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Claire

Paid To Be Celiac!

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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

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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?


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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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


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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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!


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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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! :)

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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

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Let us know what you hear...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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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.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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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

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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!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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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

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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}>

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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.

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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

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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?

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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. :(


Rachel

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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)


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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:


Rachel

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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

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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?


Rachel

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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


diagnosed 8/05 through positive bloodwork & biopsy

gluten-free since then!

"Those who are willing to be vulnerable move among mysteries." Theodore Roethke

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