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If Your Kid Is "glutened" Should You Consider Vaccines?


inskababy

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Lisa Mentor

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It used to be predominantly made from wheat gluten, but is now mostly made from bacterial fermentation; it is acceptable for celiacs following a gluten-free diet.[1][2][3][4]

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PattyBoots Apprentice
Because the Celiac(no "s")immune response occurs in the small intestine. It does not take place in the circulatory system. Different animals, as I said.

That was the very first thing I thought, too, and I couldn't have said it any better myself. We could all be mainlining baguettes (although what would be the fun in that?) and not be affected since it's post-digestion.

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psawyer Proficient

We have had a lot of discussion here about many things. I want to bring the focus back onto the original questions.

The practical question, for which a definitive answer seems to exist, is: Do these vaccines contain gluten? The majority seem to agree that they do not.

The hypothetical question: If they did, in fact, contain gluten, would that make them any more risky for celiacs than for non-celiacs. I realize that there are many debatable issues about vaccine safety--the question is whether celiacs are more at risk.

There is much controversy about vaccines. This board is about celiac disease and the gluten-free diet.

Strongly held opinions are fine, but we must all respect the opinions of others with whom we disagree.

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PattyBoots Apprentice
We have had a lot of discussion here about many things. I want to bring the focus back onto the original questions.

The practical question, for which a definitive answer seems to exist, is: Do these vaccines contain gluten? The majority seem to agree that they do not.

The hypothetical question: If they did, in fact, contain gluten, would that make them any more risky for celiacs than for non-celiacs. I realize that there are many debatable issues about vaccine safety--the question is whether celiacs are more at risk.

There is much controversy about vaccines. This board is about celiac disease and the gluten-free diet.

Strongly held opinions are fine, but we must all respect the opinions of others with whom we disagree.

I think it also begs the question that even IF the vaccines contain gluten, will it cause a reaction due to it not going through the intestines? Regardless if it's a vaccine for children or some sort of preparation we might receive in the hospital as part of treatment, I doubt it.

I firmly believe that if you have a wheat or barley, etc., ALLERGY that you may have a reaction to something administered IV; but if you're "simply" celiac (yes, I know there's nothing simple about it) then it won't make a bit of difference since it's not going through the intestines.

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inskababy Rookie

Just for the record, I do not take issue with anyone disagreeing with me or with a correction of my information. I DO take issue with the tone and the nastiness directed at me by PM. I will forward those to the administrator I suppose, but there's really no need. I'm a grown up, I addressed it and while I was going to leave immediately, I found my need to check if anyone had accurate information (and hence clarification for my child's sake) too important to leave right away in a huff. I will still be departing though...I don't believe this forum is a good fit for me and mine. Many thanks to those of you who were kind enough to reply and correct me with courtesy, and even pm me info I didn't know. My sons and I thank you...

And I did indeed get GSK to say that about glutaraldehyde, but in reference to a study about increased reactions to it in regard to it being used as an disinfectant in endoscopies and sigmoidscopies (I believe 19% celiac rx vs 11% non celiac). She said that although they haven't specifically studied it as a problem with that particular vaccine (I think it was Hep A? Maybe HiB? I don't have my notes in front of me), they do not test it to be gluten free and there was a SLIGHT chance that it was cross linked with wheat proteins/fibers. I did get the line about discussing the ramifications of any vaccine with my doctor.

My son has neurological complications with his celiac disease...namely, moderate apraxia, Wernicke's aphasia, and mild ataxia. All of this has vastly improved on a gluten-free diet...he's made 6 months of progress speech wise in less than a month and all ataxic symptoms have disappeared entirely. I am desperately afraid of reversing that by injecting him with something that I can't trust. I am hyper vigilant about gluten and CC at home, so you can see my hesitation about blithely assuming that because the gluten doesn't get digested that it's not an issue...it might be an even worse complication from being injected straight into the bloodstream for all I know, and I can't find anyone to give me a straight answer. I believed I found a partial one in my research and found I was not entirely accurate, for which I apologized.

If anyone does have TRUSTWORTHY sources so that I can present my fears/arguments/ concerns in an educated way to the doctor, I would appreciate it.

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Roda Rising Star

It sounds like you are a well informed person and I suspect this was not a decision you made lightly. My boys do not have any issues or allergies that vaccines would cause problems for. Of course there is always a small risk to everything and you have to weigh the pros and cons. I am thankful neither one of them has had problems with any of their vaccines. My oldest is 8 and is done with them for awhile. My youngest is 4 and in another six months is due for the last ones before school. Again as I stated before this is a personal choice. Yours might not be the same as mine, but people need to respect your decision. Good luck! :)

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PattyBoots Apprentice
Just for the record, I do not take issue with anyone disagreeing with me or with a correction of my information. I DO take issue with the tone and the nastiness directed at me by PM. I will forward those to the administrator I suppose, but there's really no need. I'm a grown up, I addressed it and while I was going to leave immediately, I found my need to check if anyone had accurate information (and hence clarification for my child's sake) too important to leave right away in a huff. I will still be departing though...I don't believe this forum is a good fit for me and mine. Many thanks to those of you who were kind enough to reply and correct me with courtesy, and even pm me info I didn't know. My sons and I thank you...

And I did indeed get GSK to say that about glutaraldehyde, but in reference to a study about increased reactions to it in regard to it being used as an disinfectant in endoscopies and sigmoidscopies (I believe 19% celiac rx vs 11% non celiac). She said that although they haven't specifically studied it as a problem with that particular vaccine (I think it was Hep A? Maybe HiB? I don't have my notes in front of me), they do not test it to be gluten free and there was a SLIGHT chance that it was cross linked with wheat proteins/fibers. I did get the line about discussing the ramifications of any vaccine with my doctor.

My son has neurological complications with his celiac disease...namely, moderate apraxia, Wernicke's aphasia, and mild ataxia. All of this has vastly improved on a gluten-free diet...he's made 6 months of progress speech wise in less than a month and all ataxic symptoms have disappeared entirely. I am desperately afraid of reversing that by injecting him with something that I can't trust. I am hyper vigilant about gluten and CC at home, so you can see my hesitation about blithely assuming that because the gluten doesn't get digested that it's not an issue...it might be an even worse complication from being injected straight into the bloodstream for all I know, and I can't find anyone to give me a straight answer. I believed I found a partial one in my research and found I was not entirely accurate, for which I apologized.

If anyone does have TRUSTWORTHY sources so that I can present my fears/arguments/ concerns in an educated way to the doctor, I would appreciate it.

While I'm sorry that you're bound and determined to leave, I'm also sorry that you're bound and determined to believe everyone is wrong unless they're giving you the answers you want to hear. At least that's the way you're coming across here. You've already apparently made up your mind that your child won't be getting the immunization; and I'm just as glad I have no children because I'd hate for yours to be a carrier due to his lack of immunization - and that's my right to believe that, too.

I do find it irritating that, while there is no known cause for autism or cure for autism, the same people who will crow that their genetics cause them to be blond or blue-eyed can't fathom that their genetics just might cause the autism as well. And our celiac - because I'm certain my genetics is where mine came from. My mother's problems, my grandmother's problems, my being Irish, my eczema, my grandmother's eczema .... it's all part and parcel.

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inskababy Rookie
While I'm sorry that you're bound and determined to leave, I'm also sorry that you're bound and determined to believe everyone is wrong unless they're giving you the answers you want to hear. At least that's the way you're coming across here. You've already apparently made up your mind that your child won't be getting the immunization; and I'm just as glad I have no children because I'd hate for yours to be a carrier due to his lack of immunization - and that's my right to believe that, too.

I do find it irritating that, while there is no known cause for autism or cure for autism, the same people who will crow that their genetics cause them to be blond or blue-eyed can't fathom that their genetics just might cause the autism as well. And our celiac - because I'm certain my genetics is where mine came from. My mother's problems, my grandmother's problems, my being Irish, my eczema, my grandmother's eczema .... it's all part and parcel.

Interesting that you came to that conclusion from what I wrote. I have NOT made up my mind. When I *thought* they were glutened I had indeed decided against them. But now...I just want the real information, no holds barred. I thought I did have it and wanted to help others by giving them what I got. I can't continue to self flagellate about MSG of all things. I apologized. Mea culpa, mea maxima culpa.

But I won't apologize for leaving a forum. I would leave a party where I didn't know anybody and felt out of place, and wouldn't expect the lady stranger standing in the corner to take that as a personal affront. I'm sorry that you take my leaving as a judgment on you and a forum where you are obviously happy; that's not my intent. I stuck around just to see if someone posted the "ah-ha" source I needed for gluten related issues or celiac problems with vaccines after my information turned out to be incorrect in part. I also wanted those who approached me with a friendliness I appreciated to know that I heard their kindness and knew it for what it was, even if they took issue with my facts. I learned a great deal from a couple of lovely people. Thank you...I suspect you know who you are.

My son is NOT autistic. Again, you're reading into things into my post. He is/was ataxic, apraxic and aphasic. I clearly stated that. You can be ALL those things without being autistic. He is an extremely bright little boy who was hugely frustrated by his body's inability to do what he wanted. But hey, now that you've opened that can of worms, genetics are clearly not entirely responsible for autism -- autism spectrum disorders have exploded over the past thirty years and that sort of genetic change simply cannot take place overnight. We know where my sons got their celiac disease via their full genetic studies as well as my own since my husband is not available for his own study; thank you very much for the passive aggressive assumption that I am denying my genetic "responsibility" for his health issues. FYI, I don't actually believe that autism is *caused* by vaccines so let's not add more firewood to my personal Joan of Arc martyr pyre.

But if Gluten-free Casein-free diet helps those kids, if not having vaccines helps those kids, then amen...glad their parents are doing their damnedest to protect their kids as I am doing for mine. Agatha Christie said "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." If I have to go kidnap a GSK pharmacologist to make them give me the straight skinny on whether I will have to watch my son regress and suffer facial twitching, aphasic stutters, and apraxic frustration, I will. If you HAD a child, especially one who has suffered as mine has with this and severe diarrhea and malabsorption or as my younger one has with multiple intussesceptions, perhaps you wouldn't mind someone reserving judgment on vaccines until they did some further research and treated the whole subject with caution. My older son is fully vaccinated and needs a few boosters if he can have them safely. I'm not some evil genius trying to purposely spread contagion to your putative children, for heaven's sake. I'm a mom. Flawed, I'm sure, but trying ever so hard. Asking questions now that what I thought I knew is not true. My sons are beautiful, sunny and thriving now. I want assurances I won't undo that. I suppose no one here can give me that, and that's all right. I'll go elsewhere <said in a tone of respectful humility, truly>

Now it really IS my cue to exit...I wish I could have done it more gracefully; alas. Blame that on sleep deprivation and worries of a mom left alone by a very long Baghdad deployment with two babies 100 miles from the Arctic Circle, if you must. I'll ask the admin to axe this whole post. Sorry to have caused dissension in the ranks.

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Lisa Mentor

I do wish you will reconsider your departure. Although, on occassion some of our discussion may be a little heated, they are not without great resource sharing. I would suggest you give it more time. You might be surprized, with some answers to your questions.

If not, I wish you and your son continued health in recovery.

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ryebaby0 Enthusiast

I am so impressed that you got GSK to talk to you about the study and the ramifications of their vaccination for your particular child. That is some serious accomplishment. I also share your frustration that oftentimes there are no "definitive" answers, particularly in some areas of medical science, and we are left to our own best judgement. I agree that given your son's set of difficulties, a vaccination utterly bears a serious pile of research. (Not that a complete stranger's opinion is worth a hill of beans)

I'm sorry to see you leave (we always benefit from lots of pov here, and you may have noticed we don't have a deficit of discussion) but hope your son continues to improve. It is a stressful thing, parenting children with illness. We know all too well that the standard lawsuit answers may not apply, and the only thing between health and illness is sometimes enough digging and research on our part. Whatever you need to do to lower that stress pile, do it. Your sons are lucky, lucky boys.

joanna

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Lisa Mentor

If you have not already seen this, you might find it of interest (with regards to injecting gluten):

https://www.celiac.com/articles/21788/1/Fir...alia/Page1.html

And:

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lovegrov Collaborator
Some children have serious illness to deal with and vaccine ingredients would definately make things much much worse. You have to know that a gluten free diet is needed to treat different illness, allergy, and intolerance.

Some people are dealing with Celiac and other diseases at the same time. If you are lucky enough to only have Celiac, I hope you will someday realize how lucky you are.

I was speaking to gluten only, not other ingredients. The original statement was one about gluten in vaccinations and contained misinformation about gluten. That's what I addressed. Perhaps it was a little abrupt, but on the Internet things get spread quickly. I actually wanted to have the post deleted so that it wouldn't get copied to some other site or spread by electronic means.

I am definitely NOT lucky enough to have just celiac, but my other problems have little or nothing to do with gluten.

richard

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mommida Enthusiast

It does appear that previous posts have now been edited.

The comments that went further than "There is no gluten in American made MSG that we know of at this time"

were out of line. Your opinion was not asked for.

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Lisa Mentor
It does appear that previous posts have now been edited.

The comments that went further than "There is no gluten in American made MSG that we know of at this time"

were out of line. Your opinion was not asked for.

If opinions were not allowed here or welcomed, there wouldn't be much of a message board left. What is important is that every voice speak with respect, regardless of other opinions. As was mentioned, it is often hard to convey a "tone" on the internet. I believe that the benefit of doubt should always take the high road.

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mommida Enthusiast

OOps sorry!

I posted before the post was complete.

My full statement was Further opinion was not asked for just help in gathering further information for sharing.

It is a fact individuals have a LEGAL right to opt out of vaccination. Read your on state laws because those laws vary from state to state and under martial law conditions.

This is generally a good bunch here, but when opinions start to mow over the facts of the matter it's time to edit some posts and remember to think about what you are writing.

Looks like we lost a very smart person from the board.

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LexsMama Newbie
I was told glutaraldehyde was bad for celiacs, as it is used as a fixative that might be crosslinked with wheat proteins to increase solubility by Glaxo Smith Kline. Supposedly the proteins in it have been known to cause similar reactions in celiac patients at a higher incidence than in the general population. I have two books that said MSG did contain gluten, and have since discovered that it does not. I'm sorry for the confusion. I never mean to spread bad information. If anything, I was hoping someone had a handy place to look all this up rather than needing to call each individual company and wade my way through their gobbledygook.

But, that being said, this is the third time that I have been unkindly treated on this forum, including topic hijackings and criticism for extended breastfeeding. A gentle "Actually, this is wrong, here's why and here's who to call with better info" would go a long way rather than sending pms to flame people or throw out immunosuppression as reasons for me to ignore the calculated albeit small risk to my child's health through a vaccine. If I can be SURE there is nothing gluten in the vaccines then he will get the boosters. If not, then I am sorry for your child but I refuse to harm mine for yours. I'll be quitting this forum now and unsubscribing from here. Rather than suspecting people of evil, why don't you assume the opposite? I have two newly diagnosed very ill children that I am determined to protect. I ASSUMED we all had the same. Thanks for the early morning stoning...always a great way to wake up.

I was wondering about vaccinations too. My son. Was just diagnosed w/ celiac and I don't know wether to continue giving him vaccines. People shouldn't be so rude you were just asking a question

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Lisa Mentor
I was wondering about vaccinations too. My son. Was just diagnosed w/ celiac and I don't know wether to continue giving him vaccines. People shouldn't be so rude you were just asking a question

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Fiddle-Faddle Community Regular
Because the Celiac(no "s")immune response occurs in the small intestine. It does not take place in the circulatory system. Different animals, as I said.

The initial response to gluten may occur in the small intestine, but the autoimmune response then occurs in the blood stream, according to https://www.celiac.com/categories/Celiac-Di...ance-Research/

Celiac Disease and Physical Activity

* By Claire Atkin

* Published 06/2/2009

* Celiac Disease & Gluten Intolerance Research

"Celiac disease is an autoimmune disorder that is triggered by gluten in the bloodstream,"

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still tiredofdoctors Rookie

"Just for the record, I do not take issue with anyone disagreeing with me or with a correction of my information. I DO take issue with the tone and the nastiness directed at me by PM. I will forward those to the administrator I suppose, but there's really no need."

It is necessary to correct one highly inaccurate statement in this thread, however: antibodies created by ingesting gluten -- specifically antigliadin antibodies - circulate through the blood and are actually able to break the blood / brain barrier, causing significant cerebellar damage. There is one particular type of celiac disease -- labeled "Sprue-Related Celiac" , "Neurogenic Celiac" , "Gluten Ataxia" , "Neurological Celiac" depending upon the researcher -- that has as its sole presentation cerebellar degeneration. As someone who has this particular type of celiac disease, I have kept current with any and all published VALID research available.

If you would like to see these, I will provide them.

Best of luck to you as you pursue this. It was hard enough in the beginning wading through the enormous amount of information and/or misinformation available. I was fortunate that, at that time, there were folks on here who were enormously helpful, nurturing and more than willing to help. Some are still here, but as I have watched, I see very few left. The helplessness I felt when I was regarding my own health was often stifling. I cannot imagine what you are feeling when you are trying to make choices regarding your child.

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