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Alv003 Trials

Wombat

By Wombat
in Related Issues & Disorders

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Wombat Newbie
Wombat
Posted

Hi everyone,

I recently volunteered at our research hospital here in Melbourne, Australia for trails with ALV003, with about 5 other volunteers.

ALV003 is an orally administered combination of two proteases engineered to digest gluten. It targets the glutamine and proline residues that are common in gluten. ALV003 consists of a glutamine-specific cysteine protease (EP-B2) and a proline specific prolyl endopeptidase (PEP). The proposed mechanism of action of ALV003 is to digest gluten into non-immunotoxic fragments. (go to Google and look up "ALV003" to find out more info)

I didnt have any problems taking it as I didnt know if I had ALV003 or placebo!! Even the doctors didnt know, I suppose they find out thru the blood tests.

Anyway, I just wanted to know if any one else here volunteered to try ALV003??

Cheers

Ty :D

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darlindeb25 Collaborator
darlindeb25
Posted

Someone I know, volunteered at Columbia University for one of these celiac studies, and he became very, very ill. My guess is--he didn't get the placebo!!! :o He has been ill now for months.

I got very ill, just by being glutened by a medication I took 2 times this pass January. I was ill for 3 months.

I think it's great that you volunteered and did not get ill, but it's not for me. They do not know enough about celiac disease yet, they still are having problems diagnosing it in so many people--I don't trust them to invent something to erase, so to speak, the gluten from our food!

ShayFL Enthusiast
ShayFL
Posted

I really cannot understand why someone would want to take a drug to be able to eat a food that they do not need. It is like you are trying to "outsmart" your body. When clearly your body knows what is best for you: gluten free diet.

The only usefulness I can see is that you could take it in situations where you have no control over CC. Eating out, dinner parties, etc. But still not eating obvious gluten. But taking the pill just in case some accidentally gets into your food.

elonwy Enthusiast
elonwy
Posted

I want them to come up with a pill so I can not get sick everytime someone waves gluten near my food. I don't want to eat gluten, I just want to be not so sensitive to CC. I haven't volunteered for anything cause theres nothing near me, but I think I would if I qualified.

Lockheed Apprentice
Lockheed
Posted

What's the likelihood that they are using starch in their placebo that contains wheat? wouldn't that be sad if it's the placebo that's making people sick in the trial and not the medication?

home-based-mom Contributor
home-based-mom
Posted
I really cannot understand why someone would want to take a drug to be able to eat a food that they do not need. It is like you are trying to "outsmart" your body. When clearly your body knows what is best for you: gluten free diet.

The only usefulness I can see is that you could take it in situations where you have no control over CC. Eating out, dinner parties, etc. But still not eating obvious gluten. But taking the pill just in case some accidentally gets into your food.

I think I remember somebody posting once that they had been part of a double blind research study but I don't remember if it was for this substance or another one. Anyway, they had to drop out for other totally non-related reasons and so were allowed to see if they had been given the wheat or the placebo and it was the wheat. They were pleasantly surprised because there had been no gluten symptoms.

That being said, there is already GlutenEase which is designed to handle possible cc situations. It is readily available OTC. I feel it is helping me and my goal is to be sufficiently healed to be able to take a capsule or two and then eat out without having to stress out over cc possibilities. I can't see using GlutenEase or anything else to just eat something made out of wheat.

tom Contributor
tom
Posted
That being said, there is already GlutenEase which is designed to handle possible cc situations.

No offense, I hope, but that's not really true.

Other threads here have discussed this.

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home-based-mom Contributor
home-based-mom
Posted
No offense, I hope, but that's not really true.

Other threads here have discussed this.

This one, for instance.

Open Original Shared Link

Generic Apprentice
Generic
Posted

I was the one who had to drop out (gallstones). I was in the Alba therapeutics study. I believe this is a different type of medication. Either way, I want them to develop a pill not only to protect me from cc issues, but also because we all know how much power the pharmaceutical companies have. If they find something that works they will start pushing it, just like they do for "IBS" pills. The awareness will go through the roof. Which will start turning that wheel of evolution of food.

tom Contributor
tom
Posted
That being said, there is already GlutenEase which is designed to handle possible cc situations.

Searching the forum for GlutenEase produced 314 results.

Its effectiveness against CC, for a Celiac, seems under debate, to me, and as far as I know, still hasn't been tested.

BUT, the word I was taking exception to was designed.

Maybe it seems to work for some people (how do they know whether they actually GOT cc'd???), but it wasn't designed for a celiac worried about CC.

Wombat Newbie
Wombat
Posted
  • Author

I was told by the doctors before the trials that ALV003 is NOT a cure for us to eat food with gluten in it. It's just a safe guard against any cross-contaminated foods, e.g. restaurants!

I am still glad that I volunteered to do this, and if I was asked again I would say yes!

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