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A Cure For Celiac!

ScarlettsMommy

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ScarlettsMommy Explorer
ScarlettsMommy
Posted

Is this possible? I was only diagnosed this week and this is my second day gluten free and i already cant take it anymore...so i googled this.

Open Original Shared Link

What are your thoughts???

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sa1937 Community Regular
sa1937
Posted

Is this possible? I was only diagnosed this week and this is my second day gluten free and i already cant take it anymore...so i googled this.

Open Original Shared Link

What are your thoughts???

My thoughts are that I will never take the vaccine (if it gets beyond clinical trials) or ever go back to eating gluten again. Period.

I know that eating gluten-free does take some getting used to and is quite a change for most of us...just plain overwhelming for many. But it does get easier. Just hang in there and ask any questions you may have. We've all been there, done that.

Since you're so new, it's best to stick to a simple whole foods diet (fresh fruits, veggies, meats, eggs) and not try to find gluten-free replacements for processed foods. Many of us also give up dairy right away but I have been able to successfully add it back into my diet.

WinterSong Community Regular
WinterSong
Posted

I would be very skeptical about this, and even if it does make it past clinical trials that won't be for years. If it's only your first few days gluten free, remember that even though it seems hard right now it does get easier with time (especially as you really start to feel better).

Takala Enthusiast
Takala
Posted

I'm starting now to study how to keep myself gluten free, if these so- called "cures" take off, and we get in a situation where food manufacturers aren't providing gluten free foods to the extent they are now.

The same medical profession that cannot diagnose me and cannot recognize the entire disease complex of related side effects - is now going to "cure" me.... not in this lifetime. Note how the study says it is for the HLA DQ2 types, which means a great many celiacs and gluten intolerants could be left out. The same thing happened with the arthritis ATNF drugs, the infusions/injections which were supposed to be the near miracle treatment, and instead from what I have studied on those arthritis boards they work for a certain number of people for a while, then the disease comes back with a vengeance and they have to keep rotating thru so many drugs anyway, they get sicker and sicker, so they end up addicted to a great many other drugs and don't have much of a life. Some treatment. Plus the pharma industry is extremely hostile to the concept of treating disease with diet - they have ruined many a support board and discussion blog. So I could see my future going something like this - "you haven't taken the vaccine? why not? you must not really be a *****" the same miserable attitude I've had with the medical profession and my mostly unmedicated arthritis.

Let them guinea pig on somebody else, I have accepted this, and don't have the imaginary problems Big Pharma wishes me to have so they can sell me something I don't need or want.

Judy3 Contributor
Judy3
Posted

I just read the attachment about the vaccine. Not sure that I would participate if it becomes available. They don't know the long term affects and maybe the vaccine is merely taking the 'pain' out of the equation and the damage is still being done. It would take many years of study including long term affects for me to buy into it. I was sick for too many years to give in to something like that now. Time will tell. Maybe future generations can be helped <_<

squirmingitch Veteran
squirmingitch
Posted

No need for me to even read it. Phama is interested in one thing only. $$$$$$$$$$$$$$$$$ Why do you think things like honey & other natural, easily available things don't get studied much? No $$$$$$$ for pharma companies. They'll lie, cheat, steal 7 kill you as long as they get $$$$$$$$$. No conscience.

Ellie84 Apprentice
Ellie84
Posted

Have you ever received antibiotics for a large infection or any other life-saving medication? I think you should celebrate scientific progress and the comfortable, healthy life it offers you and your loved ones.

OT: I don't think such a vaccine can help existing patients who already have developed the disease. Prevention before celiac disease breaks out could work: it could suppress the genes before they become active.

If there were ever a cure for existing patients I'm not sure whether I would take it. It's become a way of life and I wouldn't want to change ways again.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have you ever received antibiotics for a large infection or any other life-saving medication? I think you should celebrate scientific progress and the comfortable, healthy life it offers you and your loved ones.

OT: I don't think such a vaccine can help existing patients who already have developed the disease. Prevention before celiac disease breaks out could work: it could suppress the genes before they become active.

If there were ever a cure for existing patients I'm not sure whether I would take it. It's become a way of life and I wouldn't want to change ways again.

The use of the word vaccine is a bit of a misnomer. This isn't intended for folks that don't have celiac already it is a treatment to allow diagnosed folks to resume a regular gluten filled diet.

As with others I am a bit leary of big Pharma. I was given pennicyln so much as a child that I now have a life threatening reaction to it. I was also given a new antibiotic that was very pricey and one dose caused hallucination and shut down my pancreas. It took months to recover from that. In the years before diagnosis I was given many, many drugs for symptoms and watched some of them pulled later from the market because of potentially deadly side effects.

In addition how many folks are walking around celiac and undiagnosed because Big Pharma has made 'tummy meds' non prescription so people treat the symptoms and continue to be damaged in ways that can cause nerve and brain issues and even cancer. I actually had doctors tell me just to take multiple doses of immodium daily rather than them actually trying to figure out why I had D 24/7.

I am thankful for the drugs that are really life saving and things like the polio vaccine but all the drugs for symptom relief IMHO keep many who are celiac from actually being diagnosed thus shortening their lives or taking away their quality of life.

beebs Enthusiast
beebs
Posted

personally- i hope it works, i hope they start working on it for dq8 too. I woulnt have it so i could resume a gluten diet, but so that i dont have to worry about contamination anymore. The drs who r working on the vaccine here r passionate about celiac disease, they go all over the country trying to raise awarness and educate the masses on testing for celiac in the first instance, to put them into the category of money grubbing is insulting to say the least, the were out there trying to raise awarness well before there was even a question of a vaccine.

beebs Enthusiast
beebs
Posted

ps-the vaccine is for existing celiacs

smsm Contributor
smsm
Posted

I can understand the bitterness and cynical attitude - I didn't even have GI issues before I was diagnosed (I lived with debilitating pain and crazy dizziness, etc.) and I am so frustrated by the number of doctors that suggested I "stop picking up my children so much", stop nursing so I could take narcotics/steriods, that it is was all in my head, or that I do more "core" exercises. I was almost euphoric when I found out about celiac because I finally had an answer and it didn't involve drugs and going gluten free worked! BUT, I my two kids also were diagnosed and we are a traveling and on-the-go family. Despite unbelievable amount of planning ahead, cc and mistakes do happen and it really brings the pain and issues with the kids all flooding back. I think of small little things that I want for my kids besides convenience (I was wild and crazy in college! How will they kiss someone at a party without having to ask if that person had beer? :) ). If there is a treatment (I like the idea of the pill they are developing that you take just when you need to - I asked about this in a thread just before this one on this forum), I wouldn't dismiss it. I understand that there are people that have lived with this for a very long time and that many people have come to terms with the limitations. Then there is enormous crop of newbies (I am approaching one year at this) and the adjustment, while it does get easier, is not preferable to the ease and convenience of our gluten-filled life. I would never accept a drug or treatment without investigation and thought (I gave birth completely natural - I do NOT believe in taking drugs unless necessary), but I do believe a quality of life issue remains. Let's hope that a drug exists one day for those that want it, and those that don't want can continue on with the diet. Also, I really don't think the gluten-free industry will disappear - there are still many people that need it (allergies, intolerances, autism, people with other autoimmune disorders such as MS, etc.). The demand may diminish, but it won't go extinct.

Katrala Contributor
Katrala
Posted

If it eventually gets past all the testing and gets FDA approval, I'd go for it.

While I know pharmacy companies are more about money than people, etc. etc. I don't believe that most of them are out to get us. They are a business and profit is the bottom line. There are scientists who want to advance their career. If they can advance their career and get published by finding something that helps me - we both win.

If it treats celiac disease it's not about GI issues. It's about damage of the villi. The GI issues are a possible symptom of celiac disease, but not the definition of.

I don't really mind the gluten-free diet that much. It's a little inconvenient at times (and a lot at others,) but it's something I can live with. If this "vaccine" never hits shelves I won't be heartbroken. If it does, I won't be camping out waiting to be first in line, either.

pricklypear1971 Community Regular
pricklypear1971
Posted

I was reading about it yesterday (I think it was in the news section), and the new pr really emphasized "damage to the villi" portion. Since that's just a portion of the problem, it seems, for a lot of patients I doubt it will be a cure-all.

It is unknown, currently, the relationship between neuro symptoms and the villi. Also, what about DH?

I'm sure time will tell, and I sincerely wish them success because so many people could be helped, and I'm sure more advances will come after.

Celtic Queen Explorer
Celtic Queen
Posted
It is unknown, currently, the relationship between neuro symptoms and the villi. Also, what about DH?

That's my question too. Most of my symptoms are not gi related. Will the vaccine prevent the depression, brain fog, ataxia, dh, etc. that are also a huge part of the disease? Will it eliminate the risk of getting other autoimmune diseases in the future?

I guess I'd wait and see how other people are reacting to it before it I take it. I'm curious to see what the long-term effects will be.

Our society is so programmed for the "instant fix." We want everything fixed now with a drug. And that's not how Celiac treatment works. I think that's what's so frustrating for many people with the diet. It's a lifetime commitment.

Celtic Queen Explorer
Celtic Queen
Posted

Forgot to add...ScarlettsMommy - You've only been on the diet 2 days. Your body is still detoxing from the gluten. Hang in there. Scientists have found properties in gluten that are like opiates. So think of it as if you're detoxing from the drug of gluten. It gets easier each day you "stay on the wagon."

Michelle1234 Contributor
Michelle1234
Posted

I'm glad their working on something and having some success. Thanks for posting the link.

Michelle

beebs Enthusiast
beebs
Posted

what i understand is that it is to stop the autoimmune response, so that would include all symptoms would'nt it? Think i may ring and ask and i'll post their response.

ScarlettsMommy Explorer
ScarlettsMommy
Posted
  • Author

beebs i would appreciate that!!

Katrala Contributor
Katrala
Posted

I think there is a misunderstanding at times of what celiac disease is.

Since GI symptoms are the ones that lead folks to the gastro specialty docs, they are the ones that are diagnosing celiac disease, while so many other non-GI symptoms are "ignored" (I'm using quotations since they are often just looked at as something else entirely and not truly ignored.)

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