Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A Cure For Celiac!

ScarlettsMommy

Recommended Posts

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???

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,957
    • Most Online (within 30 mins)
      7,748
    Dogdad21
    Newest Member
    Dogdad21
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.