Peptide Based Immunotherapy

[alicewa]

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!

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.

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?????

[lynnelise]

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!

[sa1937]

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.

[IrishHeart]

Alice,

Are you serious?

What are you doing, hon???

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.

[Jestgar]

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.

[alicewa]

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

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.

[Skylark]

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.

[ravenwoodglass]

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

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?

[Jestgar]

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.

[GottaSki]

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

[IrishHeart]

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??

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!

[GottaSki]

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.

[GFinDC]

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:

Open Original Shared Link

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

[IrishHeart]

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.

[Strawberry-Jam]

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.

[Skylark]

Actually Strawberry_Jam, you might find this super-interesting. There is a celiac vaccine in clinical trials. It's what's behind Alice's homebrew vaccine idea.

https://www.celiac.com/articles/22559/1/ImmusanTs-Celiac-Vaccine-Passed-Phase-I-Clinical-Trials/Page1.html

This is one of the articles looking at which peptides might be useful in a vaccine for DQ2 celiacs that was part of the research leading to the vaccine being tested.

Open Original Shared Link

The problem is that first, there is no proof of concept and second, eating a little soy sauce is a far cry from a recombinant peptide vaccine.

[Strawberry-Jam]

can... can you translate into normal english for me? I only understand about half of what they're talking about.

It is fundamentally different from a regular vaccine tho, it seems, because with a regular vaccine you take it once (or with a few boosters) and that's all you need, but this is a weekly or monthly injection. Well, maybe it's like the tetanus shot, except you need it more often?

also, it doesn't involve gluten per se, but some other aspect of it, so hurting yourself with gluten doesn't seem comparable.

[Skylark]

I'm going to let someone else take a stab at translation 'cause I'm not sure what you are looking for. They're using a bit of the gluten protein, a specific peptide, one a lot of celiacs react to. It does strike me more as desensitization than a vaccine; the gluten tolerance it would induce would be hopefully be permanent though.

[alicewa]

I just finished watching a lecture on the celiac vaccine by WEHI: Open Original Shared Link

Sounds like it will have to be maintained, but as long as you get the vaccine monthly all should be good. Why would it have to be periodic though?

[Skylark]

I really doubt they actually know. Heck, they don't even know that it will work in the first place. This is all very theoretical stuff.

[GFinDC]

@Alice

Thanks for posting the link Alice, very interesting talk by Dr. Anderson. It's neat that people are working on treatments for celiac disease. Really interesting too that there is an idea it might help lead to treatments for other auto-immune diseases. That would be a real big upside for so many people.

@Strawberry

I do know that for hay fever allergies they give shots in a series. So mine were twice a week for a while, then once a week for a while then once a month for a while etc. So this is a standard way of doing it to build up a tolerance.

[alicewa]

Have they started phase II trials for the vaccine?

[Skylark]

Have they started phase II trials for the vaccine?

Dunno. The most reliable place to look is Open Original Shared Link

[GFinDC]

Do keep in mind that the vaccine is not for all celiacs, but a subset. I think he said those with DQ-2 are targeted, but not DQ-8. I hope I got that right and not backwards. So, it will not work for all people, if it does work that is. The testing isn't complete, so we don't yet know if it works.

[alicewa]

No they haven't started the next phase yet. Probably sometime in 2-4 months they said.

I'd love to enrol!!

You're probably not all that interested in what happened with the cupcake, as I'm sure there are others who've done the same thing. I went, and got one yesterday morning and the chocolate mocha honeycomb flavour tasted so good!! The texture was consistent throughout.

I've had friends tell me my cakes taste too gummy - now I know why.

Didn't get all that sick. Had a slight burning sensation in the oesophagus overnight and some intestinal discomfort that doesn't seem to be going away just yet.

Has anyone yet tried a salt water flush. I saw someone else who posted that they did and their gluten symptoms were over. Could I try it, perhaps. What are the risks? Didn't seem like there were any, really...

Won't do it again, I promise.