RE: Refractory Celiac Disease

[Guest guest]

Hello. Dr. Aron is a fabulous physician, and you can get all your questions answered if you post them on his

website: www.gut-check.com. He is also Alison St. Sure's doctor. She's pretty well-known in the GF world.

My 18-year old daughter started seeing him about 8 months ago. He believes she has refractory sprue as well, which, simply stated, is celiac symptoms even with a GF diet. She is now on Apriso (mesalamine), which has helped ENORMOUSLY.

I would do whatever he says. He's passionate about his work, and is involved in cutting edge research re: celiac disease. You may have some of your questions answered if you read the celiac article in the August issue of Scientific American.

Good Luck!Melis B----- "ahpril8" <ahpril8@...> wrote: >

> > > Hi all-> I posted about hosting a san francisco dinner party group a few months ago and then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma and getting a bone marrow transplant (she doesn't have celiac, but lymphoma is an auto-immune disease too) and then i also started not feeling well. > I've been gluten free for a year and for 6 months felt great, better than i had in years, then started going downhill again. I dont feel as tired and worn down as i did before diagnosed, but I want to feel as good as I did a few months ago!> I started seeing a new doctor (Dr. Aron) and he want to do another endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He says I should have and endoscopy every year.> I didn't have much time with the doctor to ask all my questions so i thought i would pose them to you all before i started google-ing> What is Level IIIB subtotal atrophy on the Marsh scale?> I know refractory celiac means i'm not feeling better but why?> what is refractory mean?> what do they do to fix it?> is it 'standard operating procedure' to have an endoscopy every year?> ok thanks! > /april > p.s. I still hope to start a san francisco dinner pary group when i'm feeling better...>

>

[Guest guest]

I don’t know much about it, but I think it ties in with lymphoma…as

in it can progress into that. Is your mom 100% she doesnt have celiac?

From:

[mailto: ] On Behalf Of ahpril8

Sent: Monday, August 24, 2009 7:51 PM

Subject: [ ] Refractory Celiac Disease

Hi all-

I posted about hosting a san francisco dinner party group a few months ago and

then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma and

getting a bone marrow transplant (she doesn't have celiac, but lymphoma is an

auto-immune disease too) and then i also started not feeling well.

I've been gluten free for a year and for 6 months felt great, better than i had

in years, then started going downhill again. I dont feel as tired and worn down

as i did before diagnosed, but I want to feel as good as I did a few months

ago!

I started seeing a new doctor (Dr. Aron) and he want to do another

endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on

the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He

says I should have and endoscopy every year.

I didn't have much time with the doctor to ask all my questions so i thought i

would pose them to you all before i started google-ing

What is Level IIIB subtotal atrophy on the Marsh scale?

I know refractory celiac means i'm not feeling better but why?

what is refractory mean?

what do they do to fix it?

is it 'standard operating procedure' to have an endoscopy every year?

ok thanks!

/april

p.s. I still hope to start a san francisco dinner pary group when i'm feeling

better...

..

[Guest guest]

I wonder… If 20% of all celiacs have a “celiac

like response” to even gluten free oats – has there been any research into the

possibility of refractory sprue simply being an inability to tolerate other

grains as well?

I certainly have met other celiacs who

cannot tolerate ANY grain, and I myself find that brown rice (whole, cooked

brown rice) irritates my intestines. I have no “messy” symptoms to speak of,

but it *does* cause me painful

digestion. I can eat brown rice processed products with impunity.

Does anyone know if there is any research

into this?

From: [mailto: ] On Behalf Of melbatavia@...

Sent: Tuesday, August 25, 2009

10:58 AM

Subject: Re: [ ]

Refractory Celiac Disease

Hello. Dr. Aron is a fabulous physician,

and you can get all

your questions answered if you post them on his

website: www.gut-check.com.

He is also Alison St. Sure's doctor. She's pretty well-known in the GF world.

My 18-year old daughter started seeing him about

8 months ago. He believes she has refractory sprue as well, which, simply

stated, is celiac symptoms even with a GF diet. She is now on Apriso

(mesalamine), which has helped ENORMOUSLY.

I would do whatever he says. He's passionate

about his work, and is involved in cutting edge research re: celiac disease.

You may have some of your questions answered if you read the celiac article in

the August issue of Scientific American.

Good Luck!

Melis B

----- " ahpril8 " <ahpril8hotmail> wrote:

>

>

>

>

Hi all-

> I posted about hosting a san

francisco dinner party group a few months ago and then

fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma and

getting a bone marrow transplant (she doesn't have celiac, but lymphoma is an

auto-immune disease too) and then i also started not feeling well.

> I've been gluten free for a year and for 6 months felt great, better than

i had in years, then started going downhill again. I dont feel as tired and

worn down as i did before diagnosed, but I want to feel as good as I did a few

months ago!

> I started seeing a new doctor (Dr. Aron) and he want to do another

endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on

the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He

says I should have and endoscopy every year.

> I didn't have much time with the doctor to ask all my questions so i

thought i would pose them to you all before i started google-ing

> What is Level IIIB subtotal atrophy on the Marsh scale?

> I know refractory celiac means i'm not feeling better but why?

> what is refractory mean?

> what do they do to fix it?

> is it 'standard operating procedure' to have an endoscopy every year?

> ok thanks!

> /april

> p.s. I still hope to start a san

francisco dinner pary group when i'm feeling better...

>

>