New to CD and questions about preschool

[Guest guest]

Hi,

I have not been diagnosed with celiac disease, although I had the IgA

test and a half-ass endoscopy done. I was sick a lot as a child, and

over the past year and a half, I have been so sick I thought I would

surely die. I tried a TED, but I didn't really eliminate gluten as

well as I should have, so I assumed it wasn't CD or GI. I continued

to get very ill and doctor's want to shove every conceivable object

into every nook and cranny of my body. They say I may just always be

sick, and it could be an anatomical problem or I have IBS or this or

that, and they don't know what the heck is wrong. Doctors appear

poorly trained and can't seem to think outside the box. Finally, I

decided after oing some research, to attempt a REAL gf diet, and

voila. Suddenly, I started to feel better, and as time has worn on,

I've started to feel better than I have in a long time, maybe my

whole life. I still wondered if it was all in my head.

A couple of weeks ago I went to the dentist, and although I'd told

them I could not use latex, they stuck latex gloved hands in my

mouth. Luckily, I noticed and did a rinse and spit. Then, they did it

again a few minutes later! Again with the rinse and spit (boy was I

ANGRY). That night I had a horrible attack. My husband did some

reading, and I guess latex gloves can be dusted with wheat powder to

keep them from sticking together. Also, latex is common cross

reaction for people with CD. My husband made me try something I'd

never done before and he gave me a fast acting Benadryl. An hour

later, the attack waned. I'm now convinced I have CD. I also cannot

have dairy, although the attacks I get from dairy are much less

severe, but still painful (is that because cows eat gluten?). I never

knew how sick I was, till I started to feel better, and now I never

want to go back. The world is full of poison however, which brings me

to my next issue.

My children attend a co-op preschool, and I suspect my kids have CD

or GI, too. The preschool has been so difficult in so many ways (we

do not vaccinate). They use flour for everything! It's in the

playdough which they make from scrtach. They use it to show the kids

how germs spread by sticking it all over their hands and blowing it

through the air. They grind it, bake with it, and so much more. I

broke my leg a couple of years ago, very severely, and now have

limitations as far as what I can do physically, although you wouldn't

know it to look at me. They said they've never had anyone with

limitations before. Hmmn, in 30 yrs?

So how do I approach this issue? My kids and I have not been

diagnosed with anything, and I just know they will ask for some kind

of medical proof, like a note from a doctor. I can't ask the school

to stop flinging gluten products all over the place, can I? The kids

absolutely LOVE it there or I would just pull them out. Any

suggestions? Ideas on how to productively and tactfully approach the

very reluctant school about this? They already think I'm a

troublemakerbecause I refuse to shoot junk into my kids' veins and

they are forcing me to get a TB test, even though I put in a waiver

(I *sometimes* react with a rash to the skin test, and really would

not like to chance it).

Also, I've been wondering if I can get sick from only ingesting

gluten, or can it affect a person with CD just by being in the air?

Thanks for your help!

[Guest guest]

re: TB test - get the blood test! my dr at PAMF wrote a note stating

that it was equivalent to the skin test, and my daughter's elementary

school accepted my blood test results without question (even though

the district says that the skin test is required) (it is a parent

participation school, so all volunteering parents must have a test on

record). i battled our local elementary (before we switched to the

parent participation one) for 3 weeks about accepting the waiver for

my daughter's TB test - they were remarkably dense about the whole

thing (I'd rather wait and get the blood test done on her, but she'd

just had bloodwork done so I told them i'd get it done at her next

blood draw). anyway, i know how you feel - i'm a troublemaker at

school, too, and that's before I bring up gluten... :-/

preschool is tough. we had a somewhat awful time with preschool even

with an official celiac diagnosis for my daughter. a diagnosis does

help, but i still had to go all ADA on them, and then we ended up with

some compromises and rearranging her schedule there so that she wasn't

there on bread making day, for example. we did ELISA food allergy

tests before we discovered CD (well, it led us to discovering CD), and

the kids both showed up as highly reactive to wheat and gluten, so I

approached it with them as a food allergy at first - at least i had

some sort of paperwork that showed it was an issue, yk? IME, school

administrators really want to hear that it is a medical thing, not

just a parent's hunch.

currently, my dd's kindy class bakes pretzels each week (letter of the

week shaped). i watched in horror for the first couple of weeks

because they got flour EVERYWHERE. the third and forth week, she

started complaining of leg pain on pretzel day, before the school day

was out, and it lasted for about 2 days afterward. the first time i

was puzzled, the second time i though aha, gluten. i brought rice

flour in for all of the dusting and handling and asked them to please

not use wheat flour in the class anymore, and we haven't had any

problems since. she still does not participate in the pretzel making

(the dough is made outside of the classroom with wheat flour, and

making the whole thing GF is just bigger than me right now), but

eliminating the widespead wheat dusting really seems to help.

i suppose that technically, they should be the ones to make the

accommodations, but i find that the schools are much more receptive

when i tell them that i'll purchase the special ingredients (like rice

flour). i've also said things such as, " I know you wouldn't be making

peanut butter cookies if you had a nut allergy kid in class, so i

would like the same consideration for my child. " it isn't the same

kind of allergy/reaction, but schools need to understand that just

because it is harder to accommodate doesn't make it ok NOT to

accommodate.

i hope this helps a bit! i'm juggling a baby, sorry if it is a bit disjointed!

-

On Mon, Dec 1, 2008 at 11:01 AM, Lucy Diamonds <panthira@...> wrote:

> Hi,

>

> I have not been diagnosed with celiac disease, although I had the IgA

> test and a half-ass endoscopy done. I was sick a lot as a child, and

> over the past year and a half, I have been so sick I thought I would

> surely die. I tried a TED, but I didn't really eliminate gluten as

> well as I should have, so I assumed it wasn't CD or GI. I continued

> to get very ill and doctor's want to shove every conceivable object

> into every nook and cranny of my body. They say I may just always be

> sick, and it could be an anatomical problem or I have IBS or this or

> that, and they don't know what the heck is wrong. Doctors appear

> poorly trained and can't seem to think outside the box. Finally, I

> decided after oing some research, to attempt a REAL gf diet, and

> voila. Suddenly, I started to feel better, and as time has worn on,

> I've started to feel better than I have in a long time, maybe my

> whole life. I still wondered if it was all in my head.

>

> A couple of weeks ago I went to the dentist, and although I'd told

> them I could not use latex, they stuck latex gloved hands in my

> mouth. Luckily, I noticed and did a rinse and spit. Then, they did it

> again a few minutes later! Again with the rinse and spit (boy was I

> ANGRY). That night I had a horrible attack. My husband did some

> reading, and I guess latex gloves can be dusted with wheat powder to

> keep them from sticking together. Also, latex is common cross

> reaction for people with CD. My husband made me try something I'd

> never done before and he gave me a fast acting Benadryl. An hour

> later, the attack waned. I'm now convinced I have CD. I also cannot

> have dairy, although the attacks I get from dairy are much less

> severe, but still painful (is that because cows eat gluten?). I never

> knew how sick I was, till I started to feel better, and now I never

> want to go back. The world is full of poison however, which brings me

> to my next issue.

>

> My children attend a co-op preschool, and I suspect my kids have CD

> or GI, too. The preschool has been so difficult in so many ways (we

> do not vaccinate). They use flour for everything! It's in the

> playdough which they make from scrtach. They use it to show the kids

> how germs spread by sticking it all over their hands and blowing it

> through the air. They grind it, bake with it, and so much more. I

> broke my leg a couple of years ago, very severely, and now have

> limitations as far as what I can do physically, although you wouldn't

> know it to look at me. They said they've never had anyone with

> limitations before. Hmmn, in 30 yrs?

>

> So how do I approach this issue? My kids and I have not been

> diagnosed with anything, and I just know they will ask for some kind

> of medical proof, like a note from a doctor. I can't ask the school

> to stop flinging gluten products all over the place, can I? The kids

> absolutely LOVE it there or I would just pull them out. Any

> suggestions? Ideas on how to productively and tactfully approach the

> very reluctant school about this? They already think I'm a

> troublemakerbecause I refuse to shoot junk into my kids' veins and

> they are forcing me to get a TB test, even though I put in a waiver

> (I *sometimes* react with a rash to the skin test, and really would

> not like to chance it).

>

> Also, I've been wondering if I can get sick from only ingesting

> gluten, or can it affect a person with CD just by being in the air?

>

> Thanks for your help!

>

>

[Guest guest]

This is just a quick response because while my kids aren't screaming, I'm about to burn our (gf!) dinner... I think this false negative rate you mention is wrong, and I think if you have it and are currently not on a gf diet, it is highly unlikely to get a negative blood test. Having blood taken is certainly not a field day for a young child, but it will help in the long run to have a diagnosis.

I feel for you and for anyone with young children with celiac. And having had lousy experiences at a co-op in SF, I can empathize with how shitty co-ops can make you feel if you are outside their mainstream...

Sorry, I have to run!

Tristan

In a message dated 12/3/08 5:57:07 PM, panthira@... writes:

I would like for my kids to know for sure, but at the

same time, I'm not into making them suffer through procedures with

such a high false negative rate (30-40% I'm told). We definitely need

help.

**************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Are we talking about the CD blood test?

H.

In a message dated 12/3/08 5:57:10 PM, panthira@... writes:

I'm not into making them suffer through procedures with

such a high false negative rate (30-40% I'm told).

**************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Thank you for the response!

Here's the thing. My father had seizures starting as a young child,

and they never knew why he got them. His symptoms were skin blister

like boils, calcifications on the brain, he had tonic seizures, he

was short statured and he easily broke bones, and I could go on and

on. I'm wondering if he actually had celiac disease, as it's more

common for males to show a brain reaction, skipping the intestinal

symptoms. He died in his early 40's from a heart attack during a

seizure.

I wrote the post about my son and his preschool, and then yesterday

he returned to preschool after almost 2 weeks of vacation. During

those 2 weeks, we did not have any gluten in the home and he was GF.

Yesterday, they served cheezits at snack time. By afternoon, he was

crying that his stomach hurt, his face broke out in several spots,

and he had rashes along his torso. He went to the bathroom, and had

blood in his BM. Now, this could be coincidence, or it could be CD, I

don't know.

I know I may not be given the same amount of respect as someone who

has a CD diagnosis, but I KNOW I have it. If I have it, then my son

would have approx. 1 in 22 chance of having it. What am I supposed to

do? Do I feed him gluten with a gut feeling (no pun intended) that it

is harming him? Can I just get a genetic test by cheek swab? My kid

is only 2 yrs old, and I'd rather not have him get an endoscopy, if

the test is positive.

Thank you for your help. We are sort of at a loss, and this is so

stressful.

S.

>

> If the gluten in the air gets into your mouth, then it could affect

someone

> with CD.

>

> Have your children had a CD blood test? That would help you

determine what to

> do about the school situation. Also, following a GF diet is a very

serious,

> life-long commitment. You don't want your children to have to do it

unless

> necessary -- and they may not be willing to stick to it later

unless they have

> proof that it's necessary.

>

> Best wishes.

>

> In a message dated 12/1/08 11:37:09 AM, panthira@... writes:

>

>

> > Also, I've been wondering if I can get sick from only ingesting

> > gluten, or can it affect a person with CD just by being in the

air?

> >

> > Thanks for your help!

> >

>

>

>

>

> **************

> Life should be easier. So should your homepage. Try the NEW

> AOL.com. (http://www.aol.com/?optin=new-

dp & amp;icid=aolcom40vanity & amp;

> ncid=emlcntaolcom00000002)

>

[Guest guest]

While I'm glad to find some commiseration, I'm sorry it has been

challenging for you as well! Our's is also a co-op preschool, and I

just have had issue after issue with regards to our " lifestyle "

choices. The school is surprisingly mainstream and very conservative

feeling in many ways, and I'm an SF native and am not use to that in

the BA, you know?

My kids absolutely love it there, however, and I would feel like the

worst parent ever if I pulled them from their beloved preschool.

I wonder if my kids should take that allergy test. I'm so confused

about what to do to get an official diagnosis. If I even touch my

mouth with hands that have touched flour or gluten products, I get

sick. It's so weird to go your whole life and not make the

connection! I would like for my kids to know for sure, but at the

same time, I'm not into making them suffer through procedures with

such a high false negative rate (30-40% I'm told). We definitely need

help.

The kids are screaming at each other, so i feel your pain about being

disjointed (I didn't think you were btw)!

S.

> > Hi,

> >

> > I have not been diagnosed with celiac disease, although I had the

IgA

> > test and a half-ass endoscopy done. I was sick a lot as a child,

and

> > over the past year and a half, I have been so sick I thought I

would

> > surely die. I tried a TED, but I didn't really eliminate gluten as

> > well as I should have, so I assumed it wasn't CD or GI. I

continued

> > to get very ill and doctor's want to shove every conceivable

object

> > into every nook and cranny of my body. They say I may just always

be

> > sick, and it could be an anatomical problem or I have IBS or this

or

> > that, and they don't know what the heck is wrong. Doctors appear

> > poorly trained and can't seem to think outside the box. Finally, I

> > decided after oing some research, to attempt a REAL gf diet, and

> > voila. Suddenly, I started to feel better, and as time has worn

on,

> > I've started to feel better than I have in a long time, maybe my

> > whole life. I still wondered if it was all in my head.

> >

> > A couple of weeks ago I went to the dentist, and although I'd told

> > them I could not use latex, they stuck latex gloved hands in my

> > mouth. Luckily, I noticed and did a rinse and spit. Then, they

did it

> > again a few minutes later! Again with the rinse and spit (boy was

I

> > ANGRY). That night I had a horrible attack. My husband did some

> > reading, and I guess latex gloves can be dusted with wheat powder

to

> > keep them from sticking together. Also, latex is common cross

> > reaction for people with CD. My husband made me try something I'd

> > never done before and he gave me a fast acting Benadryl. An hour

> > later, the attack waned. I'm now convinced I have CD. I also

cannot

> > have dairy, although the attacks I get from dairy are much less

> > severe, but still painful (is that because cows eat gluten?). I

never

> > knew how sick I was, till I started to feel better, and now I

never

> > want to go back. The world is full of poison however, which

brings me

> > to my next issue.

> >

> > My children attend a co-op preschool, and I suspect my kids have

CD

> > or GI, too. The preschool has been so difficult in so many ways

(we

> > do not vaccinate). They use flour for everything! It's in the

> > playdough which they make from scrtach. They use it to show the

kids

> > how germs spread by sticking it all over their hands and blowing

it

> > through the air. They grind it, bake with it, and so much more. I

> > broke my leg a couple of years ago, very severely, and now have

> > limitations as far as what I can do physically, although you

wouldn't

> > know it to look at me. They said they've never had anyone with

> > limitations before. Hmmn, in 30 yrs?

> >

> > So how do I approach this issue? My kids and I have not been

> > diagnosed with anything, and I just know they will ask for some

kind

> > of medical proof, like a note from a doctor. I can't ask the

school

> > to stop flinging gluten products all over the place, can I? The

kids

> > absolutely LOVE it there or I would just pull them out. Any

> > suggestions? Ideas on how to productively and tactfully approach

the

> > very reluctant school about this? They already think I'm a

> > troublemakerbecause I refuse to shoot junk into my kids' veins and

> > they are forcing me to get a TB test, even though I put in a

waiver

> > (I *sometimes* react with a rash to the skin test, and really

would

> > not like to chance it).

> >

> > Also, I've been wondering if I can get sick from only ingesting

> > gluten, or can it affect a person with CD just by being in the

air?

> >

> > Thanks for your help!

> >

> >

>

[Guest guest]

Hi--

It sounds like your father likely did have undiagnosed celiac disease. Among

(many) other things it can cause calcifications in the brain, which the

pediatric neurologist looked for with my celiac daughter because she had stopped

walking and talking.

You can certainly do a non-invasive genetic test instead of an endoscopy. Also,

since your son has only been off gluten 2 weeks, you might see if your

pediatrician (or GI) will order the blood tests. I would think he would still

have the antibodies in his blood if he's positive.

Good luck--

________________________________________

From: [ ] On Behalf Of

Lucy Diamonds [panthira@...]

Sent: Wednesday, December 03, 2008 5:45 PM

Subject: [ ] Re: New to CD and questions about preschool

Thank you for the response!

Here's the thing. My father had seizures starting as a young child,

and they never knew why he got them. His symptoms were skin blister

like boils, calcifications on the brain, he had tonic seizures, he

was short statured and he easily broke bones, and I could go on and

on. I'm wondering if he actually had celiac disease, as it's more

common for males to show a brain reaction, skipping the intestinal

symptoms. He died in his early 40's from a heart attack during a

seizure.

I wrote the post about my son and his preschool, and then yesterday

he returned to preschool after almost 2 weeks of vacation. During

those 2 weeks, we did not have any gluten in the home and he was GF.

Yesterday, they served cheezits at snack time. By afternoon, he was

crying that his stomach hurt, his face broke out in several spots,

and he had rashes along his torso. He went to the bathroom, and had

blood in his BM. Now, this could be coincidence, or it could be CD, I

don't know.

I know I may not be given the same amount of respect as someone who

has a CD diagnosis, but I KNOW I have it. If I have it, then my son

would have approx. 1 in 22 chance of having it. What am I supposed to

do? Do I feed him gluten with a gut feeling (no pun intended) that it

is harming him? Can I just get a genetic test by cheek swab? My kid

is only 2 yrs old, and I'd rather not have him get an endoscopy, if

the test is positive.

Thank you for your help. We are sort of at a loss, and this is so

stressful.

S.

>

> If the gluten in the air gets into your mouth, then it could affect

someone

> with CD.

>

> Have your children had a CD blood test? That would help you

determine what to

> do about the school situation. Also, following a GF diet is a very

serious,

> life-long commitment. You don't want your children to have to do it

unless

> necessary -- and they may not be willing to stick to it later

unless they have

> proof that it's necessary.

>

> Best wishes.

>

> In a message dated 12/1/08 11:37:09 AM, panthira@... writes:

>

>

> > Also, I've been wondering if I can get sick from only ingesting

> > gluten, or can it affect a person with CD just by being in the

air?

> >

> > Thanks for your help!

> >

>

>

>

>

> **************

> Life should be easier. So should your homepage. Try the NEW

> AOL.com. (http://www.aol.com/?optin=new-

dp & amp;icid=aolcom40vanity & amp;

> ncid=emlcntaolcom00000002)

>

[Guest guest]

Ok, just for fun, here's how we ended up with a diagnosis. I hope

this helps a bit...

My baby had some fairly brutal eczema, so I decided to test him for

food allergies. After reading waaaay too much about it, I decided to

go with Wacky Internet Tests (ELISA), rather than RAST or something

that insurance might actually cover. We used Meridian Valley Labs -

http://www.meridianvalleylab.com/allergy_dept.html You call and order

the test, they send you instructions and vials, get a doctor to write

a prescription for the blood draw, then the lab sends your sample in

via FedEx. It cost about $125 per panel (they offer 2, we did both),

and took a few weeks to get results. The baby showed some moderate

reactions to most every food he had ever eaten (he was all of 9 months

old at this point), but was off the charts high for wheat, gluten,

gliadin, and triticale. Hmmm.

I'd had some nebulous concerns about my daughter (then 4 years old)

and decided that maybe food allergies explained it all for her, so I

did the same tests. Got similar results (though fewer reactions on

other foods, higher on wheat etc).

Did a whole lot of reading, asked for a Celiac panel on her.

Pediatrician said oh, no, let's just wait and see, no harm in waiting.

Did a gluten free trial for several weeks, so no changes in her.

(She has never been a " typically " symptomatic Celiac, though - I have

little doubt that she would have gone undiagnosed for years, if not

decades, if we hadn't happened upon that food allergy test.)

Went to a pediatric allergist at PAMF. He looked at our ELISA

results, said, well, we just don't know much about these tests, but I

wouldn't give them much weight if you didn't see a huge difference

when you did a GF trial with her. I asked for a Celiac panel, he

finally agreed, but said he was pretty sure it was not worth testing.

He called me a few days later, quite surprised, and said her panel

came back positive.

Fired pediatrician, got an appointment with the LCPH GI Clinic. Put

her back on gluten, got an endoscopy done a month and a half later.

Also had blood drawn for the RAST food allergy test at this point -

came back completely clear, as in she has no food allergies. Very

glad we went with ELISA tests initially. Biopsy came back positive

(she was also quite anemic at this point).

The baby's celiac panel was inconclusive - low overall IgA, and he was

also very anemic. We'll retest overall IgA in a while, and if it is

up, do a gluten challenge and more testing. I've had him gluten free

all of this time (he's nearly 2 now) as a precautionary measure, I

suppose, but the fact that their allergy test profiles matched up so

well really makes me think he has it. I did the cheek swab genetic

test on him through Kimball Genetics, and he has both Celiac genes,

also. Our GI has said they'll officially diagnose him if he has a

positive bloodtest (without the biopsy) since we have so much

supporting evidence at this point.

Also, the blood draws on babies/toddlers SUCK. There's no way around

that. It was an awful 5 minutes for all of us. My kids had very

little medical intervention in their lives up until that point, so I

didn't go into this lightly. To learn what we did from those

bloodtests, though, was completely worth it. I'd absolutely do it

again. (I'd also stick to the LCPH lab if you're anywhere around

there - they're good.)

From what I have read, the current Celiac panel actually has a very

high rate of accuracy. It has been awhile since I did all the

research, but several of the components of that test were considered

extremely reliable (90-98%) for diagnosing Celiac. You could start

with the cheek swab if you want to rule it out before you do bloodwork

(the genetic test was around $350).

And this completes my novel! I hope that was a tiny bit helpful.

-

On Wed, Dec 3, 2008 at 5:56 PM, Lucy Diamonds <panthira@...> wrote:

> I wonder if my kids should take that allergy test. I'm so confused

> about what to do to get an official diagnosis. If I even touch my

> mouth with hands that have touched flour or gluten products, I get

> sick. It's so weird to go your whole life and not make the

> connection! I would like for my kids to know for sure, but at the

> same time, I'm not into making them suffer through procedures with

> such a high false negative rate (30-40% I'm told). We definitely need

> help.

>

> The kids are screaming at each other, so i feel your pain about being

> disjointed (I didn't think you were btw)!

>

> S.

>

[Guest guest]

Ahem.

LPCH, as in Lucille Packard Children's Hospital, not LCPH.

:-/

[Guest guest]

Celiac is not an allergy. No allergy test would tell you if your child is

celiac. A gene test will not tell you if the child is celiac, all it tells you

is the **potential** to be celiac.

What test do you think has a " high false negative rate (30-40% I'm told)? " I've

never heard numbers anywhere near that for the currently used tests, especially

endoscopies.

Maureen

> From: Lucy Diamonds <panthira@...>

> Subject: [ ] Re: New to CD and questions about preschool

>

> Date: Wednesday, December 3, 2008, 5:56 PM

> While I'm glad to find some commiseration, I'm sorry it has been

> challenging for you as well! Our's is also a co-op preschool, and I

> just have had issue after issue with regards to our " lifestyle "

> choices. The school is surprisingly mainstream and very conservative

> feeling in many ways, and I'm an SF native and am not use to that in

> the BA, you know?

> My kids absolutely love it there, however, and I would feel like the

> worst parent ever if I pulled them from their beloved preschool.

>

> I wonder if my kids should take that allergy test. I'm so confused

> about what to do to get an official diagnosis. If I even touch my

> mouth with hands that have touched flour or gluten products, I get

> sick. It's so weird to go your whole life and not make the

> connection! I would like for my kids to know for sure, but at the

> same time, I'm not into making them suffer through procedures with

> such a high false negative rate (30-40% I'm told). We definitely need

> help.

>

[Guest guest]

Sorry, I meant to post this too:

In clinical trials, the IgA antibodies have a specificity of 97% but

the sensitivity is only 71%. That means that, if a patient is IgA

positive, there is a 97% probability that they have celiac disease.

Conversely, if the patient is IgA negative, there is only a 71%

probability that the patient is truly negative for celiac disease.

Therefore, a positive result is a strong indication that the patient

has the disease but a negative result does not necessarily mean that

they don not have it. False positive results are rather uncommon but

false negative results can occur.

> >

> > Are we talking about the CD blood test?

> > H.

> >

> > In a message dated 12/3/08 5:57:10 PM, panthira@ writes:

> >

> >

> > > I'm not into making them suffer through procedures with

> > > such a high false negative rate (30-40% I'm told).

> > >

> >

> >

> >

> >

> > **************

> > Make your life easier with all your friends, email, and

> > favorite sites in one place. Try it now. (http://www.aol.com/?

> optin=new-dp & amp;

> > icid=aolcom40vanity & amp;ncid=emlcntaolcom00000010)

> >

>

[Guest guest]

Lucy,

I feel your pain about getting properly diagnosed.

Might I ask what you actually had tested previously and what your results were? How much gluten were you eating at the time of the test? IgA tends to be more transient (like a shorter term immune response) while IgG has longer memory. Some say that IgA antibodies should last no more than 6 months after an exposure.

In my experience the celiac blood test (both IgA and IgG anti-gliadin) is pretty accurate. The RAST blood test and the allergy skin prick test, of course, should be negative for most Celiacs since they only test for IgE or the type I allergy response (hives, throat swelling, histamine, etc). The endoscopy is not only invasive and uncomfortable but is supposedly spotty (pun intended) depending on the doctor and the area of intestine sampled.

FYI on the tests:

Prometheus Celiac Serology Test: 5-marker serology panel (Anti-human tissue transglutaminase IgA, Anti-endomysial IgA, Total Serum IgA, Anti-gliadin IgA, Anti-gliadin IgG).

Quest Celiac panel:

•

Tissue Transglutaminase (tTG) Antibody, IgA

•

Gliadin Antibody, IgA

•

Total IgA

•

Endomysial Antibody (EMA) Screen, IgA- performed (at additional charge) when the anti-tTG IgA is positive

•

EMA Titer-performed (at additional charge) when the EMA screen is positive

•

tTG Antibody, IgG-performed (at additional charge) when total IgA is low

What is interesting about this is that Quest never does an IgG anti-gliadin, and their whole test depends on the anti-tTG IGA being positive, which it may not in some people. I would go with Prometheus. If you are positive at all on that test, and you feel better on a gluten-free diet, and a trial period of eating gluten again makes you sick, then I would say you have a complete diagnosis! No need for an endoscopy.

Can you explain what you mean by the alpha and the beta portions?

Best,

From: Lucy Diamonds <panthira@...> Sent: Thursday, December 4, 2008 12:36:12 PMSubject: [ ] Re: New to CD and questions about preschool

I am aware of the allergy and genetic testing not showing you have celiac. The high false negative rate was told to me by a Stanford GI specialist, and it was about endoscopy rates, I guess. He was telling me that the doctor who did my endoscopy likely saw I had gastritis, and just assumed he had the answer. He said it was caused by my gall bladder being removed, and I would always have it and have to take antacids forever. The GI doctor at Stanford said he doubts from what I told him, that the doctor did a decent biopsy from several places in my intestines, and likely missed any evidence. That's where I got the high rate. It really depends on the doctor doing the investigating, and many many doctors don't seem to understand celiac disease.One thing I hate: I feel like I've been given new life by going GF. However, it's like most people think I'm making it up since I don't have a true

diagnosis. I'm considering getting my son tested by my family doctor, but they use Quest, which is what I used, before I understood that that lab only tests for PART of the immune response. Also making that lab have a high false negative rate. I'll have to request Kimball or Prometheus labs, if possible. > > > From: Lucy Diamonds <panthira@.. .>> > Subject: [ ] Re: New to CD and questions about preschool> > > > Date: Wednesday, December 3, 2008, 5:56 PM> > While I'm glad to find some commiseration, I'm sorry it has been > > challenging for you as well! Our's is also a co-op preschool, and I > > just have had issue after issue with regards to our "lifestyle" > > choices. The school is surprisingly mainstream and very conservative > > feeling in many ways, and I'm an SF native and am not use to that in > > the BA, you

know?> > My kids absolutely love it there, however, and I would feel like the > > worst parent ever if I pulled them from their beloved preschool.> > > > I wonder if my kids should take that allergy test. I'm so confused > > about what to do to get an official diagnosis. If I even touch my > > mouth with hands that have touched flour or gluten products, I get > > sick. It's so weird to go your whole life and not make the > > connection! I would like for my kids to know for sure, but at the > > same time, I'm not into making them suffer through procedures with > > such a high false negative rate (30-40% I'm told). We definitely need > > help.> >>

[Guest guest]

I just wanted to clarify a little bit, since I brought up food allergy

testing. The food allergy tests that we did measure both IgE and IgG

antibodies, so while it didn't tell us that the kids were Celiac,

getting a high reading for IgG (anti) Gliadin as part of that testing

certainly pointed us in that direction (since that is one of the tests

that is part of the Celiac panel). And yeah, from what I understand,

the genetic test is just good for ruling out Celiac.

http://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-\

Results/Page1.html

has lots of facts and figures to ponder...

-

On Wed, Dec 3, 2008 at 11:11 PM, Marciana R <marcianar@...> wrote:

> Celiac is not an allergy. No allergy test would tell you if your child is

> celiac. A gene test will not tell you if the child is celiac, all it tells

> you is the **potential** to be celiac.

>

[Guest guest]

I had the Quest antibody test. I don't know what the results were, as

my doctor told me it came out negative. I think i might have seen the

results, but I had no idea what I was looking at at the time.

Everything was within normal range, except for slightly elevated

liver enzyme levels (ahem). I had an endoscopy, but the doctor just

went into the duodendum opening, I suspect because I have pictures as

he went in there. he saw gastritis and just assumed it was happening

because I'd had my gall bladder out 2 yrs prior. He said 20% of

people who've had their GBs out have this gastritis and constant

diarrhea, terrible stomach pain, pancreatitis attacks becoming more

frequent, distended stomach, skin issues, tired all of the time,

aching joints, and I could go on and on.

I cannot eat gluten, even for a test. Something happened after my

last baby in summer of 2007, and my body won't tolerate it at ALL

anymore. The last 2 times I had an exposure led to pancreatitis

attacks, which can be fatal. The only test I haven't had is the

genetic test, but again, 35% of people have the gene. I think my next

step is getting more info from the doctor who did the endoscopy. The

day I had one, it was like a meat market line-up, so I think

endoscopies are his way of making easy money. I don't think he cares

much at reaching a true diagnosis.

What is the EMA Titer that Prometheus does?

I scheduled appts for my children, and the first one is next week.

I'm wondering if I should load her with gluten before she goes for

the test?

Thanks!

> >

> > > From: Lucy Diamonds <panthira@ .>

> > > Subject: [ ] Re: New to CD and questions about

> preschool

> > >

> > > Date: Wednesday, December 3, 2008, 5:56 PM

> > > While I'm glad to find some commiseration, I'm sorry it has

been

> > > challenging for you as well! Our's is also a co-op preschool,

> and I

> > > just have had issue after issue with regards to our " lifestyle "

> > > choices. The school is surprisingly mainstream and very

> conservative

> > > feeling in many ways, and I'm an SF native and am not use to

> that in

> > > the BA, you know?

> > > My kids absolutely love it there, however, and I would feel

like

> the

> > > worst parent ever if I pulled them from their beloved preschool.

> > >

> > > I wonder if my kids should take that allergy test. I'm so

> confused

> > > about what to do to get an official diagnosis. If I even touch

> my

> > > mouth with hands that have touched flour or gluten products, I

> get

> > > sick. It's so weird to go your whole life and not make the

> > > connection! I would like for my kids to know for sure, but at

> the

> > > same time, I'm not into making them suffer through procedures

> with

> > > such a high false negative rate (30-40% I'm told). We

definitely

> need

> > > help.

> > >

> >

>