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Q & A with Dr. Fasano

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In addition to the good explanation of the two types of immune reaction Pam shared, he was saying that the differences were important to note for proper diagnosis and treatment.  Because of the adaptive response in the Celiac the issue is not only the quick reaction but also a delayed reaction and cummulatiive damage - not so in the sensitive person. Lifetime GF diet for the Celiac vs being able to reintroduce gluten after healing with sensitivity, and also how the Celiac will react to even tiny amounts of gluten vs having a threshold of acceptable gluten consumption in the sensitive person.

I would love a summary of his earlier talk if anyone has notes on that lecture since I had to work the event in the morning.Thanks!-- Maia AlpernPlease note my new email address:

delightfullyraw@...

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The only other notes I had (besides what Pam already wrote) from the

session with Dr. Fassano regarding the difference between CD and

gluten sensitivity, is that someone with gluten sensitivity would not

test positive for the TTG test or the EMA test, but might test

positive on the older versions of the antigliadin test which is less

specific and sensitive. I also believe he said that the newer

deaminated antigliadin test would be negative in gluten sensitivity

but positive in CD. Anyone else remember what he said about the

testing aspect of CD vs. gluten sensitivity? As Pam also described, I

definitely remember him saying that the long term adaptive immune

response is what leads to the gut damage in CD and this is not

present in gluten sensitivity. Only the immediate innate response is

present in gluten sensitivity which is what causes the symptoms for

those with gluten sensitivity. He also said that CD is for life and

that gluten sensitivity may or may not be for life.

Goldbeck

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Thank you guys!

That was great.

So, to re-cap, just to make sure I got

it: Both a person with CD and Gluten Sensitivity (GS) have the immediate

response. (Assuming they are not asymptomatic). But, beyond the

initial response from the gluten, the person with GS does not have to worry

about intestinal damage, and may or may not be able to reintroduce gluten at

some point in their life.

Did I get that right?

AND, if one were GF for a very long time,

how could they tell which you have, assuming you do not have a diagnosis from

before? And, for the purposes of gluten-free eating, and a gluten free

lifestyle, does it really matter which you have? (I’m asking this as

a general question to the group. I’m looking for opinions here, not

what Dr. Fasano said. I guess I’m curious.) If a person with

GS goes around saying they have CD, is that offensive to people with CD, or

does it matter? I helped a friend of mine get off gluten – thank God

or he might have DIED before they figured it out! – but I told him that

when he is eating out or over at friends, he should explain he has CD, because

people don’t take GS as seriously. People think if you’re

sensitive then it doesn’t matter if you get a little gluten…

Also, I wonder if GS is just that under

part of the iceberg Dr. Fasano was talking about. Like they part before

the gut gets damaged?

Oh, and does anyone know if a person with

GS has to have the DQ2/DQ8 as well?

From: [mailto: ] On Behalf Of Goldbeck

Sent: Sunday, May 23, 2010 9:22 AM

Subject: [ ] Re:Q

& A with Dr. Fasano

The only

other notes I had (besides what Pam already wrote) from the

session with Dr. Fassano regarding the difference between CD and

gluten sensitivity, is that someone with gluten sensitivity would not

test positive for the TTG test or the EMA test, but might test

positive on the older versions of the antigliadin test which is less

specific and sensitive. I also believe he said that the newer

deaminated antigliadin test would be negative in gluten sensitivity

but positive in CD. Anyone else remember what he said about the

testing aspect of CD vs. gluten sensitivity? As Pam also described, I

definitely remember him saying that the long term adaptive immune

response is what leads to the gut damage in CD and this is not

present in gluten sensitivity. Only the immediate innate response is

present in gluten sensitivity which is what causes the symptoms for

those with gluten sensitivity. He also said that CD is for life and

that gluten sensitivity may or may not be for life.

Goldbeck

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I can answer parts of this –

HLA DQ2 or DQ8 is only responsible for the autoimmune response,

which in turn causes damage to the mucosa in celiac disease. In gluten

sensitivity, there is not thought to be any autoimmune response, so the HLA is

not playing a role. This would mean that GS is likely not the part of

the iceberg below the surface.

As far as saying you have CD when you don’t, my fear is

that CD will gain a reputation of not being a serious chronic medical

issue, if the general population comes to think that CD means GS. I want

CD to be taken very seriously by the public and by healthcare providers. However,

I am very grateful that the increased awareness of GS as well as CD has helped

to foster the fantastic increase in GF food options!

PS – I believe Dr. Gray said that with GS you are likely

to have a quick reaction to ingestion of gluten, whereas with CD you are more likely

NOT to have such a quick response, since the damage occurs over time. Yet

I know from this list and from other friends that some people with

biopsy-proven CD do have a quick response in a wide variety of ways, so I don’t

know…

From:

[mailto: ] On Behalf Of Lillyth Denaghy

Keogh-Quillan

Sent: Sunday, May 23, 2010 12:15 PM

Subject: RE: [ ] Re:Q & A with Dr. Fasano

Thank you

guys!

That was

great.

So, to

re-cap, just to make sure I got it: Both a person with CD and Gluten

Sensitivity (GS) have the immediate response. (Assuming they are not

asymptomatic). But, beyond the initial response from the gluten, the

person with GS does not have to worry about intestinal damage, and may or may

not be able to reintroduce gluten at some point in their life.

Did I get

that right?

AND, if one

were GF for a very long time, how could they tell which you have, assuming you

do not have a diagnosis from before? And, for the purposes of gluten-free

eating, and a gluten free lifestyle, does it really matter which you

have? (I’m asking this as a general question to the group.

I’m looking for opinions here, not what Dr. Fasano said. I guess

I’m curious.) If a person with GS goes around saying they have CD,

is that offensive to people with CD, or does it matter? I helped a friend

of mine get off gluten – thank God or he might have DIED before they

figured it out! – but I told him that when he is eating out or over at

friends, he should explain he has CD, because people don’t take GS as

seriously. People think if you’re sensitive then it doesn’t matter

if you get a little gluten…

Also, I

wonder if GS is just that under part of the iceberg Dr. Fasano was talking

about. Like they part before the gut gets damaged?

Oh, and

does anyone know if a person with GS has to have the DQ2/DQ8 as well?

From:

[mailto: ] On Behalf Of Goldbeck

Sent: Sunday, May 23, 2010 9:22 AM

Subject: [ ] Re:Q & A with Dr. Fasano

The only other notes I had (besides what Pam already wrote) from the

session with Dr. Fassano regarding the difference between CD and

gluten sensitivity, is that someone with gluten sensitivity would not

test positive for the TTG test or the EMA test, but might test

positive on the older versions of the antigliadin test which is less

specific and sensitive. I also believe he said that the newer

deaminated antigliadin test would be negative in gluten sensitivity

but positive in CD. Anyone else remember what he said about the

testing aspect of CD vs. gluten sensitivity? As Pam also described, I

definitely remember him saying that the long term adaptive immune

response is what leads to the gut damage in CD and this is not

present in gluten sensitivity. Only the immediate innate response is

present in gluten sensitivity which is what causes the symptoms for

those with gluten sensitivity. He also said that CD is for life and

that gluten sensitivity may or may not be for life.

Goldbeck

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