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

carriecraig Enthusiast

I just signed up at Open Original Shared Link for future trials. I'll keep you posted. Looking forward to what happens at the trials this weekend.


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



Celiac.com Sponsor (A8-M):



  • Replies 58
  • Created
  • Last Reply
Guest Viola

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

laurelfla Enthusiast
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.

mswift Newbie

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

mswift Newbie

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.

Guest Viola

Sounds like it is difficult to be qualified.

  • 3 weeks later...
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


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

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

kathy1 Contributor

did anyone ever end up participating in this study? How did it go?

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. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

    2. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    3. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    4. - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      EMA Result

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

    • Total Members
      133,165
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.