New to CD and questions about preschool

[Guest guest]

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]

Wow, you went through a long process! Thank you for sharing all of

that. It looks so daunting to me.

>

> > 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]

Depending on the lab you use, I'm told. Here is some info I found:

Laboratories in the U.S. that are known to offer complete alpha and

beta subunit genetic testing include Kimball Genetics, Prometheus,

and LabCorp. Bonfils, Quest and Enterolab only test for the beta

subunit portions and may miss part of a minor alpha subunit that

carries a risk of celiac disease.

>

> 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]

, I'm impressed at the breadth of your knowledge and grateful to you for taking the time to share it.

H.**************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]

Regarding a gluten challenge before testing, It sounds like your

children (or at least one of them )have been GF or at least partly GF for a

while. If this is so, I would urge caution before giving them lots of

gluten, especially considering the reaction your son suffered after accidental

exposure.

First, if they have been GF, 1 week of gluten may not be enough

to develop sufficient antibodies in the blood to show up on the test. It

seems to vary between individuals (as well as drs. opinions) as to how long is

necessary for a gluten challenge. After several years GF, my husband once

ate gluten for 3 weeks and tested negative. At 6 months he started

feeling sick. At 9 months he retested as positive. If your kids have

had some gluten all along, however, that may have been enough to keep the antibodies

active. Even so, having been on a GF diet will cast doubts on the results

if the test is negative.

Second, if you do a gluten challenge, ramp up the gluten

slowly, and back off if the reaction becomes severe. No one should ever

force themselves to eat gluten if it is making them very sick, even if the

doctor insists. I know two people who did this; one now has Hashimoto’s

Thyroid disease and the other is very, very sick. I don’t mean to

scare anyone, just to make people aware of possibilities. I have heard of

many who have done a gluten challenge without incident, but for others it can

create lasting problems.

Another option to consider for testing is an absorption

test. This is NOT specific to celiac disease, but if malabsorption is occurring,

it can give an indication that the problem is in the small intestine and that

the possibility of celiac exists (and if celiac is not the diagnosis, then the

question becomes finding the reason for the malabsorption). The benefit

of the absorption test is that intestinal damage will show up before the

antibodies appear in the blood. Also, depending on which kind of test is

used, it can be less intrusive than a blood test. In conjunction with a

genetic test for celiac disease this can indicate a strong possibility for

celiac disease where other tests are inconclusive or undesirable.

This is not medical advice and is meant to help you when

discussing care with your medical professional.

Pam Newbury

From:

[mailto: ] On

Behalf Of Lucy Diamonds

Sent: Thursday, December 04, 2008 7:57 PM

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

…

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!

[Guest guest]

Hi Lucy,

Sounds like you already have your own diagnosis. You feel awful when you eat gluten, and good when you don't. You know that it is not worth it for you to eat more gluten just to prove to other people that your disease is real. You could still do the Prometheus test without going back on gluten, the IgG anti-gliadin should still be high even if you have not eaten it recently. But don't depend on it. You already have your answer - stay away from gluten!

I went through the same thing. I had a positive blood test at about 6 months nearly gluten-free (which I had requested, in detail, two years after getting sick) but the doctors wanted me to do an endoscopy "to confirm the diagnosis". I could never get myself to do it. Going back on gluten, eating a slice of bread each day for weeks, would have meant a several-month leave of absence from grad school and would have required my mother to travel across the country to take care of me. I had just emerged from that hell and was not going back. For two years I told the docs that I would do the endoscopy "when I can just find 3 months to kill". Then, I realized that I did not need the test. I had already figured out what was wrong with me and as long as I stayed very far away from gluten, I was fine. And every time I accidentally got glutened I was miserably sick.

As for people not believing you, what is most important is confidence. Once I finally accepted the fact that I had Celiac, was never going to eat my favorite pasta or cookies again, it was much better. I just told people - I have Celiac. End of story. the best evidence for them was my own clarity about it and my regained health. These days when I go to a doctor, same thing - I just tell them that I have Celiac. Not one has ever questioned me about it or asked for my test results. Because of graduation, job changes, and moving, I have had multiple health plans and new primary care physicians, so the old days of diagnosis are well behind me.

As for the EMA titer, my guess is that first they do a quick-and-dirty screen, the EMA screen (not sure about the details, they don't explain) to get a positive hit for the EMA antibody, then if you are positive they do a more sensitive (and expensive test), to test to see how high the EMA antibody level is.

As for loading up your kids with gluten before the test, see Pam's post. Well done, Pam! The only thing to add about testing is to emphasize that negative results from tests while not eating gluten may not be accurate. Hence the good advice from medical circles to test before launching a g-f diet. Great advice in hingsight!

Best,

From: Lucy Diamonds <panthira@...> Sent: Thursday, December 4, 2008 7:56:35 PMSubject: [ ] Re: New to CD and questions about preschool

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.> > >> >>

[Guest guest]

Yes, yes, yes! I developed CD at about 60, after having developed another autoimmune disease, one with more immediately serious possible consequences.

Or, it's possible that the CD came before the other, potentially fatal AD. Undiagnosed for a year or so, it could have been the trigger for the AD that attacks my liver.

One must be watchful throughout one's lifetime.

H.

In a message dated 12/5/08 12:13:18 PM, pixie@... writes:

'd like to just add a comment to this thread that even if a person (particularly a child) tests

negative *now*, that doesn't mean he or she won't develop active celiac disease later on.

**************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]

I'd like to just add a comment to this thread that even if a person

(particularly a child) tests

negative *now*, that doesn't mean he or she won't develop active celiac disease

later on. I

have CD (as do my mom and sister). Because of some issues my 2-year-old son was

having, he had both the celiac antibody screen test and the upper endoscopy,

both of

which he tested negative for. However, the pediatric GI doctor made it very

clear that does

NOT mean he is clear for life, and that if we suspect anything down the road, we

should

get him tested again.

Good luck with the testing in your family.

kristin

>

> 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!

>

> --- In , <kristin_boston@>

[Guest guest]

Pam,

This is all interesting, thank you. Can you say more about the absorption test?

That kind of test is it? Who administers it?

Thank you!

Marci

> From: Pam Newbury <pknewbury@...>

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

>

> Date: Thursday, December 4, 2008, 11:02 PM

> Regarding a gluten challenge before testing, It sounds like

> your children

> (or at least one of them )have been GF or at least partly

> GF for a while.

> If this is so, I would urge caution before giving them lots

> of gluten,

> especially considering the reaction your son suffered after

> accidental

> exposure.

>

>

>

> First, if they have been GF, 1 week of gluten may not be

> enough to develop

> sufficient antibodies in the blood to show up on the test.

> It seems to vary

> between individuals (as well as drs. opinions) as to how

> long is necessary

> for a gluten challenge. After several years GF, my husband

> once ate gluten

> for 3 weeks and tested negative. At 6 months he started

> feeling sick. At 9

> months he retested as positive. If your kids have had some

> gluten all

> along, however, that may have been enough to keep the

> antibodies active.

> Even so, having been on a GF diet will cast doubts on the

> results if the

> test is negative.

>

>

>

> Second, if you do a gluten challenge, ramp up the gluten

> slowly, and back

> off if the reaction becomes severe. No one should ever

> force themselves to

> eat gluten if it is making them very sick, even if the

> doctor insists. I

> know two people who did this; one now has Hashimoto's

> Thyroid disease and

> the other is very, very sick. I don't mean to scare

> anyone, just to make

> people aware of possibilities. I have heard of many who

> have done a gluten

> challenge without incident, but for others it can create

> lasting problems.

>

>

>

> Another option to consider for testing is an absorption

> test. This is NOT

> specific to celiac disease, but if malabsorption is

> occurring, it can give

> an indication that the problem is in the small intestine

> and that the

> possibility of celiac exists (and if celiac is not the

> diagnosis, then the

> question becomes finding the reason for the malabsorption).

> The benefit of

> the absorption test is that intestinal damage will show up

> before the

> antibodies appear in the blood. Also, depending on which

> kind of test is

> used, it can be less intrusive than a blood test. In

> conjunction with a

> genetic test for celiac disease this can indicate a strong

> possibility for

> celiac disease where other tests are inconclusive or

> undesirable.

>

>

>

> This is not medical advice and is meant to help you when

> discussing care

> with your medical professional.

>

>

>

> Pam Newbury

>

>

>

> From:

> [mailto: ]

> On Behalf Of Lucy Diamonds

> Sent: Thursday, December 04, 2008 7:57 PM

>

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

> preschool

>

>

>

> .

> 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!