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

By Claire
in Related Issues & Disorders

Recommended Posts

carriecraig Enthusiast
carriecraig
Posted

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
Guest Viola
Posted

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

laurelfla Enthusiast
laurelfla
Posted
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
mswift
Posted

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
mswift
Posted

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
Guest Viola
Posted

Sounds like it is difficult to be qualified.

  • 3 weeks later...
Guest BERNESES
Guest BERNESES
Posted

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
Canadian Karen
Posted

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
kathy1
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.