Paid To Be Celiac!

[Grimbol 0]

I registered on the web site, at least I hope I did! I haven't heard back yet, and have been perusing this site as I lost the info, so now I've found it and will call them tomorrow to check. I have been celiac for about 28 years, dx by biopsy, but in UK, hope that counts.

I'd be really interested in this, so anyone who's 'in' I'd love to hear from you.

Margaret

[Claire 4]

I'm also wondering if the drug and its effectiveness is being gauged only by determining whether villi damage is occurring or not. Since we know that gluten affects other areas of the body i.e. tissues, brain function, causes AI diseases...etc...how do we know that gluten is not still causing damage to other areas?

<{POST_SNAPBACK}>

Hi Rachel - So you wonder a lot, too - I see.

If they are going to administer a Zonulin antagonist then they expect to prevent gluten from crossing the intestinal wall into the blood stream. Gluten can only damage tissues, cells, neurons etc. if it gets into the blood stream where the immune system can 'see' it. That's when the mimicry thing kicks in - when the immune systems attacks body cells etc. that resemble' that thing' in the blood that is being attacked. Block the passage into the blood stream - and no immune response is mounted - because there is nothing there to trigger an attack.

Does this make sense? Claire

[laurelfla 5]

hello, all!

just in case anyone is still interested, i'm pursuing getting involved with the study, and after a couple of emails and whatnot, this is what i found out from Alba:

"For information regarding the clinical trial that will be starting in Dec. please contact Parexel at 1-800-296-0052. Parexel will be handling all recruitment for this trial. To be contacted regarding clinical trials in the future please complete the questionnaire at the site below...Please note that you will find a link on the University of Maryland Center for Celiac Research website that will provide you with further related information (on the left side of the home page, click on the “Research/Clinical Trials” link).

www.celiaccenter.org

[laurelfla 5]

i'm in! i just got off the phone with Parexel and i have an appointment in Baltimore Dec. 3. is anyone else still pursuing this? i'm a little nervous now, mostly about the $... i know they will compensate but if the compensation is not like immediate, i'm going to have problems! but i hope that it all works out. i'll continue to keep you guys posted, if you're interested.

hugs,

Laurel.

[Claire 4]

i'm in! i just got off the phone with Parexel and i have an appointment in Baltimore Dec. 3. is anyone else still pursuing this? i'm a little nervous now, mostly about the $... i know they will compensate but if the compensation is not like immediate, i'm going to have problems! but i hope that it all works out. i'll continue to keep you guys posted, if you're interested.

hugs,

Laurel.

<{POST_SNAPBACK}>

Interested! Keep the info coming. Claire

[laurelfla 5]

ok, so i have an appointment and now i have a letter... but still no info on exactly what the study encompasses. these people are elusive! still trying to decide if i'm really going to do this... i hadn't realized it could be a long time before reimbursement, but i have to hurry up if i'm going to get a flight! Turtle and i have been in contact, but if anyone else is involved in this, let me know! maybe we could meet up or something. ~Laurel.

[lovegrov 150]

I also applied to be in the study and they called me, but I was rejected, I assume because of two medications I'm taking.

richard

[RiceGuy 55]

I'm surprized how many actually would take a drug. I mean, it would still be for life, and the drug would cost more than a change in diet I'm sure. Then there are inevitable side-effects. Even if the gluten doesn't make it through into the rest of the system, what about the immune system? If they inhibit such an immune response, that will lead to other diseases because the body won't be putting up any defenses to them. We all know how every drug back-fires. I'd never do it no matter what they paid or how promising it seemed.

I also am worried about the gluten-free market. It could have a large impact, but with the cost of the drug likely to be much higher than just being gluten-free, that could help keep the market intact. I think it is very likely though that people would take a pill for special occasions and stuff, like taking lactaid or something.

Now, as for celiac disease finally getting recognized and properly diagnosed, it could be a good thing for that. But like it has already been pointed out, they will likely lump bunches of people in who have some other problems, just because they don't yet recognize those diseases yet.

All in all I think it's not a good thing really. Since we are talking about something people are born with, not something you catch like the flu. I wasn't born with gills, but I don't think I need them either. I just breath air. I wasn't born to eat gluten, so I won't eat it. It's like taking a pill to get curly hair, or a tan, or to make all your freckles disappear.

[Claire 4]

I'm surprized how many actually would take a drug. I mean, it would still be for life, and the drug would cost more than a change in diet I'm sure. Then there are inevitable side-effects. Even if the gluten doesn't make it through into the rest of the system, what about the immune system? If they inhibit such an immune response, that will lead to other diseases because the body won't be putting up any defenses to them. We all know how every drug back-fires. I'd never do it no matter what they paid or how promising it seemed.

<{POST_SNAPBACK}>

Just addressing your first paragraph. It is my understanding of At-1001 that it is not working against the immune system but is acting as an antagonist against Zonulin (celiacs have higher than average levels of this). Zonulin works at the tight junctions in the intestinal wall - regulating their opening and closing. Apparently in the case of celiac these junctions open and stay open.

This is far less than a scientific description but the best I can do right off.

Does that mean I think it is a good idea. Generally, I have reservations about this. I am with the '"it's not nice to fool mother nature"folks. . Having working in health care facilities, I am convinced that most medications turn out to be worse than what you are taking them for. While this new find may well do what they expect it to do, what about what it does that they don't expect it to do?

I am sure the jury will be out on this for awhile but in the end I suspect many if not most will go the way of the pill. Claire

[lovegrov 150]

I'm not sure I would ever take the pill myself, but I was willing to submit to the trial if it helped others who might need it for whatever reason. Is that all right?

richard

[Claire 4]

I'm not sure I would ever take the pill myself, but I was willing to submit to the trial if it helped others who might need it for whatever reason. Is that all right?

richard

<{POST_SNAPBACK}>

Certainly it's alright. A good thought. I am thinking more about those who will rely on a pill (if one becomes available) so they can eat all the goodies they miss. Some people already use Lactaid and the spinoffs to do that. A body process is being interfered with - on a regular basis. It may be harmless. It may not.

AT-1001 sounds like a Lactaid type 'something' that you do not have to take 'three times a day and at bedtime' In that case its' use could be controlled. Some people would. Some wouldn't.

Claire

[RiceGuy 55]

Just addressing your first paragraph.  It is my understanding of At-1001 that it is not working against the immune system but is acting as an antagonist against Zonulin (celiacs have higher than average levels of this). Zonulin works at the tight junctions in the intestinal wall - regulating their opening and closing.  Apparently in the case of celiac these junctions open and stay open.

This is far less than a scientific description but the best I can do right off.

I see. That's interesting. But I am also in the "It's not nice to fool mother nature" crowd. I figure it's better to work with it than against it.

Now, that brings up a related issue: I have read that in "the old days" wheat didn't have the amount of gluten it does today. It seems that they have been cultivating/pollenating or whatever to make it have more gluten. So essentially the wheat commonly produced today isn't what nature actually intended. I guess gluten intolerance isn't what nature intended either though. With these slow changes to the genetic structure of living things, I'm left wondering just what will life on this planet look like (if there's any left) say 10,000 years from now. Some might say it's evolution. Others might say it's our fault for screwing things up. Diseases and disorders like diabetes, heart disease, cancer, etc were not anywhere near as common as they are today. The US population seems to be paying the highest price in terms of health and wellness. Maybe we just took it too far with all our pollution, plastics, chemicals, etc. Funny how it always comes back to get us sooner or later.

[jenvan 7]

I will be fascinated to see what comes from all of this... I think a large portion of Celiacs would jump on the chance for a pill. Probably b/c it would appear easier for one... At this point, I would have to say I would not choose it myself...but not exploring the possibly would be foolish I think...

[laurelfla 5]

At this point, I would have to say I would not choose it myself...but not exploring the possibly would be foolish I think...

<{POST_SNAPBACK}>

that's exactly why i'm participating in the study. will i take the pill if it is effective and becomes available? i don't know yet. but i think that it is worth a shot to figure out if it works -- and they need people for that. what if it were really wonderful? we'll only know if they try it out.

now, if i can just get the @#$@^%@ people from Parexel to call me back!

[happygirl 7]

I had originally been contacted, had been approved, blah blah blah....but talking w/one of the people involved in the study, turns out I can't participate bc of issues w/my biopsy.

But good luck to those who do!

[KaitiUSA 8]

I definitely would not take a pill at this point. I am against meds unless necessary because of side effects and so forth..I am perfectly content with staying on the diet. I think something that would be nice to have is a pill that helps with accidental gluten ingestions...not something to keep taking over and over...just my opinion.

[Claire 4]

I see. That's interesting. But I am also in the "It's not nice to fool mother nature" crowd. I figure it's better to work with it than against it.

Now, that brings up a related issue: I have read that in "the old days" wheat didn't have the amount of gluten it does today. It seems that they have been cultivating/pollenating or whatever to make it have more gluten. So essentially the wheat commonly produced today isn't what nature actually intended. I guess gluten intolerance isn't what nature intended either though. With these slow changes to the genetic structure of living things, I'm left wondering just what will life on this planet look like (if there's any left) say 10,000 years from now. Some might say it's evolution. Others might say it's our fault for screwing things up. Diseases and disorders like diabetes, heart disease, cancer, etc were not anywhere near as common as they are today. The US population seems to be paying the highest price in terms of health and wellness. Maybe we just took it too far with all our pollution, plastics, chemicals, etc. Funny how it always comes back to get us sooner or later.

This excerpt from 'A History of Wheat'may interest you:

THE NATURAL HISTORY OF WHEAT

The Roman Empire was built on Egyptian wheat, which they called "korn". It was Einkorn, which is the ancestor of modern wheats. (In Latin, this was the earliest form of Triticum, not to be confused with what we call "corn", which is Zea.)

It had two sets of chromosomes like human beings and is described as 2N or diploid. There were also some naturally occurring wheat that had four sets of chromosomes, or 4N or tetraploid. This was the wheat that the Roman Emperor, Eqyptian pharoahs and Christ were eating.

But what is on our table has been selectively bred over time to increase the gluten content for baking or pasta-making. Most are hexaploid, octoploid, double hexaploid, or hexaploid-octoploid hybrids. This means that they have 6, 8, 12, or more sets of chromosomes. Some of this extra DNA is coding for amino acid sequences that human beings cannot break down, including a 33-amino acid sequence named 33-MER. This 33-MER is what is causing the problem for celiac. Our immune systems are attacking this chain as though it were an invader or parasite. But this sequence is also similar to human tissue, and this inflammation can progress into an auto-immune disease. This auto-immune phase is really damaging, and largely incurable. Control is the only treatment, and life-long gluten free diet is the only control.

http://encyclopedias.families.com/the-natu...eat-527-535-efc

Someone of this forum shared this with me some time ago so I am passing it along. Claire

[RiceGuy 55]

This excerpt from 'A History of Wheat'may interest you:

THE NATURAL HISTORY OF WHEAT

The Roman Empire was built on Egyptian wheat, which they called "korn". It was Einkorn, which is the ancestor of modern wheats. (In Latin, this was the earliest form of Triticum, not to be confused with what we call "corn", which is Zea.)

It had two sets of chromosomes like human beings and is described as 2N or diploid. There were also some naturally occurring wheat that had four sets of chromosomes, or 4N or tetraploid. This was the wheat that the Roman Emperor, Eqyptian pharoahs and Christ were eating.

But what is on our table has been selectively bred over time to increase the gluten content for baking or pasta-making. Most are hexaploid, octoploid, double hexaploid, or hexaploid-octoploid hybrids. This means that they have 6, 8, 12, or more sets of chromosomes. Some of this extra DNA is coding for amino acid sequences that human beings cannot break down, including a 33-amino acid sequence named 33-MER. This 33-MER is what is causing the problem for celiac. Our immune systems are attacking this chain as though it were an invader or parasite. But this sequence is also similar to human tissue, and this inflammation can progress into an auto-immune disease. This auto-immune phase is really damaging, and largely incurable. Control is the only treatment, and life-long gluten free diet is the only control.

http://encyclopedias.families.com/the-natu...eat-527-535-efc

Someone of this forum shared this with me some time ago so I am passing it along. Claire

Ah, so I did read correctly...

Thanks for confirming that. Now, what does this say about gluten intolerance? I think it's the same as for air pollution. Man screwed up once again!

So, how do we get wheat like it used to be? Since they know the DNA sequence stuff, the plants obviously still exist. Someone should be producing it for the consumer market, in particular the gluten-free market if it really doesn't hurt us. And according to the info, it's safe.

[Claire 4]

Ah, so I did read correctly...

Thanks for confirming that. Now, what does this say about gluten intolerance? I think it's the same as for air pollution. Man screwed up once again!

So, how do we get wheat like it used to be? Since they know the DNA sequence stuff, the plants obviously still exist. Someone should be producing it for the consumer market, in particular the gluten-free market if it really doesn't hurt us. And according to the info, it's safe.

Now there's a business opportunity for you! Riceguy/wheat farmer! Claire

[laurelfla 5]

well, i'm out of the study. it turns out that reimbursement would not be in full for me, so that doesn't work for me right now. maybe someone else will keep up posted.

[VydorScope 31]

I definitely would not take a pill at this point. I am against meds unless necessary because of side effects and so forth..I am perfectly content with staying on the diet. I think something that would be nice to have is a pill that helps with accidental gluten ingestions...not something to keep taking over and over...just my opinion.

I agree.. it be nice to take a pill then know I can safely order gluten free foods in a resturant and not worry about cross conatmination for example. The vast majority of gluten foods I just do not eat, and realy the only danger (should my test prove postive) to me is hidden gluten in things that should not have it.. and be nice to have some kind of recoruse against that.

[mswift 0]

well, i'm out of the study. it turns out that reimbursement would not be in full for me, so that doesn't work for me right now. maybe someone else will keep up posted.

Hi Laurel,

I'm scheduled to participate in the study and was given the impression that all travel related expenses were going to be reimbursed. Based on what you've sayed I'm a little worried myself now. May I ask what they told you that would not be refunded?

Thanks,

Mike

[jenvan 7]

am eager to hear what happens for those of you in the study!

[VydorScope 31]

am eager to hear what happens for those of you in the study!

Im intrested to hear what hapens TO them. Whish I could take part!

[jenvan 7]

Im intrested to hear what hapens TO them. Whish I could take part!

That too!!