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

Celiac Vaccine? Not For Me


Opa3

Recommended Posts

notme Experienced

hey grodey - i read your link to a blog quoting an article about a study.  ya got me.  gimme the shot.   oh, wait.  there isn't one........

 

eating gluten free is the best shot we have so far?  no?  who knows how long one was going to live if they didn't die.  pesky death   <_<

 

and everybody on this board is going to heal up juuuuust fine, because we're less than 10% of all celiacs  :)


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



Celiac.com Sponsor (A8-M):



  • Replies 95
  • Created
  • Last Reply
Bear with me Rookie

Wow what a gross generalization about many doctors and scientists working together for the ultimate benefit of society. That's not how it works at all.

You think Big Pharma wants to cure disease? Think again.

There may be a few altruistic doctors out there, but Big Pharma isn't going to fund their research. The goal is to produce a drug that the patient becomes dependent upon for life. And that is exactly what this drug is about. People will come to depend on it, and Big Pharma milks the cash cow.

Maybe you should get new glasses. The rose-color tint in the lenses might be affecting your thinking.

Lisa Mentor

I have enjoyed reading this thread. I love a good healthy discusion.

grodeylocks Apprentice

So we shouldn't invest in alternative therapies?

hey grodey - i read your link to a blog quoting an article about a study.  ya got me.  gimme the shot.   oh, wait.  there isn't one........

 

eating gluten free is the best shot we have so far?  no?  who knows how long one was going to live if they didn't die.  pesky death   <_<

 

and everybody on this board is going to heal up juuuuust fine, because we're less than 10% of all celiacs   :)

grodeylocks Apprentice

You clearly have no understanding of how Pharma works, and this is coming from someone who as a Biochemist knows the field in and out. I'm assuming you are also one of those people that believe MSG is the devil and that all vaccinations are bad. You can make your broad generalizations without any backing what so ever because of you're own pessimistic view of the world but however don't ruin it for the rest of us that would like to have a cure or at least some sort of protection from cross contamination.

 

You think Big Pharma wants to cure disease? Think again.

There may be a few altruistic doctors out there, but Big Pharma isn't going to fund their research. The goal is to produce a drug that the patient becomes dependent upon for life. And that is exactly what this drug is about. People will come to depend on it, and Big Pharma milks the cash cow.

Maybe you should get new glasses. The rose-color tint in the lenses might be affecting your thinking.

Adalaide Mentor

You clearly have no understanding of how Pharma works, and this is coming from someone who as a Biochemist knows the field in and out. I'm assuming you are also one of those people that believe MSG is the devil and that all vaccinations are bad. You can make your broad generalizations without any backing what so ever because of you're own pessimistic view of the world but however don't ruin it for the rest of us that would like to have a cure or at least some sort of protection from cross contamination.

 

Pharmaceutical companies pay doctors to promote their drugs. This is a fact which is supported through the fact that there is complete visibility of this. I have seen my (previous) doctor's kickbacks on this. When he made it clear that he was interested in prescribing only name brand drugs, not things there were even generics for, for a medical condition he couldn't diagnose, it was obvious there was a problem with the way things were working. Many here have similar stories. I see the same damn thing with my husband. High cholesterol? Did his doctor ever tell him to change his diet? No, they prescribed a pill. High blood pressure? Did they advise a lifestyle and diet change? Nope. THERE'S A PILL FOR THAT!

 

Why the hell should we take medication for things that don't need to be medicated? The idea is beyond preposterous. I've said before, but because you don't care to read that part of what I wrote, protection from occasional CC is a good thing. For dining out, for traveling, that sort of thing. But a day to day pill for something that is easily remedied by lifestyle change is, in plain English, complete bulls$#& and moneygrubbing.

 

Once a drug is on the market the pharmaceutical company has one interest alone, making back the money they invested developing it. They run a business, they aren't philanthropists. I don't give two craps what industry you're in, you can't change the simple fact that they're in it for the money. That is what running a business is all about. Otherwise it would be called a charity.

grodeylocks Apprentice

Pharmaceutical companies pay doctors to promote their drugs. This is a fact which is supported through the fact that there is complete visibility of this. I have seen my (previous) doctor's kickbacks on this. When he made it clear that he was interested in prescribing only name brand drugs, not things there were even generics for, for a medical condition he couldn't diagnose, it was obvious there was a problem with the way things were working. Many here have similar stories. I see the same damn thing with my husband. High cholesterol? Did his doctor ever tell him to change his diet? No, they prescribed a pill. High blood pressure? Did they advise a lifestyle and diet change? Nope. THERE'S A PILL FOR THAT!

 

Why the hell should we take medication for things that don't need to be medicated? The idea is beyond preposterous. I've said before, but because you don't care to read that part of what I wrote, protection from occasional CC is a good thing. For dining out, for traveling, that sort of thing. But a day to day pill for something that is easily remedied by lifestyle change is, in plain English, complete bulls$#& and moneygrubbing.

 

Once a drug is on the market the pharmaceutical company has one interest alone, making back the money they invested developing it. They run a business, they aren't philanthropists. I don't give two craps what industry you're in, you can't change the simple fact that they're in it for the money. That is what running a business is all about. Otherwise it would be called a charity.

A vaccine wouldn't be something you take day to day. Oh yea pharmaceutical companies are horrible, why don't you tell that to all the cancer patients who are only alive today thanks to the development of modern drugs. Yup you're right. We secretly actually gather around in our labs and come up with ways to make you sick first. Then we purposely come up with drugs that don't cure you only keep you alive enough to keep you buying our product. Yup that's exactly how it works. This reminds me of a great saying, "never argue with an idiot, they'll drag you to their level and beat you with experience."


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

All right, Kids!  This is not a forum to debate the evils or benefits or politics of "Big Pharma".   I think we know where everyone stands on the original question.

GFinDC Veteran

Here are some links for info on the celiac vaccine project.

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

Gemini Experienced

For those of you interested this is a real good breakdown of why being gluten free simply is not enough. Open Original Shared Link

Actually, it is enough for those of us who study this disease and how it works so we can make informed decisions on what and how we eat.  The amount of people who do not return to a normal, functioning life after a diagnosis of Celiac Disease are small, overall, or they have multiple issues/diseases or they haven't learned enough to make good choices regarding gluten free food.  You can't argue this nonsense with me because I came very close to dying 8 years ago and now live a normal life and am very active. If I can do that, most people can too.

 

Besides, because of the overlap in the small intestine, we have a back-up for parts that may not function as well, long term. It's God's little beautiful design built in to prevent starvation, when sections of the small intestine become damaged and may not heal.  Not many people take the time to learn that.  I don't care about all this as I am too busy living to waste any time on what Big Pharma is doing.  I have no desire to eat any other way so it's not an issue for me. Medication is never cheap and I can only imagine how much they would charge for that.

 

But keep on trying to make people even more paranoid that then already are about the gluten-free diet...that seems to be the object around here nowadays.

nvsmom Community Regular

For those of you interested this is a real good breakdown of why being gluten free simply is not enough. Open Original Shared Link

 Those numbers looked alarming but I started checking us against the norm:

 

Where is says 56% of celiacs have poor vitamin status... well, somewhere between 40-75% of people are deficient in vit D, that would put as at about typical.

 

It says we have 72% increased chance of death in the first year if we have intestinal inflammation. A healthy middle aged woman would have a 5% chance of dying in the next 10 years. I'm not a math person, but I'm guessing that means I have a 0.5% chance of dying this year - if I assume that I have inflammation, then I have about a 0.6% chance of dying in my first year gluten-free.... Well "had" since I made it through my first year. ;)

 

Yes, it sucks that we got this disease, and yes it would be great if we could fix some of the permanent damage that we are left with, but it could be so much worse. For starters, we could be one of the majority of celiacs who are undiagnosed!

 

I would be interested in some drug that could repair me. I am not interested in some drug that could make it so I could eat gluten again - gluten has no nutritional value so why bother. It would be nice to have protection against accidental glutening during those times when I have less control over my food, like when travelling, but I don't need it for eating at home most days.

 

I don't see how a celiac vaccination would work... I had symptoms from babyhood, they would have had to vaccinate me as a newborn. And I am one of "those" who doesn't agree with vaccinations for babies or all at once. I have heard wayyy too many first hand "coincidental" medical stories from people who vaccinated against various diseases only to end up with that sickness (like chicken pox) or developed other health problems from it. I honestly don't think they help all individuals.

Gemini Experienced

The vaccine thing.......someone with babies told me that kids in the US get something like 28 vaccines in their first 2 years.  That is insane.  Vaccines can be hard on the immune system, if given in many batches at once.  I really believe that's why we have a proliferance of mental problems with kids today.  The assault on their immune systems must be hard.  I think the ones like polio, diptheria, tetanus...things like that are good but 28 different vaccines?   :blink:  Between this and the messed up diets of kids today, no wonder autism has skyrocketed.  If you hadn't noticed, the overuse of vaccines in this country and explosion of Celiac has also coincided with the explosion in autism and other behavior that is not entirely normal.  I think there is a connection somewhere but proving that is going to be difficult. 

 

I think if you want to use a celiac vaccine, as an adult, you have choices. I think it brave of you to be the guinea pigs..... :)

 

And I apologize for high-jacking this thread but it was about a vaccine to begin with..... ;)

grodeylocks Apprentice

First point. There has never been any proven link that vaccines cause autism. That is a myth. In fact if it wasn't for the extensive vaccination campaigns our life expenctancies would be drastically different. In all honesty I would be more trustworthy of xenobiotics coming out of pharma then I would of herbal supplements coming out of your local health food store as at least the big pharma drugs have to go through extensive testing of which 99 percent of all drugs fail.

 

Second point. The enzyme based therapies would be cheap, and not unlike the digestive enzyme supplements. They would protect against cross contamination and would make it safer for us to eat out.

 

Third point. The vaccine is interesting because it is the first such vaccine being developed for an autoimmune condition and may hold promise in preventing the development of other autoimmune disorders in addition to potentially calming the cycle of inflammation and repair that continues to go on in our gut long after we adopt a gluten free diet.

 

I'm not saying lets get these drugs and eat unhealthy stuff again. I'm saying that this can become another tool in our fight against the disease in terms of protecting us against cross contamination or accidental glutenings. Will the vaccine have major side effects? I can't answer that now, but it doesnt mean that we shouldn't be conducting research on it. Can you really argue though with having a safety drug on you to protect when you eat out or from unseen accidental glutenings? And yes there are many people who take years to heal from this disease. I am a year and a half strictly gluten free and I am still not back to normal. Also, the zonulin modulating drug larazotide acetate shows promise for a multitude of autoimmune disorders and not only celiac disease and could be an amazing breakthrough. For those of you who aren't aware zonulin seems to play a major role in the triggering of celiac disease and regulates the intercellular tight junctions between epithelial cells. It has been shown to be spiked not only in celiacs but is also seen to spike prior to the development of other autoimmune disorders. It may also be the cause of leaky gut which we all know can cause us to be intolerant to all other sorts of foods other than gluten. It is possible that drug could be used to help speed up the repair of leaky gut.

aeraen Apprentice

It seems that pumping ourselves full of drugs to allow us to tolerate gluten is a bit like injecting everyone with a substance to make them glow so we can find them in the dark... rather then just turning on a light. 

 

We found a very simple solution... don't eat gluten.  Why do we need drugs in our systems?

Gemini Experienced

First point. There has never been any proven link that vaccines cause autism. That is a myth. In fact if it wasn't for the extensive vaccination campaigns our life expenctancies would be drastically different. In all honesty I would be more trustworthy of xenobiotics coming out of pharma then I would of herbal supplements coming out of your local health food store as at least the big pharma drugs have to go through extensive testing of which 99 percent of all drugs fail.

 

Second point. The enzyme based therapies would be cheap, and not unlike the digestive enzyme supplements. They would protect against cross contamination and would make it safer for us to eat out.

 

Third point. The vaccine is interesting because it is the first such vaccine being developed for an autoimmune condition and may hold promise in preventing the development of other autoimmune disorders in addition to potentially calming the cycle of inflammation and repair that continues to go on in our gut long after we adopt a gluten free diet.

 

I'm not saying lets get these drugs and eat unhealthy stuff again. I'm saying that this can become another tool in our fight against the disease in terms of protecting us against cross contamination or accidental glutenings. Will the vaccine have major side effects? I can't answer that now, but it doesnt mean that we shouldn't be conducting research on it. Can you really argue though with having a safety drug on you to protect when you eat out or from unseen accidental glutenings? And yes there are many people who take years to heal from this disease. I am a year and a half strictly gluten free and I am still not back to normal. Also, the zonulin modulating drug larazotide acetate shows promise for a multitude of autoimmune disorders and not only celiac disease and could be an amazing breakthrough. For those of you who aren't aware zonulin seems to play a major role in the triggering of celiac disease and regulates the intercellular tight junctions between epithelial cells. It has been shown to be spiked not only in celiacs but is also seen to spike prior to the development of other autoimmune disorders. It may also be the cause of leaky gut which we all know can cause us to be intolerant to all other sorts of foods other than gluten. It is possible that drug could be used to help speed up the repair of leaky gut.

First point...there never will be any research to suggest or even prove that there is a link between vaccinations and autism because then the AMA and drug companies would be open to massive lawsuits.  Just like there are no warnings to women that long term use of the birth control pill "can" increase your risk of certain cancers later in life.  We have had an explosion of breast cancer in the past 30 years and what has been the one constant in those 30 years?  Women are pumping themselves with hormones, long term, to prevent pregnancy (which is a good thing in many cases) and there are downsides to that.  Doctors are not going to bring that up, just like they downplay the side effects of numerous Rx drugs.  I am not saying that all drugs are bad because sometimes the risks do not outweigh the benefits so you have to research carefully and make really informed choices.  I am also not against vaccines.

I though I made that clear but obviously you need to have it re-iterated a number of times for it sink in.  I am just against the number of vaccines that kids are pumped with today.

 

Second point....You really think enzyme based therapies are going to be cheap?  Really?  OTC enzymes, the good ones, are not cheap.  It's all about profit.  They may not be outrageously expensive but cheap?  I am not that naive.

 

Third point.....I have already calmed my immune system down by following a strict gluten-free diet.  I have 4 autoimmune diseases in total and have not developed another one and it's been 8 years gluten-free.  You seem to think this is impossible to achieve without pharmacological intervention.  I disagree.  If someone wants to use any Celiac vaccine, that's fine with me.  I probably won't but why is that a concern to anyone else?

 

Last point.....when you stop behaving like a victim, then you might heal.  What is this pervasive BS that so many people do not heal and lead normal lives?  You act like we cannot do this on our own and live to tell about it.  I was 94 pounds at diagnosis and had no medical intervention when diagnosed. I walked away and did my recovery myself and got further than I would have if I had been scrutinized by the AMA.  Many people are capable of this.  I know about zonulin, leaky gut and all the rest.  But I want to let others know that with persistence and a strict gluten-free diet and, most importantly, a good, positive attitude, you'd be surprised at what you can achieve.  Yes, it does take a long time, but it's the norm.  We live in a society that has taught us to go to the doctor and get a pill and be better in 2 days.  Real health and recovery does not work like that. It's normal for it to take a long time.

 

When you get futher down the road in your healing and knowledge of this disease, you will be able to go out to eat and not be cc'd.  I do not eat out often but when I do, I never get sick anymore and there are many reasons for that.  I think a pill, not a vaccine, for travel would be useful but I would not rely on it all the time because I don't have to.  I have learned not to rely on pharmaceuticals because it's rarely a win-win situation.  If you get all excited about a vaccine, that's fine and I hope it works out for you but don't get all bent out of shape because others have no interest in it. 

Coeliacblog Newbie

This subject divides opinion between Celiac's.

 

For me it's a no if I have to take the vaccine every day of my life. I enjoy my gluten-free diet now, why would I want to go back to quick processed foods??

dilettantesteph Collaborator

The safety and efficacy of vaccines in general has been thoroughly studied: Open Original Shared Link

 

Low vaccination rates lead to an increase in death from preventable diseases.

Open Original Shared Link

Open Original Shared Link

 

Whether or not people want to get a vaccine for celiac disease is up to them.  It is not contagious so it shouldn't make much difference to others.

GFinDC Veteran

Here is a link to a video on the planned celiac disease vaccine.  Dr. Bob Anderson explains how it is planned to work.  It's a long video but is worth watching if you are curious about the vaccine project.

 

 

 

Open Original Shared Link

 

 

frieze Community Regular

Not incorrect at all, and is exactly the reason we need other options in addition to the gluten free diet.  Open Original Shared Link

grodey, study much too short, need more f/u.

frieze Community Regular

The safety and efficacy of vaccines in general has been thoroughly studied: Open Original Shared Link

 

Low vaccination rates lead to an increase in death from preventable diseases.

Open Original Shared Link

Open Original Shared Link

 

Whether or not people want to get a vaccine for celiac disease is up to them.  It is not contagious so it shouldn't make much difference to others.

so, we need to get our kids vac. for things that rarely lead to mortality/morbidity?

MissyBB Explorer

I going back to reply to the original post. I am new here so just got to reading this thread.

 

Vaccine? I think this speaks to exactly what is wrong with our world and why so many more people have celiac or NCGI these days. We are thinking the wrong way as a society. A vaccine just covers up a problem; it doesn't deal with the real problem. And the real problem is one, we have bastardized wheat to such an extent that our bodies have not evolved enough to keep up with the changes in wheat, and two, that we have become a wheat/processed carbohydrate dependent society.

 

We need to get back and look at the real issues here. A vaccine, while handy to some, is not the answer. It's like a band-aid solution. What's next? Will be need a vaccine in the future due to GMO corn, tomatoes, fruit......all because we think we are smarter than the innate Universe that originally designed REAL, honest-to-God food. 

 

More big-pharma and GMO crops are not the answer - they are the problem.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748

    Newest Member

    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.