Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

'eat What You Want' Pill Caution


  • Please log in to reply

35 replies to this topic

#16 tarnalberry

 
tarnalberry

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,542 posts
 

Posted 10 March 2006 - 12:13 PM

Given that zonulin is there for a reason, I think it would still be the sort of thing that I would take only when going out in case of contamination. There are lots of meds designed to 'correct' things in the body that do their job quite well, but because almost everything in the human body is a multitasker, the drugs have unexpected consequences as well. I get a lot of those, and get tired of them ;-)
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

Celiac.com Sponsor:

#17 chrissy

 
chrissy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,046 posts
 

Posted 10 March 2006 - 12:17 PM

laura----i re-read the original article that was posted-----it referred to the pill helping people that are "prone" to celiac or diabetes. i am wondering if that was referring to people who have the genetic disposition, without already having the disease. did he indicate if it would be in the best interest of these people to also use this drug to avoid the disease from being turned on in the first place?
christine
  • 0
Christine

15 year old twins with celiac, diagnosed dec. 2005
11 year old daughter with celiac diagnosed dec 2005
17 year old son with celiac gene

#18 Guest_Viola_*

 
Guest_Viola_*
  • Guests
 

Posted 10 March 2006 - 01:02 PM

Laura- Tthank you! That actually sounds pretty darn hopeful. Think of it as a gluten condom :P .


:lol: :lol: :lol: :lol:
  • 0

#19 happygirl

 
happygirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,942 posts
 

Posted 10 March 2006 - 01:52 PM

Chrissy--From what he spoke about at the meeting, this drug is designed for diagnosed Celiacs (i.e., not gluten intolerant, gluten sensitive, only Celiacs). He did not address the role of of this drug in people who might be at a higher risk (those with the gene, family history, etc.) I also do not know if this exact pill will work for other auto-immune disorders, or if it more of the idea of how it would work but it needs to be tweaked?

The other thing is that Celiacs do not have to take the drug, obviously...but that it would be taken like a lactaid (when one wants to eat gluten or there is a risk of cc).
Basically, the way he presented it, the way they are approaching this....Celiac is just a stepping stone to potentially understanding many other autoimmune disorders.
  • 0

#20 chrissy

 
chrissy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,046 posts
 

Posted 10 March 2006 - 03:18 PM

that could really simplify things for celiacs (after i just started a thread about it not being as hard as people think LOL!!) you could just carry it in your purse for those times when your choices are limited or questionable.
christine
  • 0
Christine

15 year old twins with celiac, diagnosed dec. 2005
11 year old daughter with celiac diagnosed dec 2005
17 year old son with celiac gene

#21 plantime

 
plantime

    My two handsome grandsons

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,692 posts
 

Posted 10 March 2006 - 04:06 PM

I was told that celiac is caused by a lack of a specific digestive enzyme, and that the resulting reaction is what causes the intestinal wall to be super-permeable. Stopping the permeability of the intestinal wall is not going to stop the celiac reaction. I will need to see a WHOLE LOT more research on this before I will consider such a pill to be viable.
  • 0
Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#22 happygirl

 
happygirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,942 posts
 

Posted 11 March 2006 - 06:35 AM

Dessa, I think that there are various theories out there right now about what causes Celiac, hence, the various angles that research is taking. I believe there is research looking at the enzymes as well.

"Stopping the permeability of the intestinal wall is not going to stop the celiac reaction." Although the research on zonulin is in its early stages, the results of the Phase 1 testing say that it does stop the celiac reaction from occurring, according to Dr. Fassano and Dr. Paterson. From what Dr. Paterson said, this is a new way to not only look at Celiac, but other autoimmune disorders. He showed us slides of Celiacs (untreated, with blunted villi) vs. slides of normal villi, that were "stained" to show the zonulin....which was markedly higher in Celiacs. AT-1001, based in INITIAL studies, stopped the overexpression of zonulin, hence keeping the "gates"/tight junctions closed....therefore not letting gluten pass, preventing the autoimmune cells from attacking it.

I think that one of his reasons for coming to speak at this GIG meeting was to begin to provide Celiacs with understandable information, based on their theory of Celiac and autoimmune disorders. He said it will be 2-5 years before a drug is available, so hopefully in that time, their studies will continue to support this, and information will be made available so that we can all make our individual decisions. I thought it was really interesting that Dr. Paterson's father has Celiac, and both Dr. Paterson and Dr. Fasano's wives have autoimmune disorders. I think that it is potentially pretty cool that research on Celiac might open doors to change the way autoimmune disorders are studied and treated.

Whatever the cause/reason for the Celiac reaction, I am encouraged by the research that I saw!
  • 0

#23 VydorScope

 
VydorScope

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,364 posts
 

Posted 11 March 2006 - 06:40 AM

Did they give any time frame for future testing/etc?
  • 0

- Vincent -


#24 Guest_BERNESES_*

 
Guest_BERNESES_*
  • Guests
 

Posted 11 March 2006 - 07:37 AM

I'm just glad that there's research going on! That is something to be very optimistic about. I think many people are hesitant because we've all had some bad experiences with doctors, medications, etc. (some of us worse than others) but at least someone is looking at what is going on and maybe ways to stop it.
  • 0

#25 VydorScope

 
VydorScope

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,364 posts
 

Posted 11 March 2006 - 08:37 AM

I'm just glad that there's research going on! That is something to be very optimistic about. I think many people are hesitant because we've all had some bad experiences with doctors, medications, etc. (some of us worse than others) but at least someone is looking at what is going on and maybe ways to stop it.


I completely agree.
  • 0

- Vincent -


#26 happygirl

 
happygirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,942 posts
 

Posted 11 March 2006 - 09:13 AM

Ditto about the research, Bev and Vincent. I told Dr. Paterson how he gave me a lot of hope --- not only for myself/Celiacs, but for others. They are taking a huge risk (in terms of money) and medical advancements aren't made without risks. He really inspired me!!!!!!!!! I wish I had a video of the talk for everyone to see!!!

Vincent-I don't remember if he mentioned when the next round (Phase II) of testing will be begin. He did talk a lot about requirements for people to be able to participate (proven biopsy, etc.) but I don't recall about timeframe for testing. There were others from my Celiac group (VaBeach) that were at the Richmond meeting---I can ask at our next meeting if anyone has an answer to that. Maybe the press release that comes out Monday will address it?
  • 0

#27 tarnalberry

 
tarnalberry

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,542 posts
 

Posted 11 March 2006 - 10:30 AM

Laura, a question:

It's my understanding that the recognition of the 33-mer that triggers the reaction occurs in the gut. So I don't understand how suppressing zonulin to 'keep the gates closed' makes any difference. Is the implication here that the immune reaction does *not* take place in the gut, but outside of the intestines?
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#28 happygirl

 
happygirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,942 posts
 

Posted 11 March 2006 - 10:46 AM

hey tarnalberry,

Yes, that is what I took from it, and from the pictures that were presented. (that the reaction occurs once the gluten has breeched barrier cells, through the tight junction). Now, I don't understand it fully, but that is the basis that the zonulin research is going on. But, yes, I do believe it is the 33-mer that triggers the reaction for Celiacs...My understanding was that it is ok until it breeches the barrier cells, and then the auto-immune cells (in Celiacs) recognize that chain as "bad."

I took this from the website of Alba Therapeutics, under "Celiac Disease"

"It is known that altered intestinal permeability (leaky gut) is a hallmark of celiac disease and tracks the severity of the disease. It is likely that zonulin-induced leaky gut is both a cause and a consequence of the disease, facilitating transport to gluten which then triggers an inflammatory process, resulting in a leak which can be blocked by zonulin antagonists."

Hope that helps?! Let me know.
  • 0

#29 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 11 March 2006 - 11:24 AM

Wow--thanks Laura--this is all so interesting :)
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#30 happygirl

 
happygirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,942 posts
 

Posted 11 March 2006 - 11:28 AM

Thanks girl---I am just trying to present the information the best I can from what I heard and took notes on! I seriously wish everyone could have been there!
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: