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

Study For Vaccine.......help


valeriek

Recommended Posts

valeriek Apprentice

Hello

I have not been on for a long time so I am hoping you all can help me.

I have a chance to do a study for a vaccine so I can eat normal again. I was diagnosed with blood and endoscopy. I really didn't have any symptoms. I found out by accident in 09 and have been gluten-free since.

Any way....this study is for a vaccine and I would have to eat gluten cookies every other day for 4 days, then get a vaccine. Thats pretty much the gist of it. ......I think. And I get $800.00 for doing it.

Can any one please tell me if this is a bad thing to do or safe or unsafe.

Thank you so much for reading.

Valerie


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

In my opinion - this is your call.

For me - there is no amount of money that will make me regularly consume gluten - hmmm - perhaps there is a figure - but I think it would involve three or more decimal places ;)

Edited to add: Unsafe gets my vote.

1desperateladysaved Proficient

It isn't for me; I do not trust vaccines in general.  I would suggest that you look objectively at the ingredients in the vaccine to see if it would be wise to put it in your body.

Gemini Experienced

I agree with GottaSki.......I personally would not do it but I have horrible symptoms when glutened.  You have been gluten-free for a while so if you decided to take part in this, you might end up really sick because people tend to become more sensitive the longer they are gluten free.  You will be damaging your intestines to a point so please take that into consideration and don't do it just for the money.  If you do, I wish you the best of luck with everything!

 

I have one question for you.....do you think Celiacs do not eat normally?  ;):)

Pegleg84 Collaborator

My vote would also be no, but it is up to you.

I'd be interested in seeing details of the study? Who is running it? What is the "vaccine" expected to do? (there's been plenty of debate over whether or not a true return to eating gluten is possible, even with drug treatment) Is the risk of weeks/months of being sick worth $800?

There's a lot of questions and a lot of risks there, so do make your choice carefully.

Celiac Mindwarp Community Regular

I would want to know if it offers immunity from effects of eating gluten (unlikely) or what they expect the results to be for you. I would be extra wary if there was no follow up testing in the months after to establish if it has 'worked'. Would it be one off or need repeating? Are they early or late stage trials? How many humans have been tested, with what results? Will one group receive a placebo?

Sounds like you need to know a lot more before agreeing.

Would I do it? No chance.

Ollie's Mom Apprentice

Ummm... Why are you supposed to eat gluten, and THEN get the "vaccine"? How is that supposed to work? That's like getting the measles vaccine after you've already had the measles??

I wouldn't do it.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I say go for it, if you want. Someone has to test new meds.

I would make sure you really understand what you must do and what the follow- up is. It sounds like you don't really know enough to make a good decision. I'm assuming its a reputable medical center conducting it? Make sure they will give you treatment, at no cost to you, if something goes wrong. What your compensation is if you want to stop. What possible side- effects they have identified, etc. There are actual legal protocols in the US for drug/ medical testing. It is irresponsible for them to accept you into a study with the understanding of the testing you have written here.

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. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    2. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    3. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    5. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,232
    • Most Online (within 30 mins)
      7,748

    Linda1964
    Newest Member
    Linda1964
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
×
×
  • 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.