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.

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

    • Total Members
      133,017
    • Most Online (within 30 mins)
      7,748

    Kayy
    Newest Member
    Kayy
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.