Article About Progress On A "celiac Pill"

[spg7000]

Here's a link to an article about progress two different companies are making toward a "celiac pill."

www.celiactoday.com

[home-based-mom]

  spg7000 said:

Here's a link to an article about progress two different companies are making toward a "celiac pill."

www.celiactoday.com

What's the difference between these and GlutenEase? There have been all sorts of posts on GlutenEase. Why would either of these two new products make consuming gluten any safer than what is already available?

Are these just attempts by the pharmaceutical industry to capitalize on an untouched market?

Am I missing something here?

[Silly Yak Pete]

Gluten ease is just plain infective but I dont know about this new "majic pill" but my guess is it would make money and work for celiac disease then it would be awesome.

[larry mac]

  home_based_mom said:

What's the difference between these and GlutenEase? There have been all sorts of posts on GlutenEase. Why would either of these two new products make consuming gluten any safer than what is already available?

Are these just attempts by the pharmaceutical industry to capitalize on an untouched market?

Am I missing something here?

If you actually read the article you would have seen this:

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Neither company at this point is prepared to say that it will deliver a product that will allow people with celiac disease to consume a conventional gluten-containing diet safely.

[Generic]

I am currently participating in the alba phase 2 testing of this drug. They have clearly stated it is at this point for accidental CC etc. not for the use of someone going out and purposely eating a pizza etc.

They are hoping to be able to stop the leaky gut permeability.

[larry mac]

  Generic said:

I am currently participating in the alba phase 2 testing of this drug. They have clearly stated it is at this point for accidental CC etc. not for the use of someone going out and purposely eating a pizza etc. They are hoping to be able to stop the leaky gut permeability.

Do you mind sharing some of your experiences of being a test subject with this drug? We were told that the safety tests had already been done (successfully), and now they were simply trying to determine the proper dosages. Each group of test subjects would be given a different dosage.

After the presentation, I twice emailed the group conducting the tests, but never received a reply. They either had enough participants, I didn't fit their requirements, or they're operation is poorly run. In any case, I thought it was unprofessional not to at least respond, since they had asked for volunteers. As it turned out, I was involved in a horrible accident, and have been recovering ever since. So, it probably would have inconvenient anyway.

Still, I'm curious about your obversations. Please, thank you.

best regards, lm

[Generic]

I just started taking the pills today (Sat). I have been in twice now. They did the initial screening then had me come back to give me the supplies.

I believe they are doing the dosage side of things, but they are also checking the permeability. It is in phase 2, so I would imagine they are checking a wider array of people to see if there is any unreported side effects.

I take 1 pill 15 minutes before I eat, then 2 colored pills during my meal. I do this 3 times a day. I then once a day take a short survey on a palm pilot. And once a week take a longer survey. It is then sent to them via a cell phone internet type connection.

I also have to go in once a week. The night before I have to drink some sugary concoction and collect my urine.

I was told they were getting swamped with phone calls and e-mails. Apparently there is allot of us crazy people out there willing to be guinea pigs. That may explain why you weren't contacted. It took them a week to get back to me. I would think they should have an automated, reply saying they got the e-mail...blah, blah, blah at least. But what do I know?

What I did notice however is, I seemed to know more about celiac than the GI Dr. But that is pretty normal I guess.

[debmidge]

  larry mac said:

After the presentation, I twice emailed the group conducting the tests, but never received a reply. They either had enough participants, I didn't fit their requirements, or they're operation is poorly run. In any case, I thought it was unprofessional not to at least respond, since they had asked for volunteers. As it turned out, I was involved in a horrible accident, and have been recovering ever since. So, it probably would have inconvenient anyway.

best regards, lm

Hope you are getting better from the accident.

[Nic]

  Generic said:

I just started taking the pills today (Sat). I have been in twice now. They did the initial screening then had me come back to give me the supplies.

I believe they are doing the dosage side of things, but they are also checking the permeability. It is in phase 2, so I would imagine they are checking a wider array of people to see if there is any unreported side effects.

I take 1 pill 15 minutes before I eat, then 2 colored pills during my meal. I do this 3 times a day. I then once a day take a short survey on a palm pilot. And once a week take a longer survey. It is then sent to them via a cell phone internet type connection.

I also have to go in once a week. The night before I have to drink some sugary concoction and collect my urine.

I was told they were getting swamped with phone calls and e-mails. Apparently there is allot of us crazy people out there willing to be guinea pigs. That may explain why you weren't contacted. It took them a week to get back to me. I would think they should have an automated, reply saying they got the e-mail...blah, blah, blah at least. But what do I know?

What I did notice however is, I seemed to know more about celiac than the GI Dr. But that is pretty normal I guess.

Hi, do you have any idea if once this drug is approved will it also be dosed for children. Also, I understand that it will not be used to replace a gluten free diet and just for cc issues. But what about when we go out to dinner and my son can't eat the fries because they are not in a dedicated frier. Do you think that counts as cc or as out right eating gluten?

Nicole

[kbtoyssni]

  Nic said:

Hi, do you have any idea if once this drug is approved will it also be dosed for children. Also, I understand that it will not be used to replace a gluten free diet and just for cc issues. But what about when we go out to dinner and my son can't eat the fries because they are not in a dedicated frier. Do you think that counts as cc or as out right eating gluten?

Nicole

I consider it outright eating gluten and with a pill that doesn't claim to replace a gluten-free diet, I would not eat them. I consider the type of CC this pill is designed to treat as the stuff you have no control over - you've checked that every ingredient is gluten-free, asked people to use clean utensils, yet something still goes wrong unbeknownst to anyone and you get sick. I feel like this pill is going to make people very lax about the diet. I mean, those fries can't have *that* much gluten, right? And Lays has problems with CC in their chips, but it's not a big deal if I'm taking the pill, right? Which leads to "one bite" of grandma's cookies, etc. I'm mostly concerned that symptoms may be lessened but damage is still being done, leading to major health problems down the road. I don't see how they can test for this, though, because it would take years to show up on a scope after being gluten-free for a long time. Hopefully they'll publish some of the research they did to determine if it wasn't doing damage.

[larry mac]

  kbtoyssni said:

..... - you've checked that every ingredient is gluten-free, asked people to use clean utensils, yet something still goes wrong unbeknownst to anyone and you get sick.....

I love that word "unbeknownst"! How did you even know how to spell that? You must be a teacher or author (a very pretty one I might add).

best regards, lm

[kbtoyssni]

  larry mac said:

I love that word "unbeknownst"! How did you even know how to spell that? You must be a teacher or author (a very pretty one I might add).

best regards, lm

Thank you! I'm actually an electrical engineer - one of the few who can write well I think! My talents are being wasted on technical documents...

[Generic]

Thought I would give you guys an update. The pill seemed to work fine, but I had to drop out of the study. Apparently I have gall stones and haven't really been able to eat anything. I will be having surgery. But I did find out for sure that I was ingesting wheat and I did not get sick at all. I am one of the people who are super sensitive. When I went to the hospital they called the pharmacy to find out what I had been taking. I opened up the colored pill and it was wheat flour!

I have a feeling that if it works as well as they hope it will, they will start promoting it as an alternative to a gluten free diet. If they can pass it through the FDA that is. I would still only take it for CC issues.

[pixiegirl]

Hmmm well let me say I'd be happy with a pill that would help with accidental glutenings! As I've said many times I travel often and it does happen occasionally to me when I'm on the road. Over all I've had very very good luck (not to mention how careful I am) eating in restaurants all over the country, in canada, mexico and the caribbean.

But I thought the pill was administered not after you thought you got gluten but prior to eating? (I could be wrong on this I'm certainly not part of any study) If that's so, it must be intended for use when you think you "might" be glutened as opposed to after its happened. So even though I'd certainly not take it and eat pizza, I think a lot of people would take it and then try... say... french fries that were fried in common oil. I guess the point I'm trying to make (well if any point at all, its early and I tend to like to talk around things), is that you are all saying its for accidental glutenings but if you take it prior to eating then it sort of doesn't fall in the category of "unbeknownst". Ya have to know its likely to happen (which when you order pizza in a regular restaurant you can be pretty sure of!).

It will be interesting to see how much gluten this pill can block... But again I'd certainly take it at my friends homes, that is the one location that I'm constantly glutened at! (they do try but I think their kitchens must be covered in flour). The other place I'm glutened at constantly is little breakfast joints.

Oh well I need another cup of tea!

Susan

[Generic]

In the study I took the pill minutes prior to eating, then during my meal I would take the gluten pills. So my best guess is, you would take the pill prior to eating at a restaurant or at a freind's house where there is a chance of CC issues.

[NewGFMom]

This sounds pretty cool. I've seen my son get sick, just about every time he eats anywhere but our house, no matter how careful we are. He's 4 and puts his hands in his mouth more than he should.

It would be really nice to know that if we had some accidental gluten that there was some recourse.

It'll probably take years before it's approved for children.

[babinsky]

This sounds exiciting....i would love to have something out there that could help for those accidental times. Does anybody know when something like this would be available.

[kbtoyssni]

  NewGFMom said:

It'll probably take years before it's approved for children.

Is the approval process for children different from that for adults? Just curious.

[pixiegirl]

Actually the answer is really no, most drugs that we use on kids were never tested on children. A drug gets approved and rarely are they approved for an age group only. Antidepressants are an example, tested and initially used on adults but then doctors began to use them on younger and younger patients.

After they were used a while on teenagers and young adults they found that in some teen patients the use of antidepressants increased the risk of suicide, but this wasn't known initially because this side effect doesn't show up on the adults the drugs were tested on. So once the FDA realized that it had a side effect they put a "black box" warning on antidepressants for children, teens, and young adults. A black box warning is the highest level of risk the FDA has for a drug.

Susan

[graindamage]

I suppose this could be good news for people who believe they are avoiding gluten and are still getting sick. However, I am still very disappointed that there isn't anything that will allow me to sit down and, say, once or twice a year, eat a meal containing plenty of gluten. I don't get bothered by small amounts of contamination, so the pill won't help me any, however, if I ate a big meal with gluten, I will most likely get sick for a day or two, which did happen. If it wasn't so painful, I'd deal with it and eat 2-4 slices of pizza once-twice per year. However, I am still hopeful that someone will make a pill that allows me to enjoy my favorites foods on rare occasions.

I've been incredibly depressed for a long time due to this restriction.

[home-based-mom]

  larry mac said:

If you actually read the article you would have seen this:

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Neither company at this point is prepared to say that it will deliver a product that will allow people with celiac disease to consume a conventional gluten-containing diet safely.

[kelly6976]

I just read this and want to pass it on.....

A Celiac Pill: Alba Calls for Participants to Test Effectiveness of AT-1001

By Vanessa Maltin

NFCA Director of Programming & Communications

Do you dream about being able to eat pizza, pasta, cookies, cake and all of your favorite gluten-containing products again? The first year after being diagnosed with celiac disease, I remember wandering up and down the aisles of the grocery store just wishing I could buy the same old products as before I had to be on a gluten-free diet. They were cheaper, tasted better and were easier to find. Even though I

[simplicity66]

I work for the priniting company that owns and of course prinits Canadian Living.....

due to my position i couldnt release any information about the " celiac pill" in the works

there is a doc in Halifax at the University of Dalhouse who is working on a pill that we can take

before eating.....we can eat anything ....quite intresting...i am sure there will be alot of people who may sign up to try this "pill" when its ready for testing.... if u can get a Canadian Living magazine October issue or going on line at www.canadianliving.com/october..... read all about this

[Gemini]

  Quote

[Takala]

I will stick to the diet, thank you.

No real long term studies will be available for years of possible complications and side effects.

Diet is proven to work.

Have had many very bad run- ins which pharmaceutical reps masquerading as something else on the internets, and truly despise the attitude they have that anyone who successfully treats and copes with a disease without medication must be harassed if they share this knowledge on the internet.

Just another thing for insurance companies in this country (US) to try to deny coverage of or not pay for if it were proven necessary.