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Peptide Based Immunotherapy


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#1 alicewa

 
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Posted 29 February 2012 - 06:00 AM

Hi, I was looking up the function of some of the future vaccines and drugs for celiac and it seems like they work by using key gluten peptides (ones in barley, rye and wheat) and injecting them at increasing concentrations each week over a timeframe. The idea is to establish better tolerance to gluten so we can have our cake and eat it too! :P

Does this mean that if I put a tiny drop of something with just a very small amount of gluten (e.g. soy sauce) in my first whole glass of water at the beginning of the day, and did this for a number of days and increased the drops to 2, 3 and 4 in weeks 2, 3 and 4 respectively I would be able to tolerate these extremely *tiny* amounts of gluten (at least I would think so).

Maybe I could add a milligram of rye flour to this glass too - and perhaps a small drop malt vinegar as well - and nibble on a single gluten free oat as well...? The water wouldn't taste any different - at least not right away. :rolleyes:

This is what they do with people who have peanut allergies - they use similar practices and many many of them now eat peanuts.

I'd be well below my safe daily gluten intake of 5-10mg a day, I think this should be ok. Especially since everything else I'm eating is gluten free for the time being.

Do you think this would work?????
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#2 lynnelise

 
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Posted 29 February 2012 - 06:04 AM

Celiac disease isn't an allergy, it's an autoimmune disease. I honestly don't think this idea would work and while you may not exhibit symptoms right away you would probably end up with damaging inflammation. The best way to have your cake and eat it to is to buy gluten free cake mix! Pamela's and Betty Crocker are both good! :)
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#3 sa1937

 
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Posted 29 February 2012 - 01:08 PM

Alice, I have to agree with lynnelise. There just isn't any magic bullet for celiac. A lot of us wish it was that easy but since celiac is autoimmune, it's just not possible. The best we can do is stick strictly to a gluten-free diet so we are able to heal.

Are there any particular foods you're craving that we can help you with as far as recipes are concerned? I've been gluten-free for almost two years and must honestly say that I am not feeling deprived. Sure, it's a pain in the butt at times but so are a lot of other things.
  • 2
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#4 IrishHeart

 
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Posted 29 February 2012 - 04:05 PM

Alice,

:blink: Are you serious?
What are you doing, hon??? :rolleyes:
Give it up.

I see you are trying, once again, to find some magical way on the internet to ingest gluten. We keep telling you this is not possible.

Not in any small amounts in glasses of water.

How many threads have your started asking us if there is a way to do this? Linking to various wild remedies and theories? 10, 12, 20?

And we keep telling you the same thing every time.

YOU HAVE CELIAC DISEASE. YOU CANNOT EAT GLUTEN. EVER.

I have to say, I do not understand why you keep doing this, but you are either caught up in the worst case of denial I have ever seen or you are just messing with us.

Invest your energies in learning how to DEAL with celiac and how the disease process works because what you propose here shows you do NOT really understand the autoimmune component at all.

If you do this "experiment"?--you will just make yourself sick.

I do not mean to sound harsh, but really, Alice, you are not helping yourself at all chasing this "dream", kiddo.

If it were possible for celiacs to ingest gluten once again, IT WOULD BE FRONT PAGE NEWS. ;)
  • 4

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 Jestgar

 
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Posted 29 February 2012 - 04:30 PM

While I applaud you for investigating all avenues, I'm pretty sure people have tried pretty much everything. As IH said, if something made a difference, it would be well known by now.

It really does get easier as you get more into the lifestyle, and we are all here to help you learn new coping mechanisms. It really is ok to let go of the past, and there really are very tasty alternatives for just about everything.
  • 1
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#6 alicewa

 
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Posted 01 March 2012 - 10:31 AM

How will the vaccine work then? Isn't it based on exactly the same principle, only in the blood? :unsure:

In any case I feel like I need to go and grab a cup cake at the local cup-cakery near my hotel while I'm away. Just one last time, and I'll let you know how it goes. I've been feeling better in the last two weeks, so hopefully I won't get that sick. Healing time is generally 3 weeks, isn't it?

The cupcakes look too good to ignore while I'm here. :(
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#7 Skylark

 
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Posted 01 March 2012 - 10:43 AM

Pull it together Alice. Do you want to die of cancer or be stuck with thyroid autoimmunity like me? NO CUPCAKES!!! Find a grocery store and get yourself a gluten-free treat until you get home and can make yourself some gluten-free ones. Snickers bars are good!

The vaccine may or may not work. So far it has only passed safety studies and it actually made the people on the highest dose sick. There is no way you can produce something similar in your kitchen because they are using very specific bioengineered peptides. All you'll do is make yourself ill.
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#8 ravenwoodglass

 
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Posted 01 March 2012 - 10:49 AM

How will the vaccine work then? Isn't it based on exactly the same principle, only in the blood? :unsure:

In any case I feel like I need to go and grab a cup cake at the local cup-cakery near my hotel while I'm away. Just one last time, and I'll let you know how it goes. I've been feeling better in the last two weeks, so hopefully I won't get that sick. Healing time is generally 3 weeks, isn't it?

The cupcakes look too good to ignore while I'm here. :(


Well since you are traveling you may want to pick up some Depends for the trip home. Better to be prepared than to ruin your clothes. Hopefully you won't be like I was when I had to do my 2nd challenge after being gluten-free for 2 weeks. I ended up not only with violent D but ended up bleeding from my intestines for 3 days in addition to a flare up of all my other symptoms.
Healing time can vary for different folks. Are you really willing to be sick for 3 weeks just to eat a gluten filled cupcake?
  • 3
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 Jestgar

 
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Posted 01 March 2012 - 12:14 PM

I've been feeling better in the last two weeks, so hopefully I won't get that sick. Healing time is generally 3 weeks, isn't it?

The scary thing is, there is no way to know how sick you'll get. It might be mild, or it might be horrendous. A co-workers BIL ended up in the ER when he decided to challenge. If you really want to eat a cupcake, do it while you're at home, and be prepared to be incapacitated for several days, just in case.
  • 2
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#10 GottaSki

 
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Posted 01 March 2012 - 01:26 PM

Does this mean that if I put a tiny drop of something with just a very small amount of gluten (e.g. soy sauce) in my first whole glass of water at the beginning of the day, and did this for a number of days and increased the drops to 2, 3 and 4 in weeks 2, 3 and 4 respectively I would be able to tolerate these extremely *tiny* amounts of gluten (at least I would think so).


I am fortunate to have several chemist friends whom are among the top peptide scientists in the country -- in fact their help in explaining synthetic protein and peptide science in lay terms helped me solve the crazy puzzle that is my digestive system.

Your comment is incredibly naive -- comparing incredibly complex chemistry of peptide based immunotherapy to adding a small particle of gluten to water????

The answer to your topic question is NO.

I also think if you want to eat gluten so badly that you are spending time researching ways to do so, you are wasting yours along with everyone else's time as you have probably already eaten the cupcake and now are looking for a way to eat more gluten without becoming ill.

Oh...all this cupcake talk...I'm going to make my sinful chocolate, chocolate-chip gluten-free cupcakes with rich chocolate ganache frosting -- of course -- I DO NOT get to eat them because I have to avoid numerous foods in addition to gluten, but at least my gluten-free children and hubby will get to enjoy them tonight :)
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-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

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 IrishHeart

 
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Posted 01 March 2012 - 04:09 PM

Just one last time, and I'll let you know how it goes. I've been feeling better in the last two weeks, so hopefully I won't get that sick. Healing time is generally 3 weeks, isn't it?

The cupcakes look too good to ignore while I'm here. :(


I don't really want to know how it goes, frankly. I think you're being silly, hon.

This is the part you refuse to see: Every time you ingest gluten, you restart the autoimmune response and you risk serious illness.

It does not matter if you throw up, crap your pants, develop a migraine or brain fog-- or feel like a million bucks after you eat that cupcake-- you are STILL endangering your health.
What part of that aren't you getting?? :blink:

You're being purposefully reckless. I do not know your circumstances, but you seem to be naive and unwilling to take care of yourself. You do not expect us to condone this behavior, do you? Because we won't. Sorry!

I suffered devastating health consequences because of celiac. I lost 4 years of my life, slowly dying and headed for a wheelchair and/or a mental health ward because of the impact it had on my brain and my body and I did not know why. No doctor could tell me. I struggled to find an answer and saw dozens of doctors and spent thousands of dollars. I fought hard to figure it out myself, all the while in agonizing pain with impaired cognitive ability. I have worked hard for over a year in grueling PT trying to regain my ability to walk, think clearly, and use my arms again. I cannot stand, sit, lie down or walk without burning pain. I have a long road ahead of me. My doc says it may take years.

You think it will "only be a 3- week effect"?? You need to learn more about celiac instead of searching the internet for a miracle cure that does not exist. BTW, the thinking is that it takes more like 3 months for that inflammation to die down.

You think this is something to play with? You would risk lymphoma or other AI diseases, for what? For a cupcake?! You would risk your health for a cupcake--?! especially when there are delicious gluten-free ones available? Really? <_<

Get a grip, girl. You are behaving like a 6 -year- old. To be CCed accidentally deserves our sympathy. To do it purposefully and tell us about it?--is just absurd and insulting to those of us who have suffered deeply from this disease and work to regain our lives as a result.

I am not usually one to tell others what to do, as it is YOUR decision to do what you wish with your body, but your resistance to accepting your diagnosis is something you need to address--for your own peace of mind.

If there is a vaccine (and they are working on one) you will HEAR about it--as it will be major news!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 GottaSki

 
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Posted 01 March 2012 - 05:21 PM

Healing time is generally 3 weeks, isn't it?

The cupcakes look too good to ignore while I'm here. :(


Oh my goodness...I missed this gem of a follow-up question earlier.

I have been healing for three years and still have a very long way to go.

Alice - IF you are one of the fortunate Celiacs that have improved health and healing with removing only gluten -- I suggest you thank your lucky stars. I in no way mean to diminish how tough it is to completely give up gluten -- it is a very difficult learning curve. Yet for those of us that went undiagnosed for decades and have experienced severe health consequences from ingesting gluten -- improved health and quality of life in exchange for giving up gluten is a no-brainer. Perhaps you should spend more time reading other peoples posts about their struggles to understand how serious the thought of having a gluten cupcake sounds to many on this site.
  • 1

-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

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#13 GFinDC

 
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Posted 01 March 2012 - 07:02 PM

Hi Alice,

No way that will work. They do that sometimes with allergies, injecting a small amount of the allergen into the blood stream to build up a tolerance. Putting it in your stomach is not the same thing. I think it is fine for you to research and learn about celiac treatments, it is good to know what's in development. There are things happening if the gluten-free treatment world. But no big answers just yet. You could do a search on clinical trials and gluten and maybe find one to enroll in. Actually here is a link for you:

http://clinicaltrial...lts?term=gluten

This thread link below post @37 by Backtalk is about a woman who went off the gluten-free diet. She describes what happened to her.

Falling off the gluten-free wagon Post #37
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 IrishHeart

 
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Posted 02 March 2012 - 04:25 AM

Oh my goodness...I missed this gem of a follow-up question earlier.

I have been healing for three years and still have a very long way to go.

Yet for those of us that went undiagnosed for decades and have experienced severe health consequences from ingesting gluten -- improved health and quality of life in exchange for giving up gluten is a no-brainer. Perhaps you should spend more time reading other peoples posts about their struggles to understand how serious the thought of having a gluten cupcake sounds to many on this site.


Amen, sister! (Please see my post before yours.) Perhaps if Alice sees more of these, she will listen to reason.

But maybe not. I have been telling her all this for months.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 Strawberry_Jam

 
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Posted 02 March 2012 - 02:51 PM

i also want to add that the autoimmune reaction of celiac is fundamentally different from the allergic reaction to peanuts.

perhaps such a method would work for a histamine response to wheat. WILL NOT work for an immune system response.


also, vaccines teach the immune system what antibodies to use to destroy a virus. The problem with celiac is that our bodies produce antibodies they SHOULDN'T be producing. So using small amounts of gluten as a celiac "vaccine" just makes the problem worse by creating more antibodies when there shouldn't be any at all. And these antibodies will then proceed to attack the tissues in your gut, brain, nervous system, and skin, just because they can.


I hope you can understand that there is no science behind what you're saying. Perhaps a good book about the science behind celiac is in order.
  • 1

gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011





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