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Claire

Paid To Be Celiac!

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I just signed up at http://www.celiaccenter.org/trials.asp for future trials. I'll keep you posted. Looking forward to what happens at the trials this weekend.


Carrie

Blood test May 25, 2005

Positive diagnosis through Endoscopy June 13, 2005

gluten-free since then...

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Guest Viola

That's interesting. I hope someone that is in it belongs to this forum and keeps us up-to-date.

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Hi Laurel,

I'm scheduled to participate in the study and was given the impression that all travel related expenses were going to be reimbursed. Based on what you've sayed I'm a little worried myself now. May I ask what they told you that would not be refunded?

Thanks,

Mike

hi, Mike --

i'm sorry to be getting back here so late -- for some reason i never saw new posts on this thread over the last few days. now you probably know more than i do about the reimbursement stuff, but just in case here is what Mr. Horesh told me: reimbursement up to $300 for travel (plane, gas, taxi), up to $100 for hotel stays, keeping all receipts. which sounded good, until i asked if that was for the one trip on Dec. 3 for the initial appointment or all of them; he told me that was the total amount possible for all the necessary trips. since at that point the ticket was already up to $222 from here to Baltimore, and i have no extra cash, i passed on it. he also said it would take up to a couple of weeks to get the reimbursement. hope this helps!

Laurel.


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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Hi Laurel,

I went to the screening anyway and I'm waiting to hear back whether or not I still qualify. Sounds like they did not do a very good job explaining this to you. The study contract I came back with states the reimbursement is per study visit: $300 travel and $100 hotel with a max of $1200 for the complete study.

They could have done a better job giving details about the required dates/times for the study too. A couple of people in my screening group(about 8 people) didn't even end up doing the screening after we were told that the 3rd visit was going to be on Thursday the 15th. Their expenses for the trip are still being paid, but they could have been saved the time(and Parexel's money) if Parexel had told us this on the phone screen before ariving on site.

Mike


Mike

Seattle Area

Was found to have Iron deficient anemia in March 2003, endoscopy confirmed Celiac July 2003. Also, discovered Osteopenia condition July 2003.

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Well, I found out yesterday that I've been excluded. But the person I spoke with said there was a chance that this weekend's study will be postponed anyway. A reason was not given, but if I had to guess it would be due to a lack of "qualified" candidates.


Mike

Seattle Area

Was found to have Iron deficient anemia in March 2003, endoscopy confirmed Celiac July 2003. Also, discovered Osteopenia condition July 2003.

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Guest BERNESES

I just wanted to keep this thread going and see if anyone had heard any more. I'm with most of you- i wouldn't risk taking a pill and eating an unrestricted diet but I would be more than happy to take a pill and remain gluten free so that cross-contamination, hidden gluten etc wasn't so painful.

I was researching this online and according to Tufts, iot can take up to a decade and $300 million dollars before a drug gets approved. yeeks! But at least some research is happening! Beverly

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Sounds like participating in this study is as difficult as participating in the Catholic church!!! It's hard to decide who makes you jump through more hoops...... 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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did anyone ever end up participating in this study? How did it go?


HUSBAND(ASYMPTOMATIC)

DX BY BLOOD TEST 12-05, NORMAL BIOPSY 1-06

8 YR OLD SON DX BY BLOOD TEST 1-06,

ALSO ASYMPTOMATIC

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