Re: length of gluten challenge?

[Guest guest]

Hi ,

You mean you've eaten gf for 2.5 years but weren't diagnosed as a celiac

beforehand? (just clarifying)

If so, GIs would probably want to put you on gluten for a few weeks or even a

month before doing a biopsy.

If you have celiac disease and are like my daughter, that wouldn't be necessary.

One mouthful of gluten and you'd have your unofficial but clear diagnosis. You

could try that approach first and see how you feel.

--lp

________________________________________

From: [ ] On Behalf Of

[beznadan@...]

Sent: Saturday, October 09, 2010 8:48 PM

Subject: [ ] length of gluten challenge?

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

[Guest guest]

, I would be careful about doing a gluten challenge. I have been told by quite a few people that they got very sick and others told me that the challenge triggered other immune diseases. Don't know any more specifics, unfortunately.Take care,CarynOn Oct 9, 2010, at 8:48 PM, wrote: I'm finding quite a range of answers online - does anyone have any somewhat recent experience or input from a GI about this? I have been GF for about 2.5 years (since my kids were diagnosed) and would like to get tested. Thanks -

[Guest guest]

I too have been advised to do a gluten challenge.I will not. I had a positive blood test. My daughter has celiac.Looking at my whole life- celiac makes perfect sense.I am not going to do it.That is just my story.Good luck!Sent from my iPhoneK8 On Oct 9, 2010, at 9:26 PM, Caryn Gottfried <caryn777@...> wrote:

, I would be careful about doing a gluten challenge. I have been told by quite a few people that they got very sick and others told me that the challenge triggered other immune diseases. Don't know any more specifics, unfortunately.Take care,CarynOn Oct 9, 2010, at 8:48 PM, wrote: I'm finding quite a range of answers online - does anyone have any somewhat recent experience or input from a GI about this? I have been GF for about 2.5 years (since my kids were diagnosed) and would like to get tested. Thanks -

[Guest guest]

Correct - I wasn't tested until I'd already been off gluten for about

8 months (on behalf of my nursing baby). The test was negative at

that point, but was obviously not a valid test. We keep a gluten free

household and don't eat out all that often, but now that my youngest

is in preschool, it is easier/more tempting for me to eat gluten a few

days a week, and so I'd like to challenge and have a Celiac panel run.

I do not react to gluten in any obvious way, but then, neither does

my biopsy diagnosed daughter (and I do have one of the genes). I've

been eating about one serving per day, 4 days a week for the past

month with a 6 week challenge in mind, but after some internet

research, I'm questioning if that's enough and was wondering if anyone

had specifics. I'm not seeing a GI, since I don't really have GI

issues at this point - I'll just have my primary care dr order the

labs.

Thanks

-

On Sat, Oct 9, 2010 at 8:59 PM, Palmer, <palmer@...> wrote:

> Hi ,

>

> You mean you've eaten gf for 2.5 years but weren't diagnosed as a celiac

beforehand?  (just clarifying)

>

> If so, GIs would probably want to put you on gluten for a few weeks or even a

month before doing a biopsy.

>

> If you have celiac disease and are like my daughter, that wouldn't be

necessary. One mouthful of gluten and you'd have your unofficial but clear

diagnosis.  You could try that approach first and see how you feel.

>

> --lp

> ________________________________________

> From: [ ] On Behalf

Of [beznadan@...]

> Sent: Saturday, October 09, 2010 8:48 PM

>

> Subject: [ ] length of gluten challenge?

>

> I'm finding quite a range of answers online - does anyone have any

> somewhat recent experience or input from a GI about this? I have

> been GF for about 2.5 years (since my kids were diagnosed) and would

> like to get tested.

> Thanks

> -

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

I did a gluten challenge for 5 weeks.  Based on how sick I was from the challenge (i.e., barely able to function), my GI doc determined that it had been long enough.  He did not do blood work, and my biopsy was negative.  I have since been to the Stanford Celiac Clinic, who reviewed my biopsy.  The agreed that it was negative, but the GI who did the biopsy took only one sample - not the 6 - 8 that the Celiac Center would have taken, and therefore, unreliable.  My advice is, if you are going to do a gluten challenge, do it with a doc with sufficient experience to do it right.

Also, I am one of those who is sicker after gluten challenge than I was before.  I have never regained my energy and other auto-immunue diseases increased in severity.  Think about how badly you want a diagnosis and why.  

Best of luck, On Sat, Oct 9, 2010 at 8:48 PM, <beznadan@...> wrote:

 

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

[Guest guest]

What you need is a DNA test.  The test is for markers DQ2 and DQ8.  From my understanding, it is not exactly perfect, because having both markers doesn't exactly mean you have CD.  But without either marker, you can't have CD.  Because it is a DNA test, you don't have to go back on gluten.

On Sat, Oct 9, 2010 at 9:58 PM, Noviello <cgnoviello@...> wrote:

 

I did a gluten challenge for 5 weeks.  Based on how sick I was from the challenge (i.e., barely able to function), my GI doc determined that it had been long enough.  He did not do blood work, and my biopsy was negative.  I have since been to the Stanford Celiac Clinic, who reviewed my biopsy.  The agreed that it was negative, but the GI who did the biopsy took only one sample - not the 6 - 8 that the Celiac Center would have taken, and therefore, unreliable.  My advice is, if you are going to do a gluten challenge, do it with a doc with sufficient experience to do it right.

Also, I am one of those who is sicker after gluten challenge than I was before.  I have never regained my energy and other auto-immunue diseases increased in severity.  Think about how badly you want a diagnosis and why.  

Best of luck, On Sat, Oct 9, 2010 at 8:48 PM, <beznadan@...> wrote:

 

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

[Guest guest]

To be more specific, there are several alleles (configurations) of HLA types DQ2 and DQ8. About 40% of the population has one of these alleles, yet only about 1% has celiac disease. At least 99% of people with celiac disease have one of these alleles, yet the reverse is not true, since the vast majority of people with those alleles do NOT have celiac. Therefore this is clearly not a diagnostic test, but as Michie says, it is useful to rule out celiac almost completely. For instance, one of my daughters has a couple DQ2 alleles but does not have celiac. She's at risk to get it (higher risk than the general population since her sister has it), but she may never get it. If she didn't have any DQ2 or DQ8 alleles at all, we could pretty safely stop screening her for celiac. You'd need to decide whether it's worth the approx $400 for the chance to rule out celiac, without being able to diagnose it. Even if you ruled it out, you'd still know you had to avoid gluten in order to feel well. So your point about thinking about whether a diagnosis is worth it is a very good point once you've already gone GF for a while. And you're right that if you do have an endoscopy, make sure a doctor trained in finding celiac damage does the biopsy.I'm so sorry to hear you feel worse now than before. I hope you feel better with a bit more time.Best wishes,On Oct 10, 2010, at 9:27 PM, Michie Page wrote:

What you need is a DNA test. The test is for markers DQ2 and DQ8. From my understanding, it is not exactly perfect, because having both markers doesn't exactly mean you have CD. But without either marker, you can't have CD. Because it is a DNA test, you don't have to go back on gluten.

On Sat, Oct 9, 2010 at 9:58 PM, Noviello <cgnoviello@...> wrote:

I did a gluten challenge for 5 weeks. Based on how sick I was from the challenge (i.e., barely able to function), my GI doc determined that it had been long enough. He did not do blood work, and my biopsy was negative. I have since been to the Stanford Celiac Clinic, who reviewed my biopsy. The agreed that it was negative, but the GI who did the biopsy took only one sample - not the 6 - 8 that the Celiac Center would have taken, and therefore, unreliable. My advice is, if you are going to do a gluten challenge, do it with a doc with sufficient experience to do it right.

Also, I am one of those who is sicker after gluten challenge than I was before. I have never regained my energy and other auto-immunue diseases increased in severity. Think about how badly you want a diagnosis and why.

Best of luck, On Sat, Oct 9, 2010 at 8:48 PM, <beznadan@...> wrote:

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

Darcyddarcy@...

[Guest guest]

I've had the DNA test, and I have one of the markers.  To clarify a bit more, I don't necessarily think I have Celiac disease, but I realize the potential is there.  Since my family seems to be mostly nonreactive, I'm concerned that I could potentially have it, not realize it, and eat gluten casually and cause all sorts of damage.    I'd like to eat enough gluten to get a definitive test result, so that I can either declare myself a Celiac and go 100% GF again, or declare myself not a Celiac and continue eating gluten casually without worrying that I'm destroying my body.  My casual consumption is about 2-4 servings a week of a gluten containing food, which I'm pretty sure is below the threshold for an accurate test.  I want to know how much I need to step this up so that I can get an accurate test done. 

-On Sun, Oct 10, 2010 at 9:27 PM, Michie Page <gfchef@...> wrote:

 

What you need is a DNA test.  The test is for markers DQ2 and DQ8.  From my understanding, it is not exactly perfect, because having both markers doesn't exactly mean you have CD.  But without either marker, you can't have CD.  Because it is a DNA test, you don't have to go back on gluten.

On Sat, Oct 9, 2010 at 9:58 PM, Noviello <cgnoviello@...> wrote:

 

I did a gluten challenge for 5 weeks.  Based on how sick I was from the challenge (i.e., barely able to function), my GI doc determined that it had been long enough.  He did not do blood work, and my biopsy was negative.  I have since been to the Stanford Celiac Clinic, who reviewed my biopsy.  The agreed that it was negative, but the GI who did the biopsy took only one sample - not the 6 - 8 that the Celiac Center would have taken, and therefore, unreliable.  My advice is, if you are going to do a gluten challenge, do it with a doc with sufficient experience to do it right.

Also, I am one of those who is sicker after gluten challenge than I was before.  I have never regained my energy and other auto-immunue diseases increased in severity.  Think about how badly you want a diagnosis and why.  

Best of luck, On Sat, Oct 9, 2010 at 8:48 PM, <beznadan@...> wrote:

 

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

[Guest guest]

To my understanding, no one in this field yet has good insight into how much gluten it takes and for how long, before a blood test and biopsy will register positive. Since you are already eating gluten, if you can eat gluten and feel fine, then I'd go ahead and eat at least a serving daily (like a bowl of cereal or a sandwich), for 2-3 months or more, then do the blood test. If positive, then have the biopsy. If you do have celiac, you will heal again on the strict GF diet.Best wishes,On Oct 10, 2010, at 11:20 PM, wrote:

I've had the DNA test, and I have one of the markers. To clarify a bit more, I don't necessarily think I have Celiac disease, but I realize the potential is there. Since my family seems to be mostly nonreactive, I'm concerned that I could potentially have it, not realize it, and eat gluten casually and cause all sorts of damage. I'd like to eat enough gluten to get a definitive test result, so that I can either declare myself a Celiac and go 100% GF again, or declare myself not a Celiac and continue eating gluten casually without worrying that I'm destroying my body. My casual consumption is about 2-4 servings a week of a gluten containing food, which I'm pretty sure is below the threshold for an accurate test. I want to know how much I need to step this up so that I can get an accurate test done.

-On Sun, Oct 10, 2010 at 9:27 PM, Michie Page <gfchef@...> wrote:

What you need is a DNA test. The test is for markers DQ2 and DQ8. From my understanding, it is not exactly perfect, because having both markers doesn't exactly mean you have CD. But without either marker, you can't have CD. Because it is a DNA test, you don't have to go back on gluten.

On Sat, Oct 9, 2010 at 9:58 PM, Noviello <cgnoviello@...> wrote:

I did a gluten challenge for 5 weeks. Based on how sick I was from the challenge (i.e., barely able to function), my GI doc determined that it had been long enough. He did not do blood work, and my biopsy was negative. I have since been to the Stanford Celiac Clinic, who reviewed my biopsy. The agreed that it was negative, but the GI who did the biopsy took only one sample - not the 6 - 8 that the Celiac Center would have taken, and therefore, unreliable. My advice is, if you are going to do a gluten challenge, do it with a doc with sufficient experience to do it right.

Also, I am one of those who is sicker after gluten challenge than I was before. I have never regained my energy and other auto-immunue diseases increased in severity. Think about how badly you want a diagnosis and why.

Best of luck, On Sat, Oct 9, 2010 at 8:48 PM, <beznadan@...> wrote:

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

Darcyddarcy@...

[Guest guest]

Many people have negative blood tests, yet have a biopsy with a positive result.

Positive CD blood tests are rarely false; negative tests are much more commonly false.

H.

-----Original Message-----

From: Darcy <ddarcy@...>

< >

Sent: Sun, Oct 10, 2010 11:28 pm

Subject: Re: [ ] length of gluten challenge?

To my understanding, no one in this field yet has good insight into how much gluten it takes and for how long, before a blood test and biopsy will register positive. Since you are already eating gluten, if you can eat gluten and feel fine, then I'd go ahead and eat at least a serving daily (like a bowl of cereal or a sandwich), for 2-3 months or more, then do the blood test. If positive, then have the biopsy. If you do have celiac, you will heal again on the strict GF diet.

Best wishes,

On Oct 10, 2010, at 11:20 PM, wrote:

I've had the DNA test, and I have one of the markers.

To clarify a bit more, I don't necessarily think I have Celiac disease, but I realize the potential is there. Since my family seems to be mostly nonreactive, I'm concerned that I could potentially have it, not realize it, and eat gluten casually and cause all sorts of damage. I'd like to eat enough gluten to get a definitive test result, so that I can either declare myself a Celiac and go 100% GF again, or declare myself not a Celiac and continue eating gluten casually without worrying that I'm destroying my body. My casual consumption is about 2-4 servings a week of a gluten containing food, which I'm pretty sure is below the threshold for an accurate test. I want to know how much I need to step this up so that I can get an accurate test done.

-

On Sun, Oct 10, 2010 at 9:27 PM, Michie Page <gfchef@...> wrote:

What you need is a DNA test. The test is for markers DQ2 and DQ8. From my understanding, it is not exactly perfect, because having both markers doesn't exactly mean you have CD. But without either marker, you can't have CD. Because it is a DNA test, you don't have to go back on gluten.

On Sat, Oct 9, 2010 at 9:58 PM, Noviello <cgnoviello@...> wrote:

I did a gluten challenge for 5 weeks. Based on how sick I was from the challenge (i.e., barely able to function), my GI doc determined that it had been long enough. He did not do blood work, and my biopsy was negative. I have since been to the Stanford Celiac Clinic, who reviewed my biopsy. The agreed that it was negative, but the GI who did the biopsy took only one sample - not the 6 - 8 that the Celiac Center would have taken, and therefore, unreliable. My advice is, if you are going to do a gluten challenge, do it with a doc with sufficient experience to do it right.

Also, I am one of those who is sicker after gluten challenge than I was before. I have never regained my energy and other auto-immunue diseases increased in severity. Think about how badly you want a diagnosis and why.

Best of luck,

On Sat, Oct 9, 2010 at 8:48 PM, <beznadan@...> wrote:

I'm finding quite a range of answers online - does anyone have any

somewhat recent experience or input from a GI about this? I have

been GF for about 2.5 years (since my kids were diagnosed) and would

like to get tested.

Thanks

-

Darcy

ddarcy@...