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Celiac Vaccine? Not For Me
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96 posts in this topic

Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.

About 30% of the population has the gene or genes that are currently recognized as associated with Celiac. They appear to be the type of genes that need a trigger to activate. There is info about that on many reputable Celiac sites.

Not sure what this " unbeliever" stuff is about? We do have a couple of genetic scientists who post on here occasionally. Not all genes are expressed. Some genes, like a recessive one, would not be expressed in the presence of a dominant one. Some genes need a cue to start. This is one of the things scientists/ doctors are trying to find in Celiac. Why one person with the genes gets Celiac and why another doesn't. Or why one person with the genes appears to have Celiac as a child but many don't get it until well into adulthood.

If one of our genetic scientists sees this, perhaps they could explain further for you.

http://www.cureceliacdisease.org/archives/faq/are-having-the-genes-and-symptoms-enough-to-diagnose-celiac-disease

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Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.

I'm adopted so we have no idea where we got all three of my silly genes - nor why ALL of my children and grands got the luck of developing Celiac Disease.

From where we sit - your family is fortunate!

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Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.

I was going to say pretty much what Karen said , but I will ask you this:

Have they had genetic testing done? If not, how do you know they do not carry the genes?

I am the first one in my family to have diagnosed celiac disease,. No one else in my large family has it either--yet ---BECAUSE they have not been tested. Someone has to be first for it to be labeled a "familial disease".

Family members insist they do not have any celiac or gluten intolerance symptoms, yet I see their many autoimmune diseases and their "GERD" and IBS" and mood disorders.

Denial is a powerful thing.

Some of your family members could well be silent celiacs. We have a few members on here. (cool climates, love2travel) who are this type of celiac.They never exhibit typical symptoms (gastro) either, yet they had total villous atrophy upon biopsy.

The key words you use are: "to date anyway". So, you acknowledge that it can trigger at any time in predisposed individuals. It is more than just genes, by the way. It is a confluence of factors, or so the leading celiac researchers believe at this time.

We're not unbelievers. We're just realistic. We have read enough about autoimmunity and Celiac to know the reality of it.

My mother went gluten-free, never bothering with testing because she was wise enough to see her lifelong issues were gluten -related.

Her doc gave her big kudos for taking charge of her health. She feels fantastic.

My Dad surely died from this thing. The best doctors in Boston did not see it in him--but he may as well have had "Hello! I'm a celiac!" plastered on his forehead. He died from complications of this thing well before my symptoms triggered for good and I nearly died from this thing myself. I had no clue what celiac was until 2 years after his death, otherwise, I would have been able to see it in him myself.

One other cousin just went gluten-free on her own, despite negative testing

and has good health for the first time in her life.

My point? You cannot tell if you're a celiac by the absence of typical symptoms

and you sometimes cannot connect the dots between a plethora of symptoms either.

I doubt I'm going to see a reliable, safe vaccine it in my lifetime, but it may well help the future generations in my family. I suspect they are going to need it.

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The day this website starts having the various lobbyist trolls harassing the people for wanting to stick to a gluten free diet instead of being Big Pharma's ongoing lab rats, is the day a lot of other websites are going to start to take its place. My "job" here on earth, having taken decades to figure out what was making me (and others) sick, is not to create a situation for the future where various government entities and government contractors, think it's okay to deliberately ruin the food supply, and then tell people to take a vaccine if they cannot cope with the deadly results.

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Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.

Through routine bloodwork it was discovered I have celiac disease. I did not see it coming whatsoever. I was not sick! You would not believe the shock. My doctor made me have biopsies done, partially so I would believe it. Well, my villi were perfectly flat. t took a few months for it to sink in. After the biopsy scare I made a list of 70 some things I wanted to eat one last time (which is now revised as I can make most myself). Then I went strictly and utterly gluten free. I was diagnosed as a silent celiac which at times has made it difficult as I cannot pinpoint anything. I still do not know what it feels like to be "glutened". In nearly two years it has happened (accidentally) twice. Both times I did not get sick but realized after the fact that the first time the product was mis-labelled; second time happened in a restaurant in Europe. However, I will NEVER, EVER ingest any gluten. EVER. My answer has sure changed from a year ago when I would have been willing to go back to gluten in a heartbeat. Thankfully I discovered this board! A very knowledgable, wise and helpful bunch. I am now older and wiser. ;)

I was the first iagnosed in my family but strongly believe my mom has it. Her symptoms list is L O N G. However, she does not want to know (AKA denial) . One of my second cousins has just been diagnosed, too (maternal side). My family is scared to get tested in case they have it. I find it very sad. If they actually researched it they would most certainly be chomping at the bit to get tested for their futures and the futures of their (little) children. They just cannot imagine not eating gluten ever again.

I firmly believe my diagnosis has saved my life.

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I am another who is the first and only Celiac in my family. With the exception of one sister, no one will be tested, including various GI and mood problems among them.

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My Mum refuses to get tested, clutching her M.E diagnosis. It makes me cry. The more I say the more she digs in. It makes it hard to share what is going on for me, because she thinks I am getting at her. Then there is my Grandma having blood transfusions every 4 weeks because they can't work out why she gets anemic and has low b12.

But I still wouldn't take a vaccine. And if my kids do turn out to have it, I will do my damdest to get them good food, no gmo,. The best thing about this stinky disease is that it has opened my eyes to the food industry. Once you know, why would you go back?

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Then there is my Grandma having blood transfusions every 4 weeks because they can't work out why she gets anemic and has low b12.

THIS WAS MY DAD, Mw!!. He had blood transfusions for 8 years.

There is a reason.

It's malabsorption from celiac.

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Breaks my heart. There seems to be no telling them. How can my mother watch her mother go through that and not even take a blood test to check?

Fear I am heading off topic, so just to put that right.

NO THANKS.

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Breaks my heart. There seems to be no telling them. How can my mother watch her mother go through that and not even take a blood test to check?

Fear I am heading off topic, so just to put that right.

NO THANKS.

You're not heading off topic at all, hon ! It's just more examples of symptoms in our family members who think we're the "only"

celiacs in the family and that those symptoms are "not connected".

It breaks my heart too.

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................. this board! A very knowledgable, wise and helpful bunch. I am now older and wiser. ;)

This topic was debunked. It was labeled a "might be a marketer", "sketchy snake-oil seller", and "lobbyist." for Big Pharma. At least no one called me a grumpy old man. :)

This board, absolutely a 110% group. With your replies, I'm a whole lot wiser too. I need to catch-up with the autoimmune -celiac link.

I'm not changing my position, just going to sprinkle it with a lot more realism/day. thank you

My family will not be tested. My mother is 90 years old and thinks it's her fault. Not to worry mon, it's self inflicted, I assure her.

Make progress, become well and stay well.

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I'm loving all of these posts that are anti-pharma and see right through a smoke screen. I LOVE smart people.

After years of trying to figure out what was wrong with my digestive system, I was actually excited that the solution didn't involve pharmaceuticals. I'm not anti vaccine, but I agree wholeheartedly with the previous comment about not wanting to tinker with my immune system which already has enough issues.

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Wow! I had no idea my two cents would cause such an uproar!

There's still so so much we don't know about Celiac, but it's not something you catch, so I've always had trouble thinking of any kind of "cure" for Celiac as being a vaccine. Maybe they will figure something out someday, but in the meantime we still have to stick to conventional methods (ie: gluten-free diet)

I am basically genetically cursed. There's Celiac on both sides of my family. Thankfully a lot of my aunts/uncles/cousins have been tested. Between both my mother and father's family, there are at least 8 of us (which results in great gluten free goodies at family gatherings). But genetics are weird (and I'm no geneticist), and I'm sure there has to be a first for every family.

And Opa, good on you for getting a great discussion going. I love this board for a reason!

Happy Healing all

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I am basically genetically cursed. There's Celiac on both sides of my family. Thankfully a lot of my aunts/uncles/cousins have been tested. Between both my mother and father's family, there are at least 8 of us (which results in great gluten free goodies at family gatherings). But genetics are weird (and I'm no geneticist), and I'm sure there has to be a first for every family.

And Opa, good on you for getting a great discussion going. I love this board for a reason!

Happy Healing all

Yes, it is a great discussion. Thanks. I don't believe you are "cursed." In fact, you are blessed to have such a great internal support group.

For me, I still have to bring my own gluten-free food to family gatherings.

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For me, I still have to bring my own gluten-free food to family gatherings.

Most of us do! You are not alone. :)

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Vaccine and other types of celiac drugs are amazing. Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. A vaccine would be a life saver and would retrain you're immune system to accept gluten. This vaccine probably will also be beneficial to other autoimmune disorders. Why wouldn't you want to support the development of alternate therapies.

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1.  Every industry has good and bad--Pharma is no different.  I should remind a poster in this thread that there were a lot more people dying of cardiovascular disease in the 60's than there are today.  Thank you "BIG PHARMA" for blood pressure medicine that helps prevent strokes.  The reality is, when society puts money behind research for a disease state, things happen.  People that were dying with AIDS in the 80's have a much better shot at life if they are diagnosed today....  Thanks to...  Wait for it...  Pharmaceutical research.  Most of the algorithms used today by HCP's are the result of pharmaceutical research.  Don't get me wrong, they love to pad the coffers but every now and again we get some great therapies.

 

2.  I will stay on the sideline until more long term data surfaces.  Even at that, I plan to stay gluten free.  I know what my body and immune system are right now today and I can handle that.  Its better than the unknown of tweaking things with a vaccine that will alter my immune system.  Thats a little scary to me.

 

3.  There may be people out there that are having much more severe symptoms than me who need relief that it could provide.  I don't know that it will but I can see someone with refractory sprue looking for some relief.  

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I agree with Karen.

Any newly DXed person is going to see this poll and think "Hell yeah! Gimme the drugs and gimme back my bagels, dude!"

Me?

Hell no.

Eat gluten again? no thanks; I already almost died once.

I agree...the gluten free bagels are great anyway.

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1.  Every industry has good and bad--Pharma is no different.  I should remind a poster in this thread that there were a lot more people dying of cardiovascular disease in the 60's than there are today.  Thank you "BIG PHARMA" for blood pressure medicine that helps prevent strokes.  The reality is, when society puts money behind research for a disease state, things happen.  People that were dying with AIDS in the 80's have a much better shot at life if they are diagnosed today....  Thanks to...  Wait for it...  Pharmaceutical research.  Most of the algorithms used today by HCP's are the result of pharmaceutical research.  Don't get me wrong, they love to pad the coffers but every now and again we get some great therapies.

 

2.  I will stay on the sideline until more long term data surfaces.  Even at that, I plan to stay gluten free.  I know what my body and immune system are right now today and I can handle that.  Its better than the unknown of tweaking things with a vaccine that will alter my immune system.  Thats a little scary to me.

 

3.  There may be people out there that are having much more severe symptoms than me who need relief that it could provide.  I don't know that it will but I can see someone with refractory sprue looking for some relief.  

We are pretty close to at least drugs that will allow us to have a defense against cross contamination and that is amazing., Imagine being able to eat out without having to worry.

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 Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. .

I am curious where you get that 90% figure. I have very severe reactions and have been well able to avoid gluten now for many years. Did it take me a while to get the gluten free lifestyle down? Sure it did. It is however quite possible to avoid gluten once you learn what you need to do.  

There are some of us who have residual damage from years of misdiagnosis and damage to many different body organs. That residual damage doesn't mean we haven't recovered from celiac gluten free. It means that the organs that were damaged were not able to completely repair. Doctors are getting much better at diagnosing us earlier though so the numbers of us that are damaged for years before knowing that gluten was an issue are becoming much lower than even 10 years ago.

I personally would not have an interest in a vaccine. If others want to use one that is their choice. My big fear is that after one is developed doctors will push the pharmacutical 'cure' instead of advising people to change their diet. We already see that in folks with DH whose doctors prescribe Dapsone but never tell them the gluten-free diet will also will do away with the lesions without the risk of side effects.

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Vaccine and other types of celiac drugs are amazing. Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. 

 

 

90%--where did you get that statistic?? I'd like to see the source of that number, please ----because I honestly think that is incorrect.

 

It's not "virtually impossible" to avoid gluten. I do it. :)

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So proud of everyone who replied to these :)

We are Celiacs we are not a problem to be fixed. Finding that gluten was why I was so sick for so long has saved my life! It's saved my son from a whole list of sickly symptoms. We all want the best for our children, by getting this vaccine would be the same as saying something is wrong with him. I don't want him to have a desire to be like everyone else, I want him to be proud if who he is! Finding this has been a blessing to me and my family, I've gotten my mother (who has MS) to see the connection and she has talked to other family members who we suspect to have it all her immediate family who are considering testing. We are certain my uncle ( her brother) died from this. We hate we couldn't have found it sooner, but relieved to put a name on what has been poisioning us. I feel they should put the effort they put into conjuring this vaccine into Celiac awareness so we can save others not change them.

You all had GREAT things to say! I am proud to be a part of this board!!!! You are all some smart (gluten-free) cookies!!! ;)

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So proud of everyone who replied to these :)

We are Celiacs we are not a problem to be fixed. Finding that gluten was why I was so sick for so long has saved my life! It's saved my son from a whole list of sickly symptoms. We all want the best for our children, by getting this vaccine would be the same as saying something is wrong with him. I don't want him to have a desire to be like everyone else, I want him to be proud if who he is! Finding this has been a blessing to me and my family, I've gotten my mother (who has MS) to see the connection and she has talked to other family members who we suspect to have it all her immediate family who are considering testing. We are certain my uncle ( her brother) died from this. We hate we couldn't have found it sooner, but relieved to put a name on what has been poisioning us. I feel they should put the effort they put into conjuring this vaccine into Celiac awareness so we can save others not change them.

You all had GREAT things to say! I am proud to be a part of this board!!!! You are all some smart (gluten-free) cookies!!! ;)

Amen to this!!!  As most savvy celiacs know, it is not impossible to avoid gluten and many more Celiacs heal than those who do not.  Only those who seem to be angry and resentful of this diagnosis seem to think otherwise.

The only thing Celiac really does is make people eat healthier,which many of those without Celiac should strive to do.  I must admit I would love a pill that would protect me while traveling from the dreaded cc but as for a vaccine, no thanks.  I don't know any other way to eat now.

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Really, calling whatever drug therapy they're trying to develop a "vaccine" is a misnomer. If I'm not mistaken, a vaccine protects you from contracting a disease in the first place, usually a contagious one (flu, measels, malaria, etc etc). In order to prevent someone from getting Celiac disease, you'd have to change their genetics!!

 

Just a point.

 

And yeah, wherever this "90%" business is coming from, I'd like to know. Eating entirely gluten free is NOT impossible. A lot of work, but we do it.

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 Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten.

 

 

Did you know one of the rules of this forum is to have a reliable source to support facts that are not common knowledge?  Please share this info with us. 

 

I believe the Univ of Chicago says its about 50% which includes all Celiacs - those that are not very careful as well as those that are careful with their diets.  I will look now for that link and post it here shortly.

 

I know from personal experience - all long time Celiacs I know are healed after a few years on the diet.  But they are careful.  There are a few I know that never get their antibodies normal but they are "take the burger off the bun Celiacs".

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    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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