Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac Study

Frosty-35768

By Frosty-35768
in Related Issues & Disorders

Recommended Posts

Frosty-35768 Rookie
Frosty-35768
Posted

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?

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

Celiac.com Sponsor (A8-M):


Adalaide Mentor
Adalaide
Posted

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 Rookie
Frosty-35768
Posted
  • Author

Did you get to try any of the meds? 

Adalaide Mentor
Adalaide
Posted

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.

  • 3 weeks later...
LauraTX Rising Star
LauraTX
Posted

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.

Archived

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

Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Opinions on my test results/symptoms

      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees. The 600 mcg of Liquid Iodine helped. Also...
    2. Wheatwacked
      - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      If you mean continueing on Gluten Free my answer is yes. She showed significant improvement in her behavior and that translates to a happy family. Do get her tested as sooon as you can. You might want to investigate genetic testing for Celiac Disease. Children recover more quickly than adults. It took my son about 6 months on Nutramigen before going...
    3. Wheatwacked
      - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      Hi @Nicbent35, When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration. With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing. In the meantime, though, continue on GFD. Her health is more important than convincing...
    4. knitty kitty
      - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      3

      Anyone else with very high HDL?

      @plumbago, Are you taking any folate with your B12? Folate helps regulate HDL levels. You may try taking a methylfolate supplement with your B12. If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency...
    5. Nicbent35
      - Nicbent35 replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,889
    • Most Online (within 30 mins)
      7,748
    Missymid
    Newest Member
    Missymid
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Opinions on my test results/symptoms

      By Wheatwacked · Posted

      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      Anyone else with very high HDL?

      By knitty kitty · Posted

      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
×
×
  • Create New...