Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Alv003 Trials

Wombat

By Wombat
in Related Issues & Disorders

Recommended Posts

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

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
Wombat Newbie
Wombat
  • Author
Posted

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!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,039
    • Most Online (within 30 mins)
      7,748
    Becky Martin
    Newest Member
    Becky Martin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Eldene
      Oats gluten free?

      By Eldene · Posted

      Any Naturopaths on this site?
    • Katiec123
      Finding out I’m coeliac whilst pregnant

      By Katiec123 · Posted

      @RMJ it makes sense as it’s something I’ve experienced more than once. Currently 24 weeks and baby is doing well! Will be seeking more medical advice today 
    • Manaan2
      Vitamin Levels and constipation

      By Manaan2 · Posted

      Thank you! This is great information and perfect timing because we have our first appointment for a second opinion tomorrow.  
    • trents
      Doc says I have celiac, despite no GI symptoms?

      By trents · Posted

      Bright blood in the stool would indicate bleeding down at the lower end in the colorectal area as opposed to the small bowel below the stomach where celiac manifests damage to the villous lining. Are these blood stools persistent? It's not unusual for this to happen once in a while to most anyone when a small surface vessel breaks, kind of like a nose bleed. As Scott Adams said, you must continue to consume regular amounts of gluten if the specialist will be doing additional testing for celiac disease, which could include an endoscopy with biopsy of the small bowel lining.
    • Bev in Milw
      Gluten-free bread

      By Bev in Milw · Posted

      Checkouts gluten-free recipes at twww.redstaryeast.com We tried a bread machine years ago and weren’t happy with results. Bread machines have pre-set rise & bake times.  Unfortunately, the program doesn’t adjust to slight differences when measuring, relative humidity or temperature of ingredients & in kitchens.  Lots of efforts for ONE odd- sized loaf that hard to cut into useable slices.  College-aged son found best use for bread machine was as heavy duty mixer that ‘kept dust in the box.’  He would pre-measure ingredients for 2-3 loaves & use machine mix up individual batches.      Since gluten-free bread needs  to rise only once, each recipe of dough went into a loaf pan. Pans sat counter to rise—time dependent of temp in kitchen. Then, baked in oven until he, not machine, decided it was done.     Took ~10 min extra up front to measure & mix additions but adds nothing to rise & bake times.     Loaves are great for slicing (Slice extra before freezing!). One mess to clean up, saves time & energy since you need to bake  as is half as often (If  you plan to bake lots more than bread, opt for KitchenAid/ heavy duty mixer instead.  Cover with dish towel to capture dust!)     Personally, I’m sure I had as a kid since I’ve never been a fan  of bread. .  Have been wrapping corn tortillas around things for 40+ years.  Can still get a dozen 12-pks of tortillas for same or less than price as 1 load of gluten-free bread. PLUS. the tortillas have more nutrients!         
×
×
  • Create New...