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Would You Try a Vaccine for Celiac Disease?


Photo: CC--Frank Balsinger

Celiac.com 08/26/2016 - News that ImmusanT company is beginning full human trials for their celiac disease vaccine, NexVax 2, brought a number of comments from our readers.

We first reported on their effort way back in 2002, with our story, Australian Researchers Begin Work on a Vaccine for Celiac Disease.

We followed up over the years, with stories in 2009, First Ever Celiac Disease Vaccine Trials Underway in Australia and again in 2011, with articles reporting on the company's efforts to raise investment funds, titled ImmusanT Raises $20 Million in Series A Financing to Advance Immunotherapeutic and Diagnostic for Celiac Disease and on how ImmusanT's Celiac Vaccine Passed Phase I Clinical Trials and in 2012, with Is a Vaccine for Celiac Disease Just Around the Corner?

Comments generally ran toward the affirmative side, with many people expressing excitement or interest in such a vaccine.

From Jared M: I hope this research goes well. The bread, crackers and pizza I can live without. But I would really like to be able to drink a good IPA again. The sorghum beers are horrible. I am quickly growing tired of ciders. I would definitely pay for this treatment if it works.

From Toni: I have celiac. That [a vaccine] would be wonderful.

From Traci: I would like to be involved in a study for this immunization.

From Linda Haas: Can't wait to hear more about the progress made on this vaccine...it sounds very promising!

From Donda: I'm thrilled with the possibility of this coming to market.

From Muriel Weadick: This is what all celiacs have been waiting for, and I am sure I am not alone in wishing the company success.

From Suzanne: A vaccine like this would make it easier to eat out and go on vacation.

Jeanne Burge wrote: I would gladly volunteer for the trials in the US. Hope this works!

Still, a few comments ran toward the less than glowing side, with some people expressing trepidation, or outright distrust toward such a vaccine.

From Cathi: My Question is, "What will be the side effects of this turning off the body's ability to fight Gluten?" Will there still be destruction some place else and maybe worse? So, many times a pill is created to help one thing only to find out that it created another problem some place else in the body. Frankly, I am worried.

From Donna: Absolutely agree with you, Cathi. There is always a problem and side effects with ANY drug! My question is this - WHAT ELSE will be shut off? Will we be even MORE susceptible to other illnesses? I am worried as well!

From Balm: Thanks but no thanks. I'll remain a celiac and continue to eat healthy. While trying to fix one problem, some will end up with far worse problems.

From Jonnys: Stupid idea! Just another way to make more money off of people.

Certainly, those who may have a weakened or compromised immune system should consult with a physician before receiving most vaccines. But, in adults with a healthy immune system, such a vaccine would likely present little or no danger to the recipient. Most people with celiac disease have healthy immune systems, so the likelihood of any adverse reaction will be slight.

Of course, this is all theoretical, even at this point, as vaccine trials have so far not proven how well the vaccine actually works in preventing or curing celiac disease.

So, the question is, if such a vaccine is proven safe and effective, would you be open to trying it, or not?

Celiac.com welcomes your comments below (registration is NOT required).



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57 Responses:

 
Ashley
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said this on
26 Aug 2016 7:06:59 PM PST
My son is only 5 and was diagnosed at 15 months old. He is still so young so yes I would be very happy if there was something in the future he could do pending it had been proven safe and all that. So many things I worry about for his future like his teen years, dating, restrictions on employment for ex military if he wanted to.. Just so many "what ifs".. As a mom I would love to make things as easy as possible for him. I feel terrible when he asks me why God made him different and how gluten just looks so good.. I can usually cheer him up and everything will be ok, but it comes up every once in awhile and just breaks my heart. Will continue to follow the research to see where it goes.

 
Pam
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said this on
29 Aug 2016 1:36:04 PM PST
I agree with you wholeheartedly, Ashley. My son is 9, and was diagnosed when he was 3. I worry about his future as well. Sometimes he'll look at and smell my food, and say that he wishes that he could eat it, and it kills me. He also made me promise that if they do come out with a vaccine, I'll buy him all the gluten foods that he hasn't been able to eat, like Twix and Kit-Kats.

 
JJ
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said this on
29 Aug 2016 4:44:06 PM PST
Why in the world would you eat food with gluten around him?? What the heck did you expect from a little kid? Think!! Poor kid!

 
Kylee
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said this on
27 Aug 2016 12:48:18 PM PST
Yes I would totally be willing to try a vaccine.

 
Margaret
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said this on
29 Aug 2016 6:24:57 AM PST
I´m glad to hear about this...a lot of people are being misdiagnosed and don´t know it.

 
Deborah Ross
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said this on
29 Aug 2016 6:57:49 AM PST
I think the IDEA is terrific, but I have my doubts concerning the effectiveness of a vaccine for my problem (celiac disease) as well as possible side effects. I am in my 60s and already deal with side effects of a blood pressure medication. Because my pediatrician told my mother that I had "outgrown" celiac when i was 10 years old, I ate a normal diet for about 50 years and then suddenly faced CONSEQUENCES. I feel very lucky to be alive with normal digestion - and strict adherence to a gluten free diet, which I spice up with lots of fruit, veggies, herbs, meats, dairy, good recipes, etc. Another doubt I have about a vaccine is this: CD is not caused by viruses or bacteria. What are we inoculating/what are we inoculating against?

 
Karen
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said this on
29 Aug 2016 7:00:16 AM PST
I wouldn't try the vaccine. There are naturally occurring opioids in wheat that can affect a person mentally and cause other neurological problems. I´m sure the vaccine wouldn't address that aspect.

 
Clara Hardin
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said this on
30 Aug 2016 5:02:27 AM PST
I agree what is wrong with going back to growing wheat and others that have not been genetically altered to produce MORE . Then we would not have this problem. I will not take the vaccine.

 
Jeffrey W. Adams
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said this on
08 Sep 2016 11:36:45 AM PST
Currently, commercial wheat is NOT genetically modified. All strains of commercial wheat currently available were created through standard hybridization techniques.

 
Mary Ann
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said this on
29 Aug 2016 8:57:20 AM PST
I was diagnosed with celiac disease in 1957. Knowledge about the disease has come a long long way since then. I would love to be a part of this study.

 
Julie M.
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said this on
29 Aug 2016 9:20:24 AM PST
Yes, if they have trials in Columbia, MO I´m interested.

 
Geane A. Lee
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said this on
29 Aug 2016 12:30:39 PM PST
Yes I am willing to try it. Is it being done in Tennessee?

 
Linda
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said this on
29 Aug 2016 1:07:58 PM PST
I would definitely want to have the vaccine. However, before proceeding I would also need to know any potential side effects or any other effects it could have on the body. Eating gluten free is limiting especially when traveling.

 
Jennifer
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said this on
29 Aug 2016 1:41:11 PM PST
I would try it even if only so I could eat gluten free out at restaurants without fear of cross contamination. I get violently ill with the least amount of gluten and so I don't eat out at all. Waiting and waiting for an entirely gluten free restaurant to come to my area. Please...

 
Jason Kravitz
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said this on
29 Aug 2016 1:45:18 PM PST
Hello,
It hasn't been intentional, but many of my travels in the recent years have been to coastal towns or towns very low in elevation. I have found that drinking or eating any products with gluten/wheat in them has caused no adverse reaction to my GI. So long as I do not travel back to higher elevation cities inside of 24 hours of having had gluten, I have no adverse reactions back at home either. I do not know if my cilia feel the same way at the lower elevations when I have ate or drank products containing gluten, but thought it was interesting to note.

 
Heather
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said this on
29 Aug 2016 1:52:10 PM PST
Not interested. As we continue to pollute the food system, I imagine it will be just another way to ensure that all the progress made in the area of gluten-free will go by the wayside. There are so many issues with the pesticides we are putting onto wheat, GMO strains resulting in even more pesticides being used, that even with a vaccine, I would choose not to eat wheat.

 
Peggy Byrde
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said this on
29 Aug 2016 4:09:36 PM PST
No way in the whole wide world would I introduce pharmaceuticals with side effects... when my own body's miraculous intelligence has already told me clearly I do not benefit from gluten. If I argue with my own immune system, I lose. I am happy and healthy living gluten free.

 
Carrie
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said this on
29 Aug 2016 4:23:29 PM PST
I would absolutely love to be a part of this trial, so tired of all reactions to gluten. Would love to go out to eat and not worry that something will negatively occur.

 
Michele E.
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said this on
29 Aug 2016 4:27:40 PM PST
I would be very happy to be a part of any clinical trial. Hope it is offered someday!!

 
Susan Copeland
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said this on
29 Aug 2016 4:41:29 PM PST
No, I would not take the vaccine for celiac disease. My immune system reacts adversely to all of the grains not just the traditional "gluten" grains.

 
Susan Hochstetter
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said this on
29 Aug 2016 4:46:17 PM PST
I do not believe you have stated if this vaccine is for people with celiac disease or only to keep people without it from getting the disease?

 
Jeffrey W. Adams
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said this on
08 Sep 2016 11:41:31 AM PST
The vaccine is designed to inoculate people who currently have the disease, desensitizing them so that no adverse gluten reaction took place.

 
Audrey
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said this on
29 Aug 2016 6:07:19 PM PST
I would be very interested in this vaccine as I was older when I went gluten free and would love to be able to eat gluten even once in awhile!!!

 
Katherine
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said this on
29 Aug 2016 6:15:12 PM PST
I would love to be included in this trial. I previously was in a trial for a medicine for celiac.

 
Dene Charlesworth
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said this on
29 Aug 2016 8:37:53 PM PST
I would like to eat out without worrying. I would like a twisted. I would like a beer. I would like some KFC. I would like a vaccine please.

 
Ryan Michaels
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said this on
29 Aug 2016 11:33:47 PM PST
Living gluten free is almost impossible for me for certain reasons. It's a hell I would love to see gone forever. I do however, thank God for enduring me through it daily.

 
Ryan Michaels
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said this on
29 Aug 2016 11:36:17 PM PST
Yes, I definately would try a vaccine.

 
Yvonne R.
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said this on
30 Aug 2016 1:16:28 AM PST
This disease has really affected my life in so many ways, all negatively. Many experts say that if you cut out gluten completely, your body will heal itself enough over time that you can reintroduce it into your life. I have found the exact opposite! I have been living gluten-free for the last 6 years, but the other day I took medication for bronchitis and all my celiac symptoms flared up like crazy. Had a look at the ingredients in the antibiotics and found that it contained gluten! What does it help that you look at every food and beverage label and then it gets you where you least expect it?

If anyone ever does clinical trials in South Africa, I would be the first to sign up!

 
Janelle Slavick
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said this on
30 Aug 2016 1:54:32 AM PST
But wait, isn't a vaccine to prevent disease, not cure or reverse it? So if one already has celiac, a vaccine would not help. Is this trial a prevention or a cure?

 
Sandy
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said this on
30 Aug 2016 2:59:45 AM PST
No vaccines, period!

 
Jeffrey W. Adams
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said this on
08 Sep 2016 11:45:15 AM PST
Are you in favor of smallpox, diphtheria, polio, measles, and the myriad other diseases that have killed and crippled millions of people over the centuries? Should we just let those go unchecked?

 
Katherine
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said this on
30 Aug 2016 4:47:40 AM PST
Seeing as vaccines in general don't work....no. I wouldn't put this crap in my or my child's body.

 
Jefferson Adams
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said this on
12 Sep 2016 12:42:33 PM PST
Vaccines "don't work?" Do you have any idea the number of people who no longer die from smallpox, diphtheria, polio, measles, and the myriad other diseases that have killed and crippled millions of people over the centuries? Vaccines do, in fact, "work." http://www.unicef.org/immunization/

 
Shannon
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said this on
30 Aug 2016 4:50:05 AM PST
I am definitely against vaccines and will do none of any kind. If there was another way, I would be down to try it, but not a vaccine.

 
Jenny
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said this on
30 Aug 2016 5:01:03 AM PST
I don't see how the vaccine would work in someone who is already coeliac - as I am - and indeed I am happy to merely avoid gluten, even if inconvenient. However - my son isn't yet coeliac - and it would be useful for him.

 
Jake
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said this on
30 Aug 2016 5:17:13 AM PST
I would absolutely volunteer - the celiac diet is HELL.

 
Sharon
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said this on
30 Aug 2016 5:59:37 AM PST
I would love to be involved with a vaccine study!

 
Busby
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said this on
30 Aug 2016 6:21:48 AM PST
I think that anyone would like to know possible side effects before trying any vaccine. I suspect a trial is the last place you would be informed - it's part of what they are trying to learn. Like one commenter before, I never eat out. I have been mislead, and the resulting stomach upset and brain fog, not to mention fatigue, lasts for days. Nothing is for everyone, but it is to be hoped that this research helps a great many people. I have too many complications, but would otherwise volunteer for a trial. I don´t eat sweets, but miss the occasional Eccles Cake! Thanks for all of the good information. Keep it coming.

 
Connie
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said this on
30 Aug 2016 6:32:48 AM PST
I would love to try it! Hopefully it would get rid of the action my thyroid tries to take if it sees gluten in my bloodstream! It would be nice not to break out in a rash each time a tiny bit of gluten gets into my body! It would be wonderful to eat gluten and not be anemic for years to come!

 
Joy
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said this on
30 Aug 2016 7:15:21 AM PST
I have non responsive celiac and there will be times I'm house bound for a month or more. The Celiac Clinic in Chicago are debating if I should have a nutrient line. Ugh! If a vaccine would help me I would use IT!

 
Jen
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said this on
30 Aug 2016 8:20:45 AM PST
We vaccinate our kids for a variety of things they may never get. It would be wonderful to do so for something they do have so they can avoid the serious and long term affects that even hidden gluten cause.

 
Jill
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said this on
30 Aug 2016 9:35:07 AM PST
I would rather still eat gluten free, but have something available that could be taken prior eating out or special celebrations that would break down (cross-contamination) gluten proteins prior to it reaching the intestines. I don't know that I'd risk side effects of a vaccine, but living a more normal social life without the fear of cross-contamination would make all the difference!

 
LYNN ASHCROFT
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said this on
30 Aug 2016 9:38:38 AM PST
I too would be happy to part of a trial if held in southeast Virginia area.

 
ANN
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said this on
30 Aug 2016 10:51:51 AM PST
NEVER!

 
Maggie
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said this on
30 Aug 2016 12:20:38 PM PST
I would absolutely love to be a part of this!!! I was so sick for years before being diagnosed, now it's come "full circle" so to speak, everything gluten-containing is looking so good!!

 
Ed D
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said this on
30 Aug 2016 1:51:09 PM PST
I too, am a feel a little hesitant in celebrating a vaccine for food with gluten. I am on various medications and am currently dealing with a problem that is possibly a side effect from one of them. I just don't know currently which med it is. I live in Chicago and recently had the opportunity to get involved in a test to block gluten. I declined because some of the people involved might be given a placebo. I was recently re-tested and found my villi have grown back, why would I or any celiac want to resubmit to such an unhealthy situation. It might be better if some of the readers would rethink their willingness to be a medical guinea pig. And yes the drug companies make big money off of people who have health issues. Case in point Epi pens!

 
Christine Heynen
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said this on
30 Aug 2016 2:05:31 PM PST
I have a wait and see approach. If I hear that the vaccine has an overall satisfactory result (meaning that 99% of people with celiac disease respond well to the vaccine, I will definitely ask my GP for her thoughts on it and consider getting it. But if the vaccine makes people sicker than what they would experience after eating gluten, I would definitely pass on it. I would give anything to be able to eat whatever I want again and cut down on my grocery bill. But if it isn't meant to be, I'm not going to hold my breath waiting. So we'll see.

 
Victoria
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said this on
30 Aug 2016 2:35:24 PM PST
A vaccine would certainly make travel and eating out easier, but I would not take the risk because of long-term unknowns. I hope for those interested, though, that it pans out. For the most part, I have come to look at my celiac disease as - the things I can't eat are pretty much the things I shouldn't eat anyway: cake, cookies, bagels, pizza, etc. While label reading to look for hidden sources can be a nuisance, I generally find brands I like, keep tabs on their ingredients, and don't stray too much.

 
Rebecca Snyder
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said this on
30 Aug 2016 5:25:53 PM PST
You know, although I am celiac, I find that minute quantities of gluten do not affect me that much. My husband, who is not celiac, doesn't care for most of my gluten-free alternatives; that means a vaccine treatment would be a great help.

 
Paula
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said this on
30 Aug 2016 9:32:54 PM PST
Copied from immusanT website: "GFD is not a desirable or healthy diet unless there is a medical need to avoid gluten, as the glycemic content and poor nutritional value may lead to increased risk for metabolic syndrome. A disease-modifying approach that resets the immune system when exposed to gluten would allow patients to return to good health and improved quality of life."
Really? Even as a sole reason this would be reason enough for me not to support this company. I hate when people lie to prove their point. But there are other reasons. Mainly it focuses on gliadin tolerance on antibodies level, and symptoms sometimes appear up to several years before elevated antibodies can be detected. So even if this vaccine works in the eyes of scientists, it might not reduce the symptoms at all, just move you from the celiac patient group into non-celiac gluten intolerance group that is still regarded as mere hypochondriacs by many doctors.
So on my part, no thanks!

 
coloradosue
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said this on
30 Aug 2016 9:42:42 PM PST
The Real Question is: Do you like to Gamble? That is what we are being asked to do with something very precious... your life. This so-called vaccine was created to what? To stop a reaction, prevent a reaction, minimize a reaction? Is this vaccine based on key genetic factors that you may or may not be a match to? Every person here needs to know the answer to this and other questions that will asked by the celiac community. I was diagnosed with celiac disease in 2004 after a severe bout with double pneumonia (my CD turned on by a virus). Since that time, I have had 9 severe reactions to gluten requiring ER visits with each reaction worse than the next. I have had fire department personnel accuse me of drug overdosing because they have never seen a celiac reaction. Family and friends not truly understanding that we cannot eat that "special" dinner, dessert, or imbeb that holiday drink. Medical personnel who also don't get those mysterious symptoms we have and what we all go through on a daily basis. The sadness I feel knowing that I passed this cursed disease on to my daughter and my grandsons. And the fear of what may develop down the road. So back to the question.. Would I volunteer to participate in the vaccine? I´m 63 years old. Not much more I can do in this life. For my daughter and my grandsons, and others born tonight, yes I would.

 
Sue Nobles
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said this on
31 Aug 2016 7:56:41 AM PST
I am in my 60's and was diagnosed as celiac 7 years ago and I would be first to volunteer for the vaccine! This disease has been very difficult for me to adjust to. I truly miss good bread. Being raised on a farm, we had fresh, homemade bread, cookies, pies and cakes and I miss the memories I experience when eating these gluten rich foods. And don't get me started on the pasta, although that has been improved by leaps and bounds . But sadly the most important reason for me is economics, I just cannot afford the prices of most GF foods.

 
Julie Mackay
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said this on
31 Aug 2016 12:02:39 PM PST
Gee I would gladly try it. I wish I'd been in the trials, I'm so keen. I'd do just about anything at the thought of alleviating this rotten neuropathy and muscle /joint pain, extreme fatigue (9 months diagnosed CD), so possibly still recovering /repairing.

 
PhilW
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said this on
31 Aug 2016 3:57:33 PM PST
Yep. If they get good results from the trials, I'll try it. Cross-contamination is getting to be an issue for me. Really don't want to live like a hermit and I do miss my beer.
Since the vaccine has to be taken on an ongoing basis, you can always stop using it. The vaccine is establishing a tolerance to dietary gluten via the peptides -

"It is specific for celiacs with the HLA-DQ2 haplotype, accounting for about 90% of celiac patients. Nexvax2 encompasses these three proprietary peptides, presenting them to T cells in the absence of a second, T-cell stimulatory signal. T cell recognition of the HLA-DQ2 bound toxic peptides thus occurs in a non-inflammatory environment, establishing tolerance to dietary gluten. This peptide based approach has been successful in generating tolerance in people with cat-sensitive asthma, and has not been used more broadly because it has been difficult to identify the correct toxic epitopes."

 
murwared
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said this on
05 Sep 2016 12:39:40 PM PST
I have celiac disease and I am 13 years old... is there is any vaccine for celiac? If yes where did we can get it and how much is that?

 
Laurie
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said this on
03 Sep 2016 1:00:22 AM PST
Yes please! I'm in Oregon and I'd LOVE to try it!

 
Tammy
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said this on
06 Sep 2016 7:33:49 PM PST
A vaccine would be a prayer come true! To be able to travel and not worry about where to eat would be freedom. I would most certainly try it.




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