Re: gluten challenge

[Guest guest]

I'm afraid you must be eating gluten in order to minimize the chance of false negatives in either a blood test or a biopsy. Even with gluten, you may get a false negative in either one. The biopsy is said to be far more reliable, but even it may be fail to show CD damage, especially if samples taken miss the affected area.

I mention this for the sake of people who are just beginning to investigate CD.

Ideally, one would have the blood test immediately after the first suspicion of CD, so that no time spent gluten-free would intervene. As the blood test is simple and relatively inexpensive even without insurance, this should be possible. If the blood test comes back negative, it's often possible to have a biopsy/endoscopy scheduled almost immediately. (I recently had one done within 18 hours of my doctor deciding I needed it.)

H.

In a message dated 10/25/06 2:26:12 AM, narenw@... writes:

When everything else pointed

to celiac disease I fault my doctor and also myself for not thinking,

is this test 100% accurate? An important thing to learn from this is

YOU DO NOT HAVE TO BE EATING GLUTEN FOR A BLOOD TEST.

[Guest guest]

anyone can make their own personal decisions, but when you say " even

with gluten you may get a false negative on a blood test " , you are

confirming that this blood test is not a reliable test on which to

conclude that you DO NOT have CD. I don't know about false positives

but it seems the test is more useful to take and see if you get a

positive, then maybe you can do it again later or proceed however you

wish. As far as the endoscopy goes, my understanding is that it's

pretty darn accurate. They are looking at a biopy of your intestinal

tissue under a microscope, and that damage does not go away for about

a year... minimum. My understanding according to the so called

experts is that the endoscopy is much, much more reliable than a blood

test. A false negative is like how you can never say never. And

whatever the stats are, if you are getting a noticeable reaction when

you are eating things high in gluten for god's sake stay off it!

Naren

On 10/25/06, flatcat9@... <flatcat9@...> wrote:

> I'm afraid you must be eating gluten in order to minimize the chance of

> false negatives in either a blood test or a biopsy. Even with gluten, you

> may get a false negative in either one. The biopsy is said to be far more

> reliable, but even it may be fail to show CD damage, especially if samples

> taken miss the affected area.

>

> I mention this for the sake of people who are just beginning to investigate

> CD.

>

> Ideally, one would have the blood test immediately after the first

> suspicion of CD, so that no time spent gluten-free would intervene. As the

> blood test is simple and relatively inexpensive even without insurance, this

> should be possible. If the blood test comes back negative, it's often

> possible to have a biopsy/endoscopy scheduled almost immediately. (I

> recently had one done within 18 hours of my doctor deciding I needed it.)

>

> H.

>

> In a message dated 10/25/06 2:26:12 AM, narenw@... writes:

>

>

>

> When everything else pointed

> to celiac disease I fault my doctor and also myself for not thinking,

> is this test 100% accurate? An important thing to learn from this is

> YOU DO NOT HAVE TO BE EATING GLUTEN FOR A BLOOD TEST.

>

>

>

[Guest guest]

Excellent information, well stated. Thanks.

H.

In a message dated 10/25/06 7:40:41 PM, seamaiden399@... writes:

There are two issues to consider when thinking about a blood test.

Some (small percentage of) people do not have the ability to produce

the antibodies that are tested for- so your docter should also test to

make sure that you can produce those antibodies at all.

Also, there are two kinds of antibodies that can be tested for. The

old school doctors may test for the antibodies that were first

connected to celiac, but these antibodies take considerable time for

levels to rise, so they are better at showing long term accumulative

gluten damage. Doctors that are familiar with more recent research

test for those antibodies but also for another kind of antibodies that

are connected to celiac.

You DO need to be eating gluten for these tests to be as accurate as

possible. And you CAN get a false negative if you have been off gluten

for long enough.

Biopsies are only as accurate as the samples that were taken, and as

good as the doctor who is reading them. Doctors that are well versed

in Celiac often like to review the biopsy data so they can confirm (or

refute) the diagnosis. But, the biopsy IS still the "gold standard"

for a nationally recognized diagnosis.

[Guest guest]

There are two issues to consider when thinking about a blood test.

Some (small percentage of) people do not have the ability to produce

the antibodies that are tested for- so your docter should also test to

make sure that you can produce those antibodies at all.

Also, there are two kinds of antibodies that can be tested for. The

old school doctors may test for the antibodies that were first

connected to celiac, but these antibodies take considerable time for

levels to rise, so they are better at showing long term accumulative

gluten damage. Doctors that are familiar with more recent research

test for those antibodies but also for another kind of antibodies that

are connected to celiac.

You DO need to be eating gluten for these tests to be as accurate as

possible. And you CAN get a false negative if you have been off gluten

for long enough.

Biopsies are only as accurate as the samples that were taken, and as

good as the doctor who is reading them. Doctors that are well versed

in Celiac often like to review the biopsy data so they can confirm (or

refute) the diagnosis. But, the biopsy IS still the " gold standard "

for a nationally recognized diagnosis.

[Guest guest]

in france, it's the ONLY accepted test, and leads to disability points and life

time social

security (ok, it's 10bucks a month, but still).

as for the blood test, we are both negative (too long on the diet). and I thank

God for the

class 4 on wheat for martin. Because that is something the allergist

understands.

Again. Testing can be done daily for anything. What is the purpose of the

testing?

For most people who ARE sick eating gluten and ARE NOT sick on a diet.. a piece

of paper

would not change anything. They will stay on a diet because they are not

masochists.

If the test has any legal reason (insurance claim, or whatever), then I beleive

there is no

shortcut. The biopsy is needed.. and yes, most GE will give you the slides for

second

opinion (To reduce false neg, you need at least 10 samples taken on several

sides, and

over 4-5 inch of gut length). To be negative ALL the samples NEED to have less

than 20

anomalities per 100 cells (or something like it)

quoting Dr Aron, most GE are too lazy to count all slides, but youre welcome to

do the

count yourself.

And in my opinion, someone who would be border line (18-22 on all slides).. AND

have

any symptom AND improves on a GF diet SHOULD BE POSITIVE no matter what.

From my understanding (correct me if I'm wrong), there is NO reason to have a

" little "

damage, or a " little " of antibodies. Either you have some, or you dont.

People who have little damage should be considered lucky instead of

hypocondriacs...

because they can heal completely and FAST...

Like you shouldnt stop smoking because you ONLY have a couple bronchitites a

year? what

doctor would actually tell you to keep smoking because you dont have measurable

cancer

cellls, yet?

Anyway.. I'm trying to get some awareness in my family. Since I learned that we

might weel

be a celiac family, I've been trying to get all of them tested (blood test is

fine. I guess if

only 1 or 2 test positive amoung 20.. people will start to listen to me). And

not later than

today, my mom told me my cousin is " sick " .. and my antie was saying how hard

our diet

must be... (read me.. she IS thinking about a connection between celiac and her

son, and

she IS starting to consider having to go GF for him....)

OK, OK, I stop babbling. I guess we ALL agree:

Suspicion of celiac. Get IMMEDIATLY blood tested (50 to 200bucks. make sure you

have

the COMPLETE pannel)

If negative, discuss about biopsy ASAP.

And from there.. the ultimate test. Go GF and see for yourself if you improve...

and most

of all, if you get VERY SICK from those unfortunate contaminations.

going GF is a pain. I have not yet met anybody who is doing the diet " for fun "

(not to

mistake with people who think they do a diet, but dont)

Sophie and .

>

But, the biopsy IS still the " gold standard "

> > for a nationally recognized diagnosis.

> >

> >

> >

>

[Guest guest]

Mine strongly suggested I have a biopsy, although my blood test was negative.

H.

In a message dated 10/27/06 7:33:22 AM, isaiah.benjamin@... writes:

I've been told that many doctors will not approve a biopsy if your blood test is negative.

[Guest guest]

Sophie,

My understanding is that I have been gluten-free too long for a biopsy

to be conclusive. In other words, I'd need to go on a gluten challenge

in order for the biopsy, too... And when I tried the gluten challenge

it made me so unbearably sick I don't think I could manage to do 3

months of gluten, which is what I've read is the standard for a gluten

challenge. Also, I've been told that many doctors will not approve a

biopsy if your blood test is negative. It makes me feel " between a rock

and a hard place " ... I want a definite diagnosis yet as it stands I

have too much going on with my health (other health conditions, that

are negatively effected by my gluten consumption) to put myself at risk

by doing a gluten challenge. This is so frustrating. If anyone is out

there who has not yet started a GF diet: GET TESTED FIRST! I wish I

had, because this is really frustrating.

Isaiah.

[Guest guest]

I'm so very sorry.

Did you contact Dr Aron? He uses several tests and has a matrix of his own to

rule in or out

celiac.... and specificaly, if you CANNOT do a challenge for the biopsy, he uses

tricks that are

valid too (like your blood test is not zero, and you have the genes, and one of

your parents

test positive or seomthing like that)

Sophie

--- In , " Isaiah " <isaiah.benjamin@...>

wrote:

>

I wish I had, because this is really frustrating.

>

> Isaiah.

>

[Guest guest]

Have you had the celiac gene testing done? This can at least rule out

celiac... and if you're double gened, it is extremely likely that you

have celiac, esp. combined with the fact that you react very badly to

gluten.

>

> Sophie,

>

> My understanding is that I have been gluten-free too long for a

biopsy to be

> conclusive. In other words, I'd need to go on a gluten challenge in

order

> for the biopsy, too... And when I tried the gluten challenge it made

me so

> unbearably sick I don't think I could manage to do 3 months of

gluten, which

> is what I've read is the standard for a gluten challenge.

[Guest guest]

Hi - Yes I've had the gene DNA testing done and I have one celiac gene

and one gluten intolerance gene, according to Enterolab. According to

their stool tests I also am gluten intolerant, soy intolerant and

casein intolerant. I do think their test will eventually be considered

legitimate in the medical community. But since it's not right now...

There's part of me that wants a medically conclusive diagnosis.

IB

[Guest guest]

I’m in this “rock-and-a-hard-place”

too. My insurance won’t pay for the gene testing, and even if it

would, it only tells you that you *might*

have it. As the folks at the celiac conference said, 40% of the

population has the genes, but only about 1% have the disease.

Though I must say I wonder about these

numbers – I haven’t been included, nor have the other two people I

know well who have the same condition. I have a hard time with

this: We all feel better on a GF diet, yet the only way to get a DX is to

go back to consuming the very thing that makes us so sick in the first place.

SO, three out of three people I know (not

including you guys – I’m including only people I know IRL), feel

better on a GFdiet, yet we cannot be included in the stats. What does

this say for the *actual* number

of people who are celiacs????

From: [mailto: ] On Behalf Of Isaiah

Sent: Friday, October 27, 2006

9:14 PM

Subject: Re: [ ] Re:

" gluten challenge "

Hi - Yes

I've had the gene DNA testing done and I have one celiac gene and one gluten

intolerance gene, according to Enterolab. According to their stool tests I also

am gluten intolerant, soy intolerant and casein intolerant. I do think their

test will eventually be considered legitimate in the medical community. But

since it's not right now... There's part of me that wants a medically

conclusive diagnosis.

IB

[Guest guest]

WAIT... about 35% are CARRIER of ONE gene

simple math gives 3-5% CARRIER of BOTH genes.

Dr Aron tells that in his mind " both " = " celiac " - period. (lucky the ones in

dormant celiac,

or remission celiac, but all are at risk long term)

It IS possible for a lab to test if you have ONE or TWO genes (the matrix

becomes dificult

considering that we are actually talking about several " addresses " of genes, and

each

should be tested for one or two " tenants " ). But it IS possible. And Dr Aron

referes to one

specific lab that does the full analysis (San Diego or seomwhere like that????

poor memory

of mine). Contact him for more info.

DO NOT do wild internet money genetic tests. Have them order by a doc who can

SPECIFY

the test needed, and then READ the results to you. (the price is the same,

and/or might be

less expensive by doc)

that was my 2 cents.

Sophie

>

> I'm in this " rock-and-a-hard-place " too. My insurance won't pay for the

> gene testing, and even if it would, it only tells you that you *might* have

> it. As the folks at the celiac conference said, 40% of the population has

> the genes, but only about 1% have the disease.

>

> Though I must say I wonder about these numbers - I haven't been included,

> nor have the other two people I know well who have the same condition. I

> have a hard time with this: We all feel better on a GF diet, yet the only

> way to get a DX is to go back to consuming the very thing that makes us so

> sick in the first place.

>

>

> SO, three out of three people I know (not including you guys - I'm including

> only people I know IRL), feel better on a GFdiet, yet we cannot be included

> in the stats. What does this say for the *actual* number of people who are

> celiacs????

>

>

>

> _____

>

> From: [mailto: ]

> On Behalf Of Isaiah

> Sent: Friday, October 27, 2006 9:14 PM

>

> Subject: Re: [ ] Re: " gluten challenge "

>

>

>

> Hi - Yes I've had the gene DNA testing done and I have one celiac gene and

> one gluten intolerance gene, according to Enterolab. According to their

> stool tests I also am gluten intolerant, soy intolerant and casein

> intolerant. I do think their test will eventually be considered legitimate

> in the medical community. But since it's not right now... There's part of me

> that wants a medically conclusive diagnosis.

>

> IB

>

[Guest guest]

>Dr Aron tells that in his mind " both " = " celiac " - period.

But only one gene does NOT mean you DON'T have celiac, according to my doctors.

>DO NOT do wild internet money genetic tests.

I don't know who you're talking to, but if it was me... I didn't have a

'wild internet money' genetic test. I had a legitimate gene test from

an accredited lab. It is easy to have a genetic test done via blood or

stool from many different labs, including ones that don't require a

doctor's prescription. It's a straightforward test, from the research

I've done, that has very little room for error esp when going through a

legitimate laboratory.

Now, INTERPRETING a lab result fully and/or conclusively is something

I'd leave to a doctor. But there is no reason why someone who doesn't

want a celiac diagnosis to show up on their insurance record (in my

case), or whose doctor refuses to test them (in many peoples' cases)

can't go through an accredited lab on their own to see what genes they

carry.

Before you make generalizations telling other people what to do, you

might want to consider that not all doctors agree with eachother, not

all doctors advise their patients the same thing (thus all the

conflicting info many of us have), there are major disagreements about

how celiac disease is diagnosed, and there are a lot of different

reasons why some people do non-doctor-ordered lab testing in addition

to standard lab testing. If it weren't for these tests, there are an

awful lot of people who'd still be extremely ill from celiac disease or

gluten intolerance out there. I think it's important to remember that

you dont' know the whole picture of peoples' situations from their

e-mails - And that what one doctor says is gospel is considered bunk by

another, which will probably continue being the case for a while as

researchers are discovering how much they don't yet know about gluten

intolerance & celiac disease.

[Guest guest]

Isaiah.. sorry. we might have misunderstood each other.

* I didnt say one or no gene = no celiac. I meant that IF the lab can give a

result of TWO

genes, then the search is over. One gene only is a useless result (if if was,

then 35% of the

population should be gluten free.. which is NOT supported by the fact that human

beings

still exist 2000 years after the " wide spread " of celiac) (I dont address either

people who

are on GF diet for ANOTHER reason, like some known diseases, but do NOT have the

genes, or both genes. Now should those people be called " celiac " too? it's up to

you)

* wild internet money testing.

there ARE some good labs. and guess what? these labs test for doc and hospital

too. But

SOME labs are not. You think you have a good deal because it's half price, or

faster, or

more convenient, or something. But it's not. because the result is so bad you

cant use it. I

said that because we WERE scammed by a specific lab. And guess how? they

claimed they

could do BETTER than another lab, when in fact they just wrapped some poor

results in a

fancy schmancy booklet. (and NO there were not in partnership with any

accredited

hopsital or medical team - our mistake)

* the insurance thing. I completely understand. But MOST lab that work in

partnership

WITH insurance will let you do private testing. So " who " pays at the end

shouldnt impact

on the quality of the testing and paying yourself is not a valid reason to go to

borderline

legal testing. (note that I dont quote the big testing names here, but if you

google, you

might find dozens and dozens of online testing beyond the few big names - so do

your

search - and yes, even enterolab doesnt give complete accurate testing. One way

to know

is to send TWICE your sample under different names. *sometimes* you wont get the

same

results - and nobody knows why)

Last, I'm sorry to totally disagree on your conclusion. It looks like MOST

people DIDNT got

diagnosed FIRST... but found out FIRST and then figured out if they could be

tested. USA

does NOT test systematically. Leave this to some specific european countries.

So pushing forward GOOD testing practices is in my opinion ridiculous - until we

have a

mandatory testing that covers at least 70% people in a country. That's the ONLY

way to

make sure that the testing is accurate, and doesnt flicker for race, age, food

diet (think

cajun or mexican) or whatever reason. And yes, some countries have laws

regarding celiac

testing, and yes, their testing is screwd up too. But al least they have a

staring point, and

they did improve the testing with time, and used couple alt methods against each

other to

figure out which one should be used.

Testing is helpfull, I agree, and in most case, it's only an official " life

sentence " (to quote

bay area ROCK) but I havent met one single person who was on strict diet because

of a

stupid word on a stupid paper (in fact they dont.. give up after a few months or

years, or

never go to gluten free but rather to low gluten). but I meet people who are on

a diet

because otherwise they are SICK. And they were happy to end their search when

starting a

diet (before or after testing) they got better.

And that's why some people have been on gluten free diet for the past 2000

years...

because they were sick, and the diet made them better. and yes, I agree that

research on

celiac is FAR from over. but hey! biotech silicon valley money is hopefully

working on it as

we speak. :-)

* Now if there is a legal reason for an official diagnose.. it's up to you to

pick the test you

want. Pick one and you can prove your insurance you are NOT sick. pick another

test and

you can prove your dr you ARE sick. Does this change anything to the hell you

live when

you are on gluten? I dont think so. If you want to fool yourself, you can also,

as you say,

pick one GE a year, get a " not-sick " diagnoses, then the next year go to another

GE and

get a " sick " diagnosic. You can go from one doctor to another.. and change the

status of

you diagnoses every month if you want. (not sure it would help in anyway -

that's what's

usualy called " hypochondriac " )

As for the latest fancy research on the subject. I quote Dr Aron, because so

far, he's the

only one who did impress me. Not by his knowledge (which is widest than most)

but by his

devil advocate attitude. He always starts to prove the opposite so he's forced

to the

conclusion, instead of twisting things so they appear to his liking. (like those

fake stats,

and SOOOOOOOOOOOO many dr's attitude around the world)

He's a good guy. He's open to ANY question, ANY concerned. When a celiac mum

asked if

breastfeeding was good or bad he sent some breast milk to get it tested -

because he

DIDNT have an answer, studies available were empty useless wind (like some

psycho-

philosophical studies with no lab research at all), and he WANTED to know.. And

yes, he

makes mistakes, and explain people how and why he makes the mistake so others

wont

repeat his mistake.

(and he's the one who will tell you the list of GE in the bay area who are lazy

and DO NOT

COUNT the damaged cells on the biopsy slides, because ... it's boring and long

and they

dont have time for that and then you end up with a screwed diagnose - and he'll

tell you

to get your slides and count yourself)

Now if you have a better dr on hand, good for you.

It took me 5 years in the bay area to get my list of trusted doctors.. and I

wasted a mega

amount of money on dr that are more idiots than a donkey (brains full, some good

experience, but deaf as stones). I'm more than willing to lengthen my list of

trusted dr if

you gave me good references.

And yes, I do try to read most opinions around.... and none scientific BS is

usually the

most interesting, because it points to loopholes and gaps in the most scientific

studies.

Loopholes that will not void the studies, but leave room for a complementary

study. (my

fav is to look at the stats of a study. If done on less than 2000 people and not

double

blind, stats are NOT valid whatsoever IMO , and I dig for individual results

[most reserches

and PhDs are available online] for some facts - like if study is on 10 peoples,

it's quick to

read the full report on EACH person, instead of sticking to the " average BS

stats " )

last, I REALLY dont understand your problem. You ARE on a gluten free diet so

nothing

should matter to you. It's simple. you eat gluten and you are sick? stay on

gluten free. you

dont NEED a diagnoses, it WONT CHANGE any other illness you have either way, or

better,

reducing your leaky gut and improving your nutrient absorbtion WILL IMPROVE your

general condition and might HELP any other condition you might have.

What are you trying to know? that you are indeed stuck with a life sentence?

that your

children are at risk too? how sad.

Should smokers bug their doctor to test every month till they find the first

cancer cell to

stop smoking? ridiculous? yes you bet.

you are among the RARE lucky ones who have a good start to get out of hell. A

specific

diet for the next 5 years. Follow your diet, eat your greens, and focus on

healing your gut.

Reassess in 5 years. Repeat till death (from natural reason in a long long long

time)

you are just a normal human being - with a normal body, an normal working

system. You

received at birth your green eyes, your small feet and some funny thing in your

gut that

you cant eat gluten. Birth lotery. Nothing more, nothing less. You are not in

any way any

different from the " average " human being. Celiac (or should I specificaly say

here " gluten

intolerence " ) is the ONLY SICKNESS in the medical field that can be 100% treated

with NO

medication and NO change beyond skipping gluten - and ALL the symptoms

eventually go

away, with NO possible worsening (if on diet). How cool is that? check the web.

no other

sickness can claim that. ... maybe a good reason to consider that it's NOT a

sickness but

rather a different " human type " ?

Guys seldom complain that they dont have monthly periods, and dont have to pop

the pill

daily. Why should we complain that we cannot have gluten? women got liberated

and got a

world about split between guys and girls. It's up to us to get OUR world too -

EOE (Equal

Opportunity Eaters) . It's not a " disease " it's just the way we are.

(hmmmmmmmmmmmmm... did I just plagiated the LGBT argumentation here? been in

san francisco too long ;-) )

If gluten, casein and soy are bothering you, take them out of your diet and

carry on.

YOU are the one to know how sick they make you. YOU have the power to remove

them

from your diet. No side effect whatsover (beyond the hole in your wallet - altho

considering the cost of healthcare.. I have doubts about the real cost of GF)

sorry. I went WAY over the line.. but I re-read all your messages, and they

didnt make

sense to me.

And no, I'm dont have " the truth " .. I;ve only been fighting within my own

family for years

because celiac has been runing from a couple generations in the family, and it

has been

the " shhhhhhhhhhhh we have a family disease " thing.. and their stupid behavior

lead to

more tears and cries than needed. Things like painful repeated miscarriages for

my sister.

Now that I say it's like our blue eyes runs in our family thing, .. some finaly

accepts the

idea of getting tested, eventually (2 of my cousins are on heavy medications for

side

effects of celiac. the parents are still refusing to test, because they refuse

to even consider

having to change the way they cook. Drugs are MUCH MORE easier in their opinion

:bang: )

Sophie

--- In , " Isaiah " <isaiah.benjamin@...>

wrote:

>

> >Dr Aron tells that in his mind " both " = " celiac " - period.

>

> But only one gene does NOT mean you DON'T have celiac, according to my

> doctors.

>

> >DO NOT do wild internet money genetic tests.

>

> I don't know who you're talking to, but if it was me... I didn't have a

> 'wild internet money' genetic test. I had a legitimate gene test from an

> accredited lab. It is easy to have a genetic test done via blood or stool

> from many different labs, including ones that don't require a doctor's

> prescription. It's a straightforward test, from the research I've done, that

> has very little room for error esp when going through a legitimate

> laboratory.

>

> Now, INTERPRETING a lab result fully and/or conclusively is something I'd

> leave to a doctor. But there is no reason why someone who doesn't want a

> celiac diagnosis to show up on their insurance record (in my case), or whose

> doctor refuses to test them (in many peoples' cases) can't go through an

> accredited lab on their own to see what genes they carry.

>

> Before you make generalizations telling other people what to do, you might

> want to consider that not all doctors agree with eachother, not all doctors

> advise their patients the same thing (thus all the conflicting info many of

> us have), there are major disagreements about how celiac disease is

> diagnosed, and there are a lot of different reasons why some people do

> non-doctor-ordered lab testing in addition to standard lab testing. If it

> weren't for these tests, there are an awful lot of people who'd still be

> extremely ill from celiac disease or gluten intolerance out there. I think

> it's important to remember that you dont' know the whole picture of peoples'

> situations from their e-mails - And that what one doctor says is gospel is

> considered bunk by another, which will probably continue being the case for

> a while as researchers are discovering how much they don't yet know about

> gluten intolerance & celiac disease.

>