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Celiac Vaccine..

beebs

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beebs Enthusiast
beebs
Posted

Will you get it when it become available?

It will only be offered to those who are confirmed diagnosed (doh) but I would jump at the chance myself.

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shadowicewolf Proficient
shadowicewolf
Posted

No thank you. I have a strong adversion to anything that requires needles.

stephharjo Rookie
stephharjo
Posted

No thanks, there is a reason we shouldn't eat gluten. No vaccine will be able to change that. Besides who knows what it's side effects will be.

ravenwoodglass Mentor
ravenwoodglass
Posted

Wouldn't touch it. Not only do I not trust it's effectiveness in treating something that is autoimmune and not just blocking the GI symptoms I have also seen so many meds that I have been prescribed pulled off the market that I just don't trust that the 'vaccine' would be safe in the long term. The gluten free diet has no side effects so I will simply stick with that.

I would rather they concentrated on changing the labeling laws so CC risk has to be labeled and gluten ingredients would have to be clearly labeled rather than just wheat.

sa1937 Community Regular
sa1937
Posted

No thanks again. I don't find the gluten-free diet difficult so vaccine or not, I'll just stay gluten-free.

calgarywalker Newbie
calgarywalker
Posted

I've heard the "vaccine" needs to be taken in weekly injections. That might be useful when eating out on vacation in a new city, but other than that, I agree - too many risks with new meds these days. I would even wait 2 or 3 years to see what recalls there are before trying it on vacation.

cahill Collaborator
cahill
Posted

No thank you I am doing well on my gluten free diet. NO injections,no extra health risks, no extra visits to the doc, no extra $$$ handed out to a pharmaceutical company that truly only cares about 1 thing $$$

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beebs Enthusiast
beebs
Posted
  • Author

I'd only consider it once it had been around for a few years and had been proven effective. And even then only if it were a one off vax. I hate being too scared to eat outside of my own house. I went to a party the other night and it was catered and I was too scared to try any of it - even the salads which had dressings - I could tell the caterer really didn't get the whole gluten thing so I didn't want to take the risk. That is the only reason I'd get it. I would still stay gluten free to be honest - but I'd get it in case of accidental glutenings.

T.H. Community Regular
T.H.
Posted

Nope. I don't think they know enough about the disease, IMHO, for this to be safe. I get neurological problems when I ingest gluten. There are few studies that have looked at this, and one of them has found that for those of us with this issue, our bodies can actually make another set of antibodies once gluten hits our bloodstream, and these antibodies attack our nervous system, not our gut.

From what I've read, the tests that are being used to see how well the vaccine is working don't look at the issues I have at all, only the gut problems. Maybe this is a different vaccine, or I've missed something, but it seems like gluten ataxia and other symptoms that aren't solely the gut are getting ignored or viewed as irrelevant when medication is being look at.

It always makes me wonder what else they might be ignorant of as well, honestly.

cyberprof Enthusiast
cyberprof
Posted

I'd only consider it once it had been around for a few years and had been proven effective. And even then only if it were a one off vax. I hate being too scared to eat outside of my own house. I went to a party the other night and it was catered and I was too scared to try any of it - even the salads which had dressings - I could tell the caterer really didn't get the whole gluten thing so I didn't want to take the risk. That is the only reason I'd get it. I would still stay gluten free to be honest - but I'd get it in case of accidental glutenings.

This is my position too. After it had been around for 3-5 years, I'd get it so I could travel more easily - especially to foreign countries (but even US travel is hard - tried eating at an airport lately???), business conferences (where it is impractical to bring my own food), maybe special events. There is so much cross-contamination risk anytime I eat food that is not prepared by me. But I wouldn't get it weekly.

beebs Enthusiast
beebs
Posted
  • Author

This is my position too. After it had been around for 3-5 years, I'd get it so I could travel more easily - especially to foreign countries (but even US travel is hard - tried eating at an airport lately???), business conferences (where it is impractical to bring my own food), maybe special events. There is so much cross-contamination risk anytime I eat food that is not prepared by me. But I wouldn't get it weekly.

Yes, I hear you. At my local mall there is not one place I can eat. I hate that, I can deal with it though. But I really hate being scared of eating, it stresses me out :)

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Nope. I don't think they know enough about the disease, IMHO, for this to be safe. I get neurological problems when I ingest gluten. There are few studies that have looked at this, and one of them has found that for those of us with this issue, our bodies can actually make another set of antibodies once gluten hits our bloodstream, and these antibodies attack our nervous system, not our gut.

From what I've read, the tests that are being used to see how well the vaccine is working don't look at the issues I have at all, only the gut problems. Maybe this is a different vaccine, or I've missed something, but it seems like gluten ataxia and other symptoms that aren't solely the gut are getting ignored or viewed as irrelevant when medication is being look at.

It always makes me wonder what else they might be ignorant of as well, honestly.

This is pretty much my position too. 3-5 years even would not be long enough for me to trust something like this. How will they know if it reduces our risk of cancer the same way that 5 years gluten free does? Will they study the occurance of other autoimmune diseases with this vaccine versus with the gluten-free diet? And what will be the long term (say 20 years from now) side effects of taking the vaccine?

What scares me the most about this is not that the vaccine is being worked on but that once it's available we may get even less co-operation from others on eating gluten-free. I have relatives that have said to me before, "Can't you just take a pill for that?" or "why don't you go to the dr and get some medication instead of torturing yourself with this diet?" These people were hard to convince that there is no medication and the only "cure" is a gluten-free diet for life. And one of them is nurse! Furthermore, what would happen to the gluten-free food industry? I know that we can't completely trust gluten-free products right now in the US but would the controls get more lax since we can take a vaccine? or would gluten-free companies go out of business completely because of fewer customers? Would the few that didn't (or couldn't) take the vaccine be looked at as the "fad diet" crowd? Would we even be taken seriously in any restaurants anymore? We already are fighting so hard to get awareness out about what gluten-free means. This vaccine seems like it would undermine that effort.

beebs Enthusiast
beebs
Posted
  • Author

This is pretty much my position too. 3-5 years even would not be long enough for me to trust something like this. How will they know if it reduces our risk of cancer the same way that 5 years gluten free does? Will they study the occurance of other autoimmune diseases with this vaccine versus with the gluten-free diet? And what will be the long term (say 20 years from now) side effects of taking the vaccine?

What scares me the most about this is not that the vaccine is being worked on but that once it's available we may get even less co-operation from others on eating gluten-free. I have relatives that have said to me before, "Can't you just take a pill for that?" or "why don't you go to the dr and get some medication instead of torturing yourself with this diet?" These people were hard to convince that there is no medication and the only "cure" is a gluten-free diet for life. And one of them is nurse! Furthermore, what would happen to the gluten-free food industry? I know that we can't completely trust gluten-free products right now in the US but would the controls get more lax since we can take a vaccine? or would gluten-free companies go out of business completely because of fewer customers? Would the few that didn't (or couldn't) take the vaccine be looked at as the "fad diet" crowd? Would we even be taken seriously in any restaurants anymore? We already are fighting so hard to get awareness out about what gluten-free means. This vaccine seems like it would undermine that effort.

The coealic society says that 90% of gluten free people in Oz don't need to be on the diet - so I don't think that companies will go out of business. People are starting to realise to that gluten might not be good generally. anyways.

But I get what you are saying about autoimmune disease etc. I mean - we know hardly anything about them or why they happen etc...

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