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.

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

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.