Re: Free Celiac screening in Chicago this fall

[Guest guest]

Thanks, --I'm going to see if my doctor will test me for this, but if not, I'll phone U of C...it's a long drive for us but we could make it. In all of your research on celiac, did you find out whether a blood test is definitive or not? If the test is negative, does that mean one can stop worrying about it? Because I had heard that sometimes false negatives occur...so I find myself thinking, well, if I test positive, then I'll know, but if I test negative, then I may not know anything!

I've gotten increasingly suspicious about gluten in our diets, especially since we do so much better with sprouted grains...I was reading recently, though I haven't been able to confirm that this is true (I read it on someone's web blog), that sprouting greatly reduces the amount of gluten in grains. If that's true, and we are doing so much better on a low gluten diet, that suggests to me that gluten may be a problem for our family...also, since I've been eating mostly raw foods, it makes it easier for me to detect changes that occur when I do eat something like pasta, or even if I have croutons on a salad in a restaurant. I'm finding that if I eat in a restaurant, and have croutons on my salad, that I'm sniffling and have a scratchy throat by the time I walk out...I'm not sure if it's the croutons, though, or the chlorinated water, or possibly both...the effect does diminish if I avoid having water while eating out. On the other hand, GF breads/crackers really do make my stomach hurt! I swear, someday I'm going to end up unable to digest anything but green smoothies...

Bonnie

If you even remotely wonder if you or your child is gluten intolerant

and/or a celiac and you're close enough to Chicago - you might want to

check this out. The Univ. of Chicago offers free screening once a year.

http://www.celiacdisease.net/free-blood-screening

[Guest guest]

Hi Bonnie,

About the testing, here's what I've learned/deduced:

1) " gold Standard " test = intestine biopsy

It's my impression that an intestine biopsy is the test that most

mainstream gastros (and other docs) will say is " required " for a

diagnosis of celiac. However, there is a lot of literature and

commentary out there that indicates that this test can give false

negatives.

There are apparently some histological (microscopic tissue) features

that not all gastros or pathologists are properly trained to look for.

Sometimes the orientation of the tissue can alter the ability to make

the diagnosis. (I can say from firsthand experience doing histology

work in the lab that tissue orientation on the slide is *critical* to

make a proper histological assessment.) Also, as I mentioned before,

the biopsy takes several tiny tiny samples from the intestine. Celiac

damage to the intestines can be heterogeneous and not consistent

throughout any stretch of tissue. So, in my view, the biopsy is like

reaching into a jar of 100 marbles. 75 marbles are green, 25 are

yellow. If you reach in and grab 10 marbles, and they all turn out to

be green, that doesn't mean that there are no yellow marbles in there.

It just means you didn't grab one from the right place. That's how I

view the biopsies, also. If the biopsies aren't taken from an

affected area, it's not proof that no part of the small intestine is

damaged.

And, there are " asymptomatic " patients and Celiacs who have only got

" extragastrointestinal " symptoms.

Also, I've read one research abstract (maybe the whole article, I

can't remember & don't have time to look it up again right now – can

later if you'd like) which reported that in certain celiacs, the

biopsy process itself can result in tremendous inflammation/damage to

the local tissue, so to me may not be worth the risk of more damage.

2) Antibody testing:

Serum (blood) antibody testing for anti-tissue transglutaminase

(tTG), anti-endomysial, and anti-gliadin antibodies. Typically, the

IgA antibodies are screened. The problem with that is one needs to be

sure " total serum IgA " is concomitantly tested for because many

celiacs have low total IgA and therefore can have " false negative "

antibody tests. They can check the IgG forms of some of these

antibodies (definitely anti-gliadin, not sure about the other two…??)

Stool antibody testing (as done by Enterolab) makes the most sense to

me as far as the antibody testing is concerned. The antibodies that

are being assayed are being made and secreted

in the GI tract, so to test the levels in the blood stream (especially

if a person already has low total serum IgA) seems useless.

The anti-endomysial antibody test has a positive predictive value of

99%. I believe it is similar for anti-tTG…

3) genetic testing (via blood or cheek swab) -

This will reveal if a person harbors any of the genes currently known

to be associated with celiac and/or gluten intolerance. The results

of this test do not depend on whether gluten is in the diet or not.

There are certain alleles of the HLA-DQA and HLA-DQB genes that are

known to be associated with Celiac and/or gluten intolerance. The

presence of these alleles does not, apparently, in itself indicate

that a person has Celiac, just that they have the genetic component(s)

that predispose to the development of the disease. Certain

environmental factors (e.g., amount of gluten exposure, duration of

gluten exposure, hormonal fluctuations (e.g., pregnancy), certain

viral infections, etc, etc) can trigger the development of Celiac in

genetically predisposed individuals.

While we know of certain alleles that are definitely associated with

Celiac and/or gluten intolerance, but there might be alleles that

aren't known about yet, as well.

For me, antibody and genetic testing are all I needed. I will not

subject my children or myself to the biopsy process. In our case, we

have Celiac and gluten intolerance genes and have elevated levels of

anti-tTG and anti-gliadin. To me, that spells trouble and perhaps a

hardcore mainstream physician would tell me I cannot call myself a

Celiac without a small intestine biopsy. My point would be, I don't

even care what the biopsy might say (of course, the elevated anti-tTG

equates to tissue damage so it would be shocking if I had a biopsy

turn up negative anyway). Even if they a biopsy came back

negative, I wouldn't imagine going back to eating gluten.

Why risk it? Why wait until the damage has gotten so bad that it's

detected via biopsy?

Another important note – antibody or biopsy tests should be performed

prior to removing all gluten from the diet. (the genetic testing does

not depend on gluten in the diet)…

So, I'm not sure how well I answered your question, Bonnie…?? I think

starting with whatever testing your doc will order and will get

covered under your insurance plan is a good place to start. But I

would press hard to do both antibody and genetic screening. And, with

the antibody screening, I would not trust a negative serum IgA

screening to truly be negative. Make sure the do total serum IgA as

well, but even still, if it's " negative " - I would strongly consider

follow up with stool testing at Enterolab.

HTH…..??!!

Best,

p.s. - I'm not familiar with the symptoms of chlorine sensitivity

(fearful to find out as we can't afford RO system at this time, so I

try to believe my family is o.k. with the water for now..!!?? head in

sand here...) But, I can say that what you've described (sniffly and

scratchy throat) are two exact things happening to me when I first was

" gluten free " by day with DS and sneaking a cookie or cracker by night

after he was in bed. I would get stuffy headed, scratchy throat, and

start to feel foggy headed. . .

>

> > If you even remotely wonder if you or your child is gluten

intolerant

> > and/or a celiac and you're close enough to Chicago - you might want to

> > check this out. The Univ. of Chicago offers free screening once a

year.

> >

> > http://www.celiacdisease.net/free-blood-screening

> >

> >

> >

>

[Guest guest]

Thanks, --This is a huge help. I did go ahead and get the celiac panel done today...so I'm very curious to see what those results will be!Bonnie

Hi Bonnie,

About the testing, here's what I've learned/deduced:

1) " gold Standard " test = intestine biopsy

It's my impression that an intestine biopsy is the test that most

mainstream gastros (and other docs) will say is " required " for a

diagnosis of celiac. However, there is a lot of literature and

commentary out there that indicates that this test can give false

negatives.

There are apparently some histological (microscopic tissue) features

that not all gastros or pathologists are properly trained to look for.

Sometimes the orientation of the tissue can alter the ability to make

the diagnosis. (I can say from firsthand experience doing histology

work in the lab that tissue orientation on the slide is *critical* to

make a proper histological assessment.) Also, as I mentioned before,

the biopsy takes several tiny tiny samples from the intestine. Celiac

damage to the intestines can be heterogeneous and not consistent

throughout any stretch of tissue. So, in my view, the biopsy is like

reaching into a jar of 100 marbles. 75 marbles are green, 25 are

yellow. If you reach in and grab 10 marbles, and they all turn out to

be green, that doesn't mean that there are no yellow marbles in there.

It just means you didn't grab one from the right place. That's how I

view the biopsies, also. If the biopsies aren't taken from an

affected area, it's not proof that no part of the small intestine is

damaged.

And, there are " asymptomatic " patients and Celiacs who have only got

" extragastrointestinal " symptoms.

Also, I've read one research abstract (maybe the whole article, I

can't remember & don't have time to look it up again right now – can

later if you'd like) which reported that in certain celiacs, the

biopsy process itself can result in tremendous inflammation/damage to

the local tissue, so to me may not be worth the risk of more damage.

2) Antibody testing:

Serum (blood) antibody testing for anti-tissue transglutaminase

(tTG), anti-endomysial, and anti-gliadin antibodies. Typically, the

IgA antibodies are screened. The problem with that is one needs to be

sure " total serum IgA " is concomitantly tested for because many

celiacs have low total IgA and therefore can have " false negative "

antibody tests. They can check the IgG forms of some of these

antibodies (definitely anti-gliadin, not sure about the other two…??)

Stool antibody testing (as done by Enterolab) makes the most sense to

me as far as the antibody testing is concerned. The antibodies that

are being assayed are being made and secreted

in the GI tract, so to test the levels in the blood stream (especially

if a person already has low total serum IgA) seems useless.

The anti-endomysial antibody test has a positive predictive value of

99%. I believe it is similar for anti-tTG…

3) genetic testing (via blood or cheek swab) -

This will reveal if a person harbors any of the genes currently known

to be associated with celiac and/or gluten intolerance. The results

of this test do not depend on whether gluten is in the diet or not.

There are certain alleles of the HLA-DQA and HLA-DQB genes that are

known to be associated with Celiac and/or gluten intolerance. The

presence of these alleles does not, apparently, in itself indicate

that a person has Celiac, just that they have the genetic component(s)

that predispose to the development of the disease. Certain

environmental factors (e.g., amount of gluten exposure, duration of

gluten exposure, hormonal fluctuations (e.g., pregnancy), certain

viral infections, etc, etc) can trigger the development of Celiac in

genetically predisposed individuals.

While we know of certain alleles that are definitely associated with

Celiac and/or gluten intolerance, but there might be alleles that

aren't known about yet, as well.

For me, antibody and genetic testing are all I needed. I will not

subject my children or myself to the biopsy process. In our case, we

have Celiac and gluten intolerance genes and have elevated levels of

anti-tTG and anti-gliadin. To me, that spells trouble and perhaps a

hardcore mainstream physician would tell me I cannot call myself a

Celiac without a small intestine biopsy. My point would be, I don't

even care what the biopsy might say (of course, the elevated anti-tTG

equates to tissue damage so it would be shocking if I had a biopsy

turn up negative anyway). Even if they a biopsy came back

negative, I wouldn't imagine going back to eating gluten.

Why risk it? Why wait until the damage has gotten so bad that it's

detected via biopsy?

Another important note – antibody or biopsy tests should be performed

prior to removing all gluten from the diet. (the genetic testing does

not depend on gluten in the diet)…

So, I'm not sure how well I answered your question, Bonnie…?? I think

starting with whatever testing your doc will order and will get

covered under your insurance plan is a good place to start. But I

would press hard to do both antibody and genetic screening. And, with

the antibody screening, I would not trust a negative serum IgA

screening to truly be negative. Make sure the do total serum IgA as

well, but even still, if it's " negative " - I would strongly consider

follow up with stool testing at Enterolab.

HTH…..??!!

Best,

p.s. - I'm not familiar with the symptoms of chlorine sensitivity

(fearful to find out as we can't afford RO system at this time, so I

try to believe my family is o.k. with the water for now..!!?? head in

sand here...) But, I can say that what you've described (sniffly and

scratchy throat) are two exact things happening to me when I first was

" gluten free " by day with DS and sneaking a cookie or cracker by night

after he was in bed. I would get stuffy headed, scratchy throat, and

start to feel foggy headed. . .

>

> > If you even remotely wonder if you or your child is gluten

intolerant

> > and/or a celiac and you're close enough to Chicago - you might want to

> > check this out. The Univ. of Chicago offers free screening once a

year.

> >

> > http://www.celiacdisease.net/free-blood-screening

> >

> >

> >

>

[Guest guest]

P.S. We're just using a Brita system to filter out chlorine. I know RO would be better and I can't afford it right now either--but the Brita system seems to filter out enough for me.

Thanks, --This is a huge help. I did go ahead and get the celiac panel done today...so I'm very curious to see what those results will be!Bonnie

Hi Bonnie,

About the testing, here's what I've learned/deduced:

1) " gold Standard " test = intestine biopsy

It's my impression that an intestine biopsy is the test that most

mainstream gastros (and other docs) will say is " required " for a

diagnosis of celiac. However, there is a lot of literature and

commentary out there that indicates that this test can give false

negatives.

There are apparently some histological (microscopic tissue) features

that not all gastros or pathologists are properly trained to look for.

Sometimes the orientation of the tissue can alter the ability to make

the diagnosis. (I can say from firsthand experience doing histology

work in the lab that tissue orientation on the slide is *critical* to

make a proper histological assessment.) Also, as I mentioned before,

the biopsy takes several tiny tiny samples from the intestine. Celiac

damage to the intestines can be heterogeneous and not consistent

throughout any stretch of tissue. So, in my view, the biopsy is like

reaching into a jar of 100 marbles. 75 marbles are green, 25 are

yellow. If you reach in and grab 10 marbles, and they all turn out to

be green, that doesn't mean that there are no yellow marbles in there.

It just means you didn't grab one from the right place. That's how I

view the biopsies, also. If the biopsies aren't taken from an

affected area, it's not proof that no part of the small intestine is

damaged.

And, there are " asymptomatic " patients and Celiacs who have only got

" extragastrointestinal " symptoms.

Also, I've read one research abstract (maybe the whole article, I

can't remember & don't have time to look it up again right now – can

later if you'd like) which reported that in certain celiacs, the

biopsy process itself can result in tremendous inflammation/damage to

the local tissue, so to me may not be worth the risk of more damage.

2) Antibody testing:

Serum (blood) antibody testing for anti-tissue transglutaminase

(tTG), anti-endomysial, and anti-gliadin antibodies. Typically, the

IgA antibodies are screened. The problem with that is one needs to be

sure " total serum IgA " is concomitantly tested for because many

celiacs have low total IgA and therefore can have " false negative "

antibody tests. They can check the IgG forms of some of these

antibodies (definitely anti-gliadin, not sure about the other two…??)

Stool antibody testing (as done by Enterolab) makes the most sense to

me as far as the antibody testing is concerned. The antibodies that

are being assayed are being made and secreted

in the GI tract, so to test the levels in the blood stream (especially

if a person already has low total serum IgA) seems useless.

The anti-endomysial antibody test has a positive predictive value of

99%. I believe it is similar for anti-tTG…

3) genetic testing (via blood or cheek swab) -

This will reveal if a person harbors any of the genes currently known

to be associated with celiac and/or gluten intolerance. The results

of this test do not depend on whether gluten is in the diet or not.

There are certain alleles of the HLA-DQA and HLA-DQB genes that are

known to be associated with Celiac and/or gluten intolerance. The

presence of these alleles does not, apparently, in itself indicate

that a person has Celiac, just that they have the genetic component(s)

that predispose to the development of the disease. Certain

environmental factors (e.g., amount of gluten exposure, duration of

gluten exposure, hormonal fluctuations (e.g., pregnancy), certain

viral infections, etc, etc) can trigger the development of Celiac in

genetically predisposed individuals.

While we know of certain alleles that are definitely associated with

Celiac and/or gluten intolerance, but there might be alleles that

aren't known about yet, as well.

For me, antibody and genetic testing are all I needed. I will not

subject my children or myself to the biopsy process. In our case, we

have Celiac and gluten intolerance genes and have elevated levels of

anti-tTG and anti-gliadin. To me, that spells trouble and perhaps a

hardcore mainstream physician would tell me I cannot call myself a

Celiac without a small intestine biopsy. My point would be, I don't

even care what the biopsy might say (of course, the elevated anti-tTG

equates to tissue damage so it would be shocking if I had a biopsy

turn up negative anyway). Even if they a biopsy came back

negative, I wouldn't imagine going back to eating gluten.

Why risk it? Why wait until the damage has gotten so bad that it's

detected via biopsy?

Another important note – antibody or biopsy tests should be performed

prior to removing all gluten from the diet. (the genetic testing does

not depend on gluten in the diet)…

So, I'm not sure how well I answered your question, Bonnie…?? I think

starting with whatever testing your doc will order and will get

covered under your insurance plan is a good place to start. But I

would press hard to do both antibody and genetic screening. And, with

the antibody screening, I would not trust a negative serum IgA

screening to truly be negative. Make sure the do total serum IgA as

well, but even still, if it's " negative " - I would strongly consider

follow up with stool testing at Enterolab.

HTH…..??!!

Best,

p.s. - I'm not familiar with the symptoms of chlorine sensitivity

(fearful to find out as we can't afford RO system at this time, so I

try to believe my family is o.k. with the water for now..!!?? head in

sand here...) But, I can say that what you've described (sniffly and

scratchy throat) are two exact things happening to me when I first was

" gluten free " by day with DS and sneaking a cookie or cracker by night

after he was in bed. I would get stuffy headed, scratchy throat, and

start to feel foggy headed. . .

>

> > If you even remotely wonder if you or your child is gluten

intolerant

> > and/or a celiac and you're close enough to Chicago - you might want to

> > check this out. The Univ. of Chicago offers free screening once a

year.

> >

> > http://www.celiacdisease.net/free-blood-screening

> >

> >

> >

>

[Guest guest]

ahh.... so maybe our refrigerator's filter is doing the job? I'll

have to check into that!

> > > >

> > > > > If you even remotely wonder if you or your child is gluten

> > > intolerant

> > > > > and/or a celiac and you're close enough to Chicago - you

might want

> > > to

> > > > > check this out. The Univ. of Chicago offers free screening

once a

> > > year.

> > > > >

> > > > > http://www.celiacdisease.net/free-blood-screening

> > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> > >

> >

> >

>

[Guest guest]

Keep us posted!

> > >

> > > > If you even remotely wonder if you or your child is gluten

> > intolerant

> > > > and/or a celiac and you're close enough to Chicago - you might

want to

> > > > check this out. The Univ. of Chicago offers free screening once a

> > year.

> > > >

> > > > http://www.celiacdisease.net/free-blood-screening

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Bonnie that could be a MSG problem, croutons are sprinkled with seasoning salt, usually with MSG...............Bonnie Juettner wrote: Thanks, --I'm going to see if my doctor will test me for this, but if not, I'll phone U of C...it's a long drive for us but we could make it. In all of your research on celiac, did you find out whether a blood test is definitive or not? If the test is negative, does that mean one can stop worrying about it? Because I had heard that sometimes false negatives occur...so I find

myself thinking, well, if I test positive, then I'll know, but if I test negative, then I may not know anything!I've gotten increasingly suspicious about gluten in our diets, especially since we do so much better with sprouted grains...I was reading recently, though I haven't been able to confirm that this is true (I read it on someone's web blog), that sprouting greatly reduces the amount of gluten in grains. If that's true, and we are doing so much better on a low gluten diet, that suggests to me that gluten may be a problem for our family...also, since I've been eating mostly raw foods, it makes it easier for me to detect changes that occur when I do eat something like pasta, or even if I have croutons on a salad in a restaurant. I'm finding that if I eat in a restaurant, and have croutons on my salad, that I'm sniffling and have a scratchy throat by the time I walk out...I'm not sure if it's the croutons, though, or the chlorinated water, or possibly both...the

effect does diminish if I avoid having water while eating out. On the other hand, GF breads/crackers really do make my stomach hurt! I swear, someday I'm going to end up unable to digest anything but green smoothies...Bonnie On Thu, Apr 24, 2008 at 1:34 AM, littlelief <littleliefhotmail> wrote: If you even remotely wonder if you or your child is gluten intolerantand/or a celiac and you're close enough to Chicago - you might want tocheck this out. The Univ. of Chicago offers free screening once a year.http://www.celiacdisease.net/free-blood-screening

[Guest guest]

MSG...uuugh, dont know a whole lot about it except it is a taste

enhancer! It seems to be in so many things, hard to avoid and comes

with many toxin issues. It really irritates me that we have no choice

on wiether they can put this stuff(all toxins/chemicals) in so many

products/food, MSG is even in vaccines! Jennie<><

> If you even remotely wonder if you or your child is

gluten intolerant

> and/or a celiac and you're close enough to Chicago - you might want

to

> check this out. The Univ. of Chicago offers free screening once a

year.

>

> http://www.celiacdisease.net/free-blood-screening

>

[Guest guest]

Oh, I didn't think about that...still, I suspect gluten is an issue, because I'm noticing this at home too with breads/crackers that I know do not contain MSG. I'm sure I would probably react to MSG as well!

Bonnie

Bonnie that could be a MSG problem, croutons are sprinkled with seasoning salt, usually with MSG...............Bonnie Juettner wrote:

Thanks, --I'm going to see if my doctor will test me for this, but if not, I'll phone U of C...it's a long drive for us but we could make it. In all of your research on celiac, did you find out whether a blood test is definitive or not? If the test is negative, does that mean one can stop worrying about it? Because I had heard that sometimes false negatives occur...so I find

myself thinking, well, if I test positive, then I'll know, but if I test negative, then I may not know anything!I've gotten increasingly suspicious about gluten in our diets, especially since we do so much better with sprouted grains...I was reading recently, though I haven't been able to confirm that this is true (I read it on someone's web blog), that sprouting greatly reduces the amount of gluten in grains. If that's true, and we are doing so much better on a low gluten diet, that suggests to me that gluten may be a problem for our family...also, since I've been eating mostly raw foods, it makes it easier for me to detect changes that occur when I do eat something like pasta, or even if I have croutons on a salad in a restaurant. I'm finding that if I eat in a restaurant, and have croutons on my salad, that I'm sniffling and have a scratchy throat by the time I walk out...I'm not sure if it's the croutons, though, or the chlorinated water, or possibly both...the

effect does diminish if I avoid having water while eating out. On the other hand, GF breads/crackers really do make my stomach hurt! I swear, someday I'm going to end up unable to digest anything but green smoothies...

Bonnie

If you even remotely wonder if you or your child is gluten intolerantand/or a celiac and you're close enough to Chicago - you might want to

check this out. The Univ. of Chicago offers free screening once a year.http://www.celiacdisease.net/free-blood-screening

[Guest guest]

Bonnie -- remember we exhanged posts on l-glutamine and glutamate?

It is connected. It's related to how the body makes GABA too and

calcium regulation.

> If you even remotely wonder if you or your child is

gluten intolerant

> and/or a celiac and you're close enough to Chicago - you might want

to

> check this out. The Univ. of Chicago offers free screening once a

year.

>

> http://www.celiacdisease.net/free-blood-screening

>

[Guest guest]

I do remember....hmm. So maybe I should be taking glutamine too? This is getting crazy...I feel like I should be looking for used medical textbooks online! Except that maybe they don't cover this? Do you know of a good source that explains all these connections? I also remember exchanging some posts a long time ago about getting too much information and feeling like one's head is about to explode...I think I'm reaching the " exploding head " point again...

Bonnie

Bonnie -- remember we exhanged posts on l-glutamine and glutamate?

It is connected. It's related to how the body makes GABA too and

calcium regulation.

> If you even remotely wonder if you or your child is

gluten intolerant

> and/or a celiac and you're close enough to Chicago - you might want

to

> check this out. The Univ. of Chicago offers free screening once a

year.

>

> http://www.celiacdisease.net/free-blood-screening

>

[Guest guest]

I'm right with you on the "head explosion".

Deanna,Fort Worth, TexasMom to Cody age 10, Dx: EE, Food Allergies (elimination diet: rye, wheat, soy, and beef), Env. Allergies to mountain cedar and cats, allergic conjunctivitis, and possible GBS (Guillian Barre Syndrome).

Re: Re: Free Celiac screening in Chicago this fall

I do remember.... hmm. So maybe I should be taking glutamine too? This is getting crazy...I feel like I should be looking for used medical textbooks online! Except that maybe they don't cover this? Do you know of a good source that explains all these connections? I also remember exchanging some posts a long time ago about getting too much information and feeling like one's head is about to explode...I think I'm reaching the "exploding head" point again...Bonnie

On Sun, Apr 27, 2008 at 1:29 PM, mommtlc <oldworldtile@ yahoo.com> wrote:

Bonnie -- remember we exhanged posts on l-glutamine and glutamate? It is connected. It's related to how the body makes GABA too and calcium regulation.

> If you even remotely wonder if you or your child is gluten intolerant> and/or a celiac and you're close enough to Chicago - you might want to> check this out. The Univ. of Chicago offers free screening once a year.> > http://www.celiacdi sease.net/ free-blood- screening>