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
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7 replies to this topic
#2
GottaSki
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"The past is the past...I've got places to be."
Posted 03 April 2013 - 11:38 PM
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.
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.
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
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#3
1desperateladysaved
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Posted 04 April 2013 - 03:51 AM
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.
#4
Gemini
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Posted 04 April 2013 - 07:31 AM
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? 
#5
Pegleg84
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Posted 04 April 2013 - 09:04 AM
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.
~ Be a light unto yourself. ~ - The Buddha
- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice
- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.
#6
Celiac Mindwarp
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Posted 04 April 2013 - 09:12 AM
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.
Sounds like you need to know a lot more before agreeing.
Would I do it? No chance.
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein 
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#7
Ollie's Mom
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Posted 04 April 2013 - 09:40 AM
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.
I wouldn't do it.
#8
kareng
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Argh! Happy Halloween!
Posted 04 April 2013 - 10:29 AM
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.
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.
Celiac.com - Celiac Disease Board Moderator
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