putting off biopsy / Rejoyce

[Guest guest]

I did the same thing... put off the biopsy due to being extremely ill. Blood tests were positive and endoscopy was scheduled a month later. I started to notice an improvement after being GF for a couple of weeks. When we're ready to do the biopsy, don't we have to re-introduce gluten to our bodies? What did your son's dr say about that? I have one child that is going to be tested next week... poor thing is showing a lot of the symptoms I went through. Cheryl in NM Rejoyce Hanson wrote: This is one of the reasons we really must finalize the CD diagnosis. We took him GF so fast due to his failing health that we bi-passed the biopsy for the time being -- note he was 3 and the size of his 18 month old sister. Dr. Fasano told me it was fine to wait until he was stronger and healthier and that is all I needed to hear. I'm waiting for diagnosis techinques to become less invasive and more accurate. The fact remains even the blood test are not very accurate, 29% accurate in the presence of partial villi atrophy! It's no wonder so many are misdiagnosed for years. Rejoyce VA

[Guest guest]

I'm curious why everyone's pediatricians are insisting they get the

biopsy done? Mine looked at the blood work (slightly elevated IgG)

and did a food challenge. All three of my kids reacted so positively

to the GF diet and then had intense negative reactions to

reintroduced gluten, that she said they obviously are gluten

intolerant and take them off and keep them off the stuff. I've been

told that gluten intolerance doesn't necessarily go hand-in-hand

with recognizable intestinal damage, so, I'm just confused. If the

biopsy comes back negative, after the child has progressed so well

on the GF diet, would the doctor tell you to start feeding them

gluten again? (I'm not trying to be antagonistic, but because by the

time I even heard about the biopsy my kids were way past the damage

stage, I just can't fathom the necessity.)

This is one of the reasons

we really must finalize the CD diagnosis.

> We took him GF so fast due to his failing health that we bi-

passed

> the biopsy for the time being -- note he was 3 and the size of

his 18

> month old sister. Dr. Fasano told me it was fine to wait until

he was

> stronger and healthier and that is all I needed to hear.

>

> I'm waiting for diagnosis techinques to become less invasive and

more

> accurate. The fact remains even the blood test are not very

accurate,

> 29% accurate in the presence of partial villi atrophy! It's no

wonder

> so many are misdiagnosed for years.

>

> Rejoyce

> VA

>

[Guest guest]

But without the biopsy you don't know if it is gluten intolerance or

truly Celiac Disease. It may not matter to you as long as your

children are doing excellent on the GF diet. And that's

understandable. But others want to know which it is. And to have

the biopsy done correctly, gluten needs to be ingested for a period

of time, because without the gluten there won't be damage.

It's a tough call for parents to make, do you have your children eat

gluten and cause them pain to have the biopsy and have a definitive

answer? Or do you accept the diagnosis as Gluten Intolerant and

avoid the pain of eating gluten again, while wondering " could it be

Celiac? "

This is one of the reasons

> we really must finalize the CD diagnosis.

> > We took him GF so fast due to his failing health that we bi-

> passed

> > the biopsy for the time being -- note he was 3 and the size of

> his 18

> > month old sister. Dr. Fasano told me it was fine to wait until

> he was

> > stronger and healthier and that is all I needed to hear.

> >

> > I'm waiting for diagnosis techinques to become less invasive

and

> more

> > accurate. The fact remains even the blood test are not very

> accurate,

> > 29% accurate in the presence of partial villi atrophy! It's no

> wonder

> > so many are misdiagnosed for years.

> >

> > Rejoyce

> > VA

> >

>

[Guest guest]

The only blood test that came back for my daughter was the genetic marker for

celiac. Her biopsy was negative except for inflamed villi-he only took 4-and he

said that it was impossible for her to have CD. She quit eating gluten almost

month ago and all her symptoms have reversed. She has only been sick once since

GF but her acne on her arms and back are clearing, she grew a 1/2 inch-she

hasn't grown since she was 12-now 16, she got her periods back, she can go to

her dance classes again and finish them, her joints and muscles don't hurt like

they used to, etc......I think that is proof enough.

I didn't care for that doctor from the beginning. We are waiting for our entero

labs to come back and then will go back to her GP with the results. We aren't

going to go back to the GI.

Zanna

http://groups.yahoo.com/group/Art_on_A_Budget/

My daily rantings!

www.zannasstory.blogspot.com

My picture trail:

www.picturetrail.com/xanadoodles

[Guest guest]

Yes, it's a tough call. My husband and I suspect a couple of our kids may have it. Eventually, we want it to be a GF home to make things easier on me. So we decided to have each child tested before we have them go GF. It will determine if they have to remain GF as an adult (when they're on their own) or not. Cheryl in NM wrote: But without the biopsy you don't know if it is gluten intolerance or truly Celiac Disease. It may not matter to you as long as your children are doing excellent

on the GF diet. And that's understandable. But others want to know which it is. And to have the biopsy done correctly, gluten needs to be ingested for a period of time, because without the gluten there won't be damage. It's a tough call for parents to make, do you have your children eat gluten and cause them pain to have the biopsy and have a definitive answer? Or do you accept the diagnosis as Gluten Intolerant and avoid the pain of eating gluten again, while wondering "could it be Celiac?" This is one of the reasons > we really must finalize the CD diagnosis. > > We took him GF so fast due to his failing health that we bi- > passed > > the biopsy for the time being -- note he was 3 and the size of > his 18 > > month old sister. Dr. Fasano told me it was fine to wait

until > he was > > stronger and healthier and that is all I needed to hear. > > > > I'm waiting for diagnosis techinques to become less invasive and > more > > accurate. The fact remains even the blood test are not very > accurate, > > 29% accurate in the presence of partial villi atrophy! It's no > wonder > > so many are misdiagnosed for years. > > > > Rejoyce > > VA > > >

[Guest guest]

The biopsy is such an unreliable test, and remember, it can only be used to rule Celiac in. A negative result does not mean you don't have Celiac or couldn't develop it later.

Molly

But without the biopsy you don't know if it is gluten intolerance or truly Celiac Disease. It may not matter to you as long as your children are doing excellent on the GF diet. And that's understandable. But others want to know which it is. And to have the biopsy done correctly, gluten needs to be ingested for a period of time, because without the gluten there won't be damage. It's a tough call for parents to make, do you have your children eat gluten and cause them pain to have the biopsy and have a definitive answer? Or do you accept the diagnosis as Gluten Intolerant and avoid the pain of eating gluten again, while wondering " could it be Celiac? "

This is one of the reasons > we really must finalize the CD diagnosis. > > We took him GF so fast due to his failing health that we bi-

> passed> > the biopsy for the time being -- note he was 3 and the size of > his 18> > month old sister. Dr. Fasano told me it was fine to wait until > he was> > stronger and healthier and that is all I needed to hear.

> > > > I'm waiting for diagnosis techinques to become less invasive and > more> > accurate. The fact remains even the blood test are not very > accurate,> > 29% accurate in the presence of partial villi atrophy! It's no > wonder> > so many are misdiagnosed for years.> > > > Rejoyce> > VA> >>

[Guest guest]

In a message dated 7/20/2006 9:07:41 PM Eastern Standard Time, SillyYaks writes:

But others want to know which it is. And to have the biopsy done correctly, gluten needs to be ingested for a period of time, because without the gluten there won't be damage.

I can understand the desire to want to know....but wouldn't a genetic test be easier, quicker and much less painful?! (and in the long run may cost less, since the sickness created could cause one lost work time?) And in children, they would not suffer in their daily lives; school and activities (music lessons and dance/sports, etc would all be seriously affected for *months*?! totally not worth it to me...)

But the genetic test? definitely the way to go, just the prick of a needle....instead of REintroducing gluten....oh, I don't ever intend to go there again...

My NSHO,

"We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names, and all are different colors....but they all exist very nicely in the same box." ~unknown~

[Guest guest]

My friend's son (11) had multiple symptoms. His pediatric gi strongly suspected cd. His blood was tested at Quest and Prometheus, and was negative both times, except for elevated IGG (or IGA, don't remember which...anyway the allergest said it could indicate an allergy and he is allergic to milk). The gi recommended a biopsy anyway. That was also negative. The doc asked them to go gf for 3 months. And now the kids is much, much better. No need to see a neurologist, no need for psychological counseling, no more sitting in the bathroom trying to go because of "irratible bowel". I say if it turns out that a traditional diagnosis is possible, great. But if not, why continue to poison yourself or your kids while waiting for the damage to get bad enough to show up on a biopsy. Or get sick eating gluten just for the convenience of the doctor ( a confirmed diagnosis on the medical

chart). We decided against a biopsy for my blood positive son. I think by the time he's a bit older the biopsy will be history for all. I. Pandolfo Photography by http://www.photographybywendy.photosite.com/ __________________________________________________

[Guest guest]

I agree. To me this is an 'on-the-fence' topic. I agree with both

sides. The biopsy may give a definitive answer or it may be

inconclusive. Same with the blood work. Gene testing is an

excellent option. And if you have the gene and feel 100% better on

a GF diet, why bother eating gluten to have the biopsy?! However, I

also agree with people that opt to have the biopsy, since it's still

viewed as the " Gold Standard. "

When I was diagnosed 24 yrs ago, there was no blood work and gene

testing. Those were in development. I ended up having 4 biopsies

total, for diagnosis & to make sure my intestines healed. And don't

forget the gluten challenge that used to be standard! I'm just glad

I was too young to remember any of the trauma now!

Thank goodness medical science has advanced over the years.

Hopefully, the biopsy will be obsolete in upcoming years.

>

>

> In a message dated 7/20/2006 9:07:41 PM Eastern Standard Time,

> SillyYaks writes:

>

> But others want to know which it is. And to have

> the biopsy done correctly, gluten needs to be ingested for a

period

> of time, because without the gluten there won't be damage.

>

>

>

> I can understand the desire to want to know....but wouldn't a

genetic test

> be easier, quicker and much less painful?! (and in the long run

may cost

> less, since the sickness created could cause one lost work

time?) And in

> children, they would not suffer in their daily lives; school and

activities (music

> lessons and dance/sports, etc would all be seriously affected for

*months*?!

> totally not worth it to me...)

> But the genetic test? definitely the way to go, just the prick

of a

> needle....instead of REintroducing gluten....oh, I don't ever

intend to go there

> again...

>

> My NSHO,

>

>

> " We could learn a lot from crayons: some are sharp, some are

pretty, some are

> dull, some have weird names, and all are different colors....but

they all

> exist very nicely in the same box. " ~unknown~

>

[Guest guest]

I know I answered this yesterday! I think this system has it in for

my posts, lol! Anyway...

I still don't get it. Since gluten intolerance can (at this point in

time it's known to) come in three destructive forms, DH, CD and

Gluten Ataxia, all under the heading of gluten intolerance or gluten

sensitivity, the latter two of which can cause

health/growth/emotional/mental problems/brain damage, and since only

one of the three will ever be caught with a biopsy, if a person is

feeling awful and goes on a gf diet without a biopsy, reacts very

positively, that person KNOWS they are gluten sensitive. Since

gluten sensitivity doesn't go away, you'll need to remain on a gf

diet. The biopsy might show damage to the intestines, but unless

you're willing to poison yourself or child for an extended period of

time, long enough to actually cause enough physical damage that a

random set of relatively tiny biopsies taken from a very long

intestinal track will show damage, it will likely not show any

damage. Meanwhile you are compromising your or your child's health

for months. Besides this, if you are unfortunate enough to also have

the other gluten sensitivity issues, how long are you willing to

subject yourself or developing child to painful headaches, emotional

issues and brain damage (which may or may not effect growth) in the

off chance that the intestines will be damaged enough to change the

overall diagnosis from gluten sensitivity to the more specific

intestinal reaction of celiac disease?

I am not certain if I'm glad my kids' pediatrician was so firm in

her assertions that a mild positive IgG and strong positive reaction

to a gf diet was enough for a diagnosis. Will someone who's child

reacted well to a gf diet put that child back on gluten if the

biopsy comes back negative? Are doctors saying now that without

active intestinal damage, even if you are sensitive in other ways,

it's not necessary to be gf? (I don't actually have a doctor that I

speak with about this. Even the pediatrician, who's moved, btw,

didn't really understand CD.) So, I'm wondering what doctors who GET

IT are saying.

And, if this has been discussed before and everyone is tired of it,

just tell me to drop it. I'm not that kind of sensitive...

This is one of the

reasons

> > we really must finalize the CD diagnosis.

> > > We took him GF so fast due to his failing health that we bi-

> > passed

> > > the biopsy for the time being -- note he was 3 and the size

of

> > his 18

> > > month old sister. Dr. Fasano told me it was fine to wait

until

> > he was

> > > stronger and healthier and that is all I needed to hear.

> > >

> > > I'm waiting for diagnosis techinques to become less invasive

> and

> > more

> > > accurate. The fact remains even the blood test are not very

> > accurate,

> > > 29% accurate in the presence of partial villi atrophy! It's

no

> > wonder

> > > so many are misdiagnosed for years.

> > >

> > > Rejoyce

> > > VA

> > >

> >

>

[Guest guest]

Just remember that the genetic test only

tells whether you have a pre-disposition to Celiac. Having the gene doesn’t

mean you have or will ever have the disease. It’s helpful information,

but is not really diagnostic.

And having experienced a gluten challenge

myself in order to have the biopsy—well, I wouldn’t do it to my

child, that’s for sure!

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of InHISdesign@...

Sent: Thursday, July 20, 2006

11:34 PM

To: SillyYaks

Subject: Re: putting

off biopsy / Rejoyce

In a

message dated 7/20/2006 9:07:41 PM Eastern Standard Time, SillyYaks writes:

But others want to know which it

is. And to have

the biopsy done correctly, gluten needs to be ingested for a period

of time, because without the gluten there won't be damage.

I can

understand the desire to want to know....but wouldn't a genetic test be easier,

quicker and much less painful?! (and in the long run may cost less, since

the sickness created could cause one lost work time?) And in children,

they would not suffer in their daily lives; school and activities (music

lessons and dance/sports, etc would all be seriously affected for *months*?!

totally not worth it to me...)

But the

genetic test? definitely the way to go, just the prick of a

needle....instead of REintroducing gluten....oh, I don't ever intend to go

there again...

My NSHO,

" We could learn a lot from crayons: some are sharp, some

are pretty, some

are dull, some have weird names, and all are different

colors....but they all

exist very nicely in the same box. " ~unknown~