Celiac Study

[Frosty-35768]

I was wondering if any of you have ever tried the trial study through this website celiactionstudy.com?  I started it and have pre-qualified and a local Dr. has already called and wanted me to come in to further examine me and finish qualifying me.  Like most trials you have the real meds and the placebo.  I was just curious if anyone tried it and glad they did or was it a big mistake.  It's been a couple of weeks since they called and I haven't called back bc I am unsure about being a test subject for something they don't even know the side effects.  Any thoughts?

[Adalaide]

They can answer all of your questions at the first appointment. You don't actually DO anything at the first appointment other than let them have some blood if you agree to it, and you do of course reserve the right to back out at any time. (And for the love of God make the appointment in the morning, they'll make you fast and you'll be ready to gnaw your arm off if the appointment is in the afternoon.) I suggest making the call and getting the information at the appointment. It can't hurt to find out more.

[Frosty-35768]

Did you get to try any of the meds? 

[Adalaide]

I made that first appointment because I wanted more answers about the study than I could get on the phone and all the first appointment is, is trading of information. You'll get all of your questions answered and if you agree to begin they want a bunch of your info.

 

I will say that since it's the same company or whatever, if they are dong the same study in your area all they are doing is testing how/if the drug works. They aren't asking anyone to eat gluten, and want participants to continue their gluten free diet to the best of their ability, but that's all stuff they probably told you on the phone.

 

As you already know, it's a double blind study with placebos so no one knows if they actually get the meds or not. If your question is regarding the known side effects of the drug, that question (broken record here) will be answered at the first appointment.

[LauraTX]

I was BEGGED by my immunologist to do this study because I am already his personal patient and he is a study doctor.  But since I have so much other stuff going on, I just couldn't put in the time to do it amongst my other 4 doctors I see and retain my sanity. I would have liked to, but the study period came at a bad time for me.  Go to your first appointment and they will tell you all about it.  If you sign up for the study, do be mindful of any limits on information sharing they may have you sign off on.  I didn't read the entire informed consent as I didn't sign up, so I have no idea if there is something like there in it or not.