you what it was.

Since 9/30/2005, I've had other bites of gluten and WISH I

HADN'T. They're so small that I can't even tell you what they

were and I certainly didn't relish them. But even though they're

too small to be seen, they pack a whallop. (Just like that

commercial about the blood clots, the ad for Plavix... " Joe

was no match for something 1 millionth his size: a clot. " The

celiac corrolary is " Esther is no match for something one

millionth her size: a crouton crumb in the sauce on the chicken

in a meal at a restaurant. " )

Hang in there!!!!!!

Esther in RI

>

> Is it worth bothering with tests? or should I just do an

elimination diet?

>

>...

[Guest guest]

Esther,

You should write a book. You are so good at putting things into the written word!

[Guest guest]

>

>

> Esther,

> You should write a book. You are so good at putting things

> into the written word!

>

>

" There is no more dangerous gift to posterity than a few cleverly

turned platitudes. "

As for Esther Paris, she would write immortal literature if she

were sure enough about anything to risk telling any one else

about it.

(Should I apologize to F. Fitzgerald? I promise I will the

next time I visit his grave. (I have visited it once. Honest.))

http://www.bartleby.com/115/15.html

I used to be a writer. I wrote technical manuals about software.

Ho hum. Then I " upgraded " to the job of system's administrator

because I thought it would be SO GLAMOUROUS to have all computer

privileges and to know all the answers all the time. I didn't

realize it was the most thankless job in the known Universe and

that I would not enjoy it so much. Nowadays, I've traded that all

in for my new job:

- lots of travel

- literature, great and small

- learning about new cuisines (specializing in PB&J, Mac & Cheese)

- managing the finances of 100% of an enterprise

- part medicine, part counselor, part guru

My title? " MOM "

But the one great thing about my job as a system administrator

is that it led to my current job. I met my hubby via email at

work LONG before email dating was commonplace! We emailed for

6 months, living in two different states, before we finally

met face-to-face.

Esther in RI

[Guest guest]

I agree, I love reading your posts!!!!

>

>

> Esther,

> You should write a book. You are so good at putting things into the

written word!

>

>