Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Paid To Be Celiac!


Claire

Recommended Posts

Claire Collaborator

In case you missed this:

Celiac Disease Drug Therapy Study Participants Needed

Celiac.com 11/08/2005 - Alba Therapeutics Corp. in conjunction with the University of Maryland Center for Celiac Disease Research is searching for volunteers to take part in a study of a new medication that is designed to block the effects of gluten on the intestinal tract of celiac patients.

Subjects must meet the following criteria:

• Be between 18 - 59 years of age;

• Have biopsy proven celiac disease;

• Must have been on a gluten free diet for at least 6 months.

The company will pay expenses for those that qualify for inclusion in the study to bring them to Baltimore for 3 days (December 9-11, 2005) and will pay subjects $1,100.00 for participating.

No contact number here but calling Alba Therapeutics in Baltimore should do it. Note that the 'gold standard' here for diagnosis is the biospy. Strange but true. The British studies showed that a very high percentage of celiac patients do not have a positive biopsy. Claire


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 58
  • Created
  • Last Reply
jenvan Collaborator

thanks for the info! guess this is where the pedal meets the metal. who is willing to sacrifice themselves for research ? :) i could use that $1,100. that's like 2 mos of gluten-free grocery bills !! so, i'm curious, is anyone going to try it?

Canadian Karen Community Regular

I phoned and left a message on the answering machine but haven't heard anything back yet. I figure I have nothing to lose.

Maybe they don't want to pay my way from Canada!!! LOL!

Karen

skoki-mom Explorer

I would do it in a second, but I've only been gluten-free for not even 3 months yet. Get paid to take a pill and eat a burger, sounds too good to be true!

MySuicidalTurtle Enthusiast

I wouldn't want to eat gluten, though.

Guest gfinnebraska

I would do it ~ but I don't have the "official diagnosis" to do it. :( Oh well. Please post and let us know if you do it and how it went! :)

lovegrov Collaborator

I think the idea is to go online and register, not call. Anyway, I registered yesterday as I am biopsy (and blood test) diagnosed. Haven't heard anything yet.

I don't know the details, but I can only assume the testing would involve eating gluten.

richard


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Let us know what you hear...

VydorScope Proficient

bah I would do this too if I could :(

Rusla Enthusiast

I would do it but I have been gluten-free for three day and I have not had the biopsy. They would not want to pay to fly me down there either probably. I would be a great one to try it on because if there is an unusual reaction, I will have it, then on the other hand one could grow three heads from it and get other medical problems. They could save tons of money by doing it with any prisoners that have Celiac.

happygirl Collaborator

I had sent in my info via the Center for Celiac Research (UMB) and was contacted last week!!!

I am going up there the last week of November for "screening" --- bloodwork, EKG, etc to make sure I qualify.

Then, if I do, I'll be up there the weekend of Dec 9th-11th.

After completing a master's degree that focused on research methodology, I had a lot of questions!!! I emailed the guy I talked to a whole laundry list of questions, including more info on exactly will be done (i.e., do they give us a pill and then eat gluten? do they then take blood to measure our antibodies? what are we going to be eating) as well as an explanation of how they think this drug is going to work. The guy that I spoke with was very, very nice and helpful...he just wrote me to tell me he is working on answering all my questions.

So....I'll let you know more when I find out!!!! :D

celiac3270 Collaborator

Yes! This is very, very promising that they're moving to the human testing phase. You guys will have to tell us how it goes if any of you are "tested."

tarnalberry Community Regular

I would if I had a biopsy dx, but alas... none for me.

Good luck, to all of you trying to get into the study. And thank you!

sonjaf Rookie

I would do it, but I don't want to leave my kids for any amount of time. I am glad to see that there is research of some sort going on. I would love to hear the results, or at least how they are "testing" treatment options. I think I would be too scared to get sick again to purposely eat gluten. Hum....

Sonja

mdono Explorer

where did you register? I am definitely interested...

Guest CD_Surviver
In case you missed this:

Celiac Disease Drug Therapy Study Participants Needed

Celiac.com 11/08/2005 - Alba Therapeutics Corp. in conjunction with the University of Maryland Center for Celiac Disease Research is searching for volunteers to take part in a study of a new medication that is designed to block the effects of gluten on the intestinal tract of celiac patients.

Subjects must meet the following criteria:

•  Be between 18 - 59 years of age;

•  Have biopsy proven celiac disease;

•  Must have been on a gluten free diet for at least 6 months.

The company will pay expenses for those that qualify for inclusion in the study to bring them to Baltimore for 3 days (December 9-11, 2005) and will pay subjects $1,100.00 for participating.

No contact number here but calling Alba Therapeutics in Baltimore should do it. Note that the 'gold standard' here for diagnosis is the biospy.  Strange but true.  The British studies showed that a very high percentage of celiac patients do not have a positive biopsy.    Claire

<{POST_SNAPBACK}>

Guest CD_Surviver

Hey i have been gluten free for 10 years now but i am only 16 so that is bad for me because i was diagnosed and they did the biopsy to find out.

Survivor Newbie

How fuuny - I became an official member today also, and I picked a similar name to the last person! LOL!

.I am very glad to learn about this resarch Claire.

I hope that this research will help you also. Mary

Survivor Newbie
Hey i have been gluten free for 10 years now but i am only 16 so that is bad for me because i was diagnosed and they did the biopsy to find out.

<{POST_SNAPBACK}>

If they did a biopsy isn;t that OK?

Rachel--24 Collaborator
If they did a biopsy isn;t that OK?

<{POST_SNAPBACK}>

You have to be between the ages of 18-59. He is only 16...so he doesnt qualify. :(

ravenwoodglass Mentor
In case you missed this:

Celiac Disease Drug Therapy Study Participants Needed

Celiac.com 11/08/2005 - Alba Therapeutics Corp. in conjunction with the University of Maryland Center for Celiac Disease Research is searching for volunteers to take part in a study of a new medication that is designed to block the effects of gluten on the intestinal tract of celiac patients.

Subjects must meet the following criteria:

•  Be between 18 - 59 years of age;

•  Have biopsy proven celiac disease;

•  Must have been on a gluten free diet for at least 6 months.

The company will pay expenses for those that qualify for inclusion in the study to bring them to Baltimore for 3 days (December 9-11, 2005) and will pay subjects $1,100.00 for participating.

No contact number here but calling Alba Therapeutics in Baltimore should do it. Note that the 'gold standard' here for diagnosis is the biospy.  Strange but true.  The British studies showed that a very high percentage of celiac patients do not have a positive biopsy.    Claire

<{POST_SNAPBACK}>

This sounds great except....In every drug trial they need to have a control group that is recieving a placebo instead of the drug. What do I think my chances would be of getting the placebo? With my luck real good, do I want to go through that pain, not for a million dollars. The only good thing about this in my mind is that they once they find a pill, undoubtedly real expensive and with lots of side effects that need monitoring ($$$$$), the doctors in this country might actually look for celiac. Personally I will stick with the diet but might use the pills for a night out at a restaurant to protect me from the inevitable crosscontamination. If they would stop using this poison in so many foods, (and there are alternitives after all) we wouldn't need their pills. But then again Americans have been taught for 100 years that meds take care of any problem, if one doesn't work try another, or two, as long as we get symptom relief who cares if they're killing us. (Sorry after years of toxic meds when what I needed was a change in diet I have little trust left in the AMA)

Rachel--24 Collaborator
If they would stop using this poison in so many foods, (and there are alternitives after all) we wouldn't need their pills.

<{POST_SNAPBACK}>

Well said...I couldnt agree more. I'm sure celiac would become common knowledge if there was a drug that docs could prescribe but would that also affect the availability of gluten-free foods? If Celiacs could eat gluten without suffering symptoms (by taking a drug) what would happen to the gluten-free market? :unsure:

Claire Collaborator
Well said...I couldnt agree more. I'm sure celiac would become common knowledge if there was a drug that docs could prescribe but would that also affect the availability of gluten-free foods?  If Celiacs could eat gluten without suffering symptoms (by taking a drug) what would happen to the gluten-free market?  :unsure:

<{POST_SNAPBACK}>

Hi Rachel - I have been thinking about this too. This 'find' is still quite awhile from the marketplace but when it does become available there are many celiacs who will gravitate to it and that certainly will impact the gluten free market. It could become very difficult for people wanting to remain on the diet (i.e. not wanting to go for drug relief) if gluten-free foods become more scarce.

I have thought of something else also. For years patients with severe GI problems were told they had IBS. It became the catch all diagnosis for GI problems. The same thing happened in the field of mental health - everybody was either schizophrenic or bipolar. Now if there is a drug for celiac I fear that this too will become a 'catch all' and patients will be wrongfully diagnosed - the line between IBS and celiac even further blurred.

So maybe this isn't all good. Claire

Rachel--24 Collaborator
Hi Rachel - I have been thinking about this too. This 'find' is still quite awhile from the marketplace but when it does become available there are many celiacs who will gravitate to it and that certainly will impact the gluten free market. It could become very difficult for people wanting to remain on the diet (i.e. not wanting to go for drug relief) if gluten-free foods become more scarce.

I have thought of something else also. For years patients with severe GI problems were told they had IBS. It became the catch all diagnosis for GI problems. The same thing happened in the field of mental health - everybody was either schizophrenic or bipolar. Now if there is a drug for celiac I fear that this too will become a 'catch all' and patients will be wrongfully diagnosed - the line between IBS and celiac even further blurred.

So maybe this isn't all good.  Claire

<{POST_SNAPBACK}>

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?

laurelfla Enthusiast

perhaps they'll keep track of other symptoms that occur. this is all so interesting! dang i wish i could participate! i will have been gluten-free for 6 mos by the time of the study... i say aug bc that is when i got the diagnosis but i was on the diet before all that... hmmm

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,602
    • Most Online (within 30 mins)
      7,748

    Victor bowden
    Newest Member
    Victor bowden
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.