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Member Since 17 Mar 2010
Offline Last Active Jun 24 2011 05:48 PM

#701788 #*@($ !#*^% Doctor!

Posted by on 23 May 2011 - 06:46 PM

^^^ word ^^^
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#701775 My Friend Is Coeliac, What If She Decides To Eat A Piece Of Cake?

Posted by on 23 May 2011 - 06:00 PM

I also keep hearing the following from so many ignorant people:

"If a crumb falls onto your plate and ends up in your mouth, you might as well eat a slice of bread!"

celiac is an autoimmune disease. the dangerous effects are caused by an autoimmune reaction in which your immune system attacks your own tissue,
causing imflammation in the gut, the brain, the skin, the nervous system.
you hear about IgG and IgA antibodies, but i've learned recently that it just part of the picture,
theres agglutinin, gliadin, glutenin, gluteomorphin (drug like response), prodyorphin, transglutaminase, glutamic acid decarboxylase.
I don't know much about all of these, but it may explain the varied presentation of symptoms that individual celiacs have.

the idea of healing is to stop the production of these antibodies, and peptides.
a bread crumb doesn't stop the production.
either does a slice of bread.
what does stop it is NO gluten. unfortunately, there is no 'get out of jail free card' by having a little. theres nothing proving that there IS a safe amount of gluten. your system senses the presense gluten in it, and, what does it do?
it produces antibodies to attack your tissue. I'm not sure that it says, "oh, thats not enough gluten for me to get to work"??

I've gotten a panko bread crumb in my mouth by mistake eating sushi a few years ago, and spit it out, realizing what it was, and I was barely able to walk; I had an episode of losing my balance, (ataxia), and the lot of other symptoms. seriously, it was a nightmare situation being out in public, and feeling helpless.
you won't convince ME that the residuals of a bread crumb is a safe amount!!

here's the study: "a milligram of gluten a day keeps the mucosal recovery away; a case study" Fedirico Biagi 2004
cliff notes: 1/60th of a teaspoon of wheat flour (only of which a tiny fraction is gluten there being literally 100s of proteins in wheat),
a day will prevent healing of the gut lining.

If your friend eats out all the time, i'm wiling to go out on a limb here, and say that she isn't to square one of the healing process. 11 years being 'psuedo' gluten-free may be better than gluten bingeing the whole time, but don't be fooled, and confuse this with the healing process.
I know from experience, i did what shes doing for @ 3 years, unfortunatly. I did'nt know about this stuff, and about CC, or the extreme potency of gluten. I did'nt ever knowingly cheat, even, but I now realize i was leaking gluten into my body every day w/ CC, and eating out, and working with it.
I just got sicker, and lost weight.
packaged 'gluten free' foods that have trace amounts have the same effect, imo.

I did'nt start getting better until i made the 100% commitment to make all my own meals, and do everything i can to eliminate gluten from my lifestyle all together. (eating only meat, veggies, and fruit,)

for me, having cooked (and baked, sadly 4 years) for most of my life I feel fortunate that i'm kinda over it when it comes to the foodie scene, and fancy foods, or ethnic food. I've seen it all, and don't feel the draw at all, that seems to be very common among other celiacs.
I started cooking for work as a teenager, and I'm 44 now; I worked at Gary Danko in SF, a michelin 5 star resturant. i worked 60- 80 hour weeks, i burned out a long time ago on food.
I just don't view food as entertainment, or even as art anymore. I just don't care.

what i DO care about is having a rewarding, happy life that doesn't get cut short by cancer.
I've had major depression/ anxiety problems my whole life, and for the first time i feel like it's getting better, and that life for me could turn into something that i had never imagined.
it's so exciting for me. learning this has literally been the best thing that ever happened to me.
it's no contest for me, anyways.
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#701638 My Friend Is Coeliac, What If She Decides To Eat A Piece Of Cake?

Posted by on 23 May 2011 - 09:14 AM

So by what you're saying, is it possible that she might be able to eat the whole piece of cake without her immune system responding negatively or noticing the gluten? I never realised that this is possible...

NO!! I'm saying that it would be nuts for her to eat gluten anything!
just like it would be nuts to walk across a busy street blindfolded.
it's a suicide mission, and you have nothing to gain from it.
you can get to the other side of the street by walking with your eyes open.

I think it's important to learn the science behind why gluten is so bad to get exposed to at all if you are celiac.
it's a 6 month hangover of inflammation every glutening, and we are'nt sure what the impact will be down the road in terms of how suseptible one will be to cancer, and other maladies that celiac opens the door for.
forget about your level of discomfort, or the symptoms as the thing to avoid.
think about the guaranteed inflammation, and the attack on your tissue as the thing to avoid.

^^^ wait a minute; she is consciously willing to damage herself for a triviality??
I'm afraid she may have a self-destructive bent for just entertaining the idea for a second.
It's the equivelent of going without water for a week to see what it's like to die of thirst, imo.

it's sad when you can't reach someone who needs help, but ultimately if we are grown-ups, then everyone makes their own decisions.
however, you can inform your friend as best you can what the risks are, and if you check into it further, I feel like you will find that they are heavy. heavy risks even getting exposed to small amounts.

I used to be a chef, and worked at the top resturants in San Francisco. I had to quit when i learned about celiac, and especially cross contamination.
if your friend is cooking in a gluten environment, and is working with it, she most certainly is getting glutened in trace amounts on a daily basis, anyways, and is'nt realy gluten free yet.
anyways, that was my experience.
I did'nt start showing improvement until I got away from that.
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#701623 My Friend Is Coeliac, What If She Decides To Eat A Piece Of Cake?

Posted by on 23 May 2011 - 08:44 AM

from a risk/reward perspective this is like crossing a busy street blindfolded.

the upside is that you may get to the other side of the street.

the downside is obvious.

is it worth it??
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#701016 Celiac Vaccine Anyone?

Posted by on 20 May 2011 - 09:27 AM

let me first say- that i so agree with everything everyone's posted- great great points- and i find that the members on here seem more in tune than on other health forums (particularly some thyroid forums im in).

but- i DO think Celiac will continue to be "on the rise". of course it's been here forever- it's been in a population of the genes since the beginning of time. and i also agree- that it does not mean our genes our inferior- just that we were not designed to partake in this poison. but i definitely believe it will rise from the 1 in 133, because of the condition of our food & environment.. the triggers our multiplying. that's my view, and my Gi actually theorized the same- saying he wouldnt be surprised if sometime in the future- more of the genetically prone/sensitive 30% start expressing the disease.

I was being snarky about the 'inferior genes'. it's just that that is what is being implied by the medical establishment, even by the term 'gluten-intolerant'. I don't believe there is such a thing as inferior genes, let me be clear. that's nazi talk, and quackery.
the official story about celiac points the finger at you for reacting, instead of at gluten.
why not say that others are 'gluten-resistant'? , and that we are just normal? and whats up with the story that it's an 'autoimmune disease w/ an environmental trigger', which makes little sense to me.
isn't the environmental trigger (gluten) obviously the one at fault, not our genes?? so, in that case, it's not so much a disease as just what happens to you when you get poisined. If you remove the trigger, there is no disease, only a specific gene. >if gluten never existed, celiac would never exist, end of story<
so, if i drink hemlock, and die, it was because i had a disease w/ an environmental trigger? think about it, it's just a fancy way of saying you got poisined.
I trust God knew what he/she was doing when we were concieved, and that our genes are just fine.
it's just semantics, but the point is that the semantics get used to train people to view gluten as the victim, not the culprit.
and thats whats happening when someone suggests a vaccine, or stem cells to fix the problem.
it shifts the blame to you, and your genetics, and the concern seems to be to not tarnish glutens image, and to keep everyone consuming it. (glutens great!! you haven't had the vaccine??); it's apologizing for gluten, which has been proven to cause inflammation in everyone across the board, not just celiacs, or gluten-intolerants. (Robb Wolf)
yes, profit is a part of the motivation, but i believe it's also to make ppl sick, shorten their life spans, make them infertile, and dumb them down. Eugenicists have focused on this task unashamedly; Hitler was a spin off of these folks, (like John Kellogg who promoted and funded eugenics, and invented granola, and breakfast cereal).
nowadays, theres also aspartame (which i am shocked is even legal, it's so dangerous), and floride to do the job, too.

i was being snarky about the mercury, too. but it is in vaccines. can you imagine giving that to a child??
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#700961 Celiac Vaccine Anyone?

Posted by on 20 May 2011 - 04:31 AM

reminds me of a comment a Harvard "educated" doctor made at a lecture i attended recently. she speculated whether stem cell research could get us around this little celiac problem.
i was outraged, but did'nt say anything. it seemed like she was implying that the problem isn't gluten. gluten is just fine, minding it's own buisness.
the problem is us; our 'faulty' genes.
maybe I should just be replaced by a stem cell generated genetically superior version of me, so that gluten can be safe to walk the streets.

this is the same woman who brought a gluten Burrito with her and ate it during the lecture, which i posted about.

maybe they can come up with a vaccine to make my eyes blue, instead of brown, or make me blonde too.
oh, and make sure to put some mercury in it, too.

I'm convinced that the medical establishment selectively looks the other way when it comes to the obvious across the board ill effects of gluten, which behind the scenes they are well aware of. they are complicit in what amounts to a eugenic program, and slowly killing people with wheat is a part of that program. (aspartame is somehow legal)
it seems to me that the mainstrean "gluten free' trend is about making sure people get enough trace gluten to get that job done, even if they wake up, and realize that gluten is bad, it can still be snuck in there.
the eugenicists want us eating gluten free food that has trace gluten, not zero gluten food.
seems to me that if a vaccine does emerge, that it might not be that trustworthy.
the people that develop such things don't have my health and well being in mind at all.
it's about making sure that gluten keeps marching along, and that no one gets out of line.

I've been doing some research into the history of eugenics, and 'health food', and want to write an article about what i've been finding about the connection.
it's pretty chilling.
I don't think it's a coincidence that what i thought was health food my whole life is anything but.
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#698991 I'm Free!

Posted by on 12 May 2011 - 02:22 PM

thats awesome!!
i know what its like to always eat at home by myself, so i can imagine how huge that experience must be for you!
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#697989 Would You Eat Gluten-Free Baked Items From A Shared Bakery

Posted by on 09 May 2011 - 06:29 AM

i was a baker for 4 years and a chef for over 20.
every few days, in a bakery, a thick layer of flour grows on every surface that you can write your name in w/ your finger. every shelf collects a layer of flour from just the airborne flour that settles.
it's everywhere. every time someone scoops some flour into a mixer, or fills a bin with flour, poof, a huge cloud of flour fills the room, and settles everywhere. if you want to eat something from that environment, good luck to you.
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#697983 Ok, Not To Be A Total Skeptic...

Posted by on 09 May 2011 - 06:15 AM

I know it was said before, but...yeah, this is pretty much absolutely true, best we can tell.

- studies on how well cleaning works on machines in the food industry are not done for every type of protein, but rather for a generic 'best guess.' The only study I've found that was done to determine how well cleaning protocols work on our food processing machinery for specific proteins only looked at a few, and discovered that the effectiveness differs by protein. The difference was 15% or less of the protein remaining, as I recall. But I have found no studies on how effective cleaning protocols are on gluten, specifically.

- On a personal level, restaurants and shared households are more of a risk, most definitely. My own household is gluten free completely, down to our soaps, but we have some differing levels of sensitivity. I cannot use any pans, pots, or even plates that the rest of my family uses without scouring them out again, AFTER washing in the dishwasher, or about half the time I get sick off of them. I cannot eat out at restaurants without getting quite sick. My own symptoms are not gastro-intestinal but rather neurological, so they are fairly specific and easy to differentiate from my allergies as a result.

- I don't believe my own difficulties are an isolated incident. A study was published in The American Journal of Gastroenterology last year on how well celiacs are healing. Out of 241 adults, 57% of those who had strict adherence to their diets were still showing intestinal tissue damage after 5 years. (an article re: the study can be found here: http://www.healthnow...ase-never-heal/ )

Personally, from my own experience, one hypothesis on why people are not healing may be that our 'gluten free' diet is not as gluten free as many of us may need it to be. Symptom free may not be 'damage free,' as it were. I do not know if this is the case, obviously, but most doctors are NOT biochemists or very knowledgeable about the food supply, and so do not realize how easily and frequently we can get gluten even on a very strict gluten free diet. As a result, a possible solution is almost never to try an even MORE gluten free diet than one has been previously on.



good post.
also good to know that i'm not the only one who can't eat in resturants. i agree that symtom free is not the same as damage free, as far as we know.
i've heard bad advice on the board before that "; it's ok to eat in resturants that have gluteny kitchens, i'm soooo sensative and i do it all the time, no prob" it's frustrating to hear, when you know that just because you don't feel the damage, does'nt mean it's not occuring.
i have DH, and have read that ppl w/ DH are the most sensative (Dr. Green) , but what does that mean? doesn't it just mean that DH reacts to small amounts of gluten more noticably than other kinds of symptoms. so, is it really 'out of sight/ out of mind??'

and also, gluten is cumulative ; whats the difference between getting a 1000ppm dose and 10 100ppm doses over a few days?
we don't know, really, but i have a feeling that just farming out your gluten exposure into lots of tiny doses that you hope not to notice in the form of discomfort is'nt going to protect you from the damage, and from opening the door for cancer, or whatever else.
  • 1

#697810 Can You Trust A Company's Word About Gluten Free On Non-Labeled Products?

Posted by on 08 May 2011 - 12:04 PM

I don't trust products that claim 'gluten free' to be gluten free, so why would i trust one that doesn't??

i trust sweet potatoes and meat and vegetables (especially with skins) to be gluten free, thats it.
even then i'm not 100% sure. someone could have injected it with a syringe!! (just kidding), but no, i do feel THAT paranoid about gluten the more i realize how pernicious it really is, and the devastating effects its had on my life.
now that i'm getting better, and am excited about the possiblities for myself, i feel willing to do anything to eliminate the risk of gluten exposure .
avoiding a product seems like nothing, really.
  • 1

#697804 Ok, Not To Be A Total Skeptic...

Posted by on 08 May 2011 - 11:30 AM

Being a biochemist (Masters in biochemistry), I also think this is a very controversial issue. The only thing one needs to do to make gluten ineffective is to denature it and regular cooking does not do this but there are other ways to denature proteins. Quite frankly I would be very shocked to hear that chemists do not know the temperature at which it dentures. Cereal chemists especially need to know that number. It would also stand to reason that if someone had a reaction to the minuscule amount that would be available from CC coming after strong cleaning, a major introduction from an oops should be very dangerous. I do get that CC in a kitchen that cooks gluten, ie restaurant, could be an issue.

A good test would be to have someone make something with a brand new spatula that they recently used for something wheat and then washed in their dishwater. Then cook something that is definitely nonreactive without the other person knowing.

Again, not saying it is not possible but it seems highly suspect and possibly something else, ie a corn sensitivity, milk, etc. Or just another case of who knows what got me that time.

a study showed that 1/60th a teaspoon of wheat flour a day was enough to prevent intestinal healing in celiacs.
that makes the amount of gluten in 1/60th a teaspoon super tiny, as there are 100s of protiens in wheat besides gluten.

this is the good part: they havent done studies with even smaller amounts, so it is possible that it's ditto for 1/2 that amount or less.

considering this, is it so strange to think you could get it off a spatula, or cutting board, or a cooks hand who just ate a sandwich, and didnt wash??
is it??

i thought i was gluten free for almost 3 years, and got sicker and sicker, kept losing weight. not until i stopped eating in resturants and eating processed 'gluten free' products that may be slightly contaminated did i begin to show improvement.

my experince echoes what the study proved.
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#686332 What Does Everyone Eat For Breakfast?

Posted by on 24 March 2011 - 08:48 AM

green beans, carrots, a turnip, all steamed. some ground beef.

sometimes, even a salad, w/ avacado.
sweet potato, squash.

I only eat meat, and vegetables, and a little fruit, so...
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#656590 Who Survived Thanksgiving?

Posted by on 27 November 2010 - 10:40 AM

theres a traditional "Turkey day" mountain bike ride where i live.
it's a great way to stimulate a good appetite!
It was nice riding with friends, and giving thanks!

since i'm on a super strict meat, veggies, and (less, and less) fruit only diet, and no grains, and nothing processed, everyday is Thanksgiving for me minus the stuffing!

Just think, Thanksgiving for a lot of Americans is the one day that they take a break from junkfood for dinner!
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#653340 Refractory Celiac Disease

Posted by on 14 November 2010 - 10:03 AM

When I was researching dermatitas herpetiformis, I recall seeing some statistic about how a small percentage of people with DH get no relief from a gluten free diet.
Of course, I was horrified. then I thought that this percentage of ppl could be accounted for as the ppl who didn't completely adhere to the diet, or that thier food was slightly tainted w gluten.
Technically, if you are eating packaged "gluten free" products, you are ingesting gluten, albeit, tiny tiny amounts, yet still enough to trigger the immune response.
I've been eating just veggies, meat, and fruit.
I just hope no gluten can find it's way through the skin of a sweet potato!
  • 1

#646743 Dictating What Others Can Eat Around Me?

Posted by on 16 October 2010 - 10:36 AM

I don't think you can really call it being "glutened" Since your account is somewhat new to the forums I'm guessing (perhaps inaccurately) that you've only just recently made the switch to gluten free in the past few months. During the first couple of months it's almost impossible to tell what has really gotten you and what's just your body adjusting or your mind telling you that you should feel ill.

As any recovering addict can tell you familiar surroundings and smells that were once associated with the offending compound can trigger physiological reactions that technically aren't real. I say technically because you're not actually being exposed to the compound but your brain tells your body it has been and as a result your body acts like it has anyways. This is part of why recovering addicts are strongly advised to change their friends and habits to include new places and activities that don't involve them being around what they've given up, just smelling a beer can make a recent alcoholic have neurochemical changes!

For someone like us this can be pretty difficult because it's not just a matter of staying away from bars, clubs, drug dens or w/e. We would pretty much have to avoid leaving our house altogether! This however is probably not the direction you want to go in while you're trying to make positive life changes and the complete aversion to such surroundings is a double edged sword. In avoiding being near people consuming gluten you avoid the possibility of your brain triggering another false glutening but you also avoid habituating your brain to the concept of being around gluteny environments without eating it yourself. You can ask your friends to avoid all gluteny foods whenever you're around but it's really probably best for the speed of your recovery if you don't.

Gluten can be airborne in the case of an environment with heavy usage of cake or AP flour which is so fine that it can kind of float in the air, however in the case with normal gluten containing objects (like even that same cake flour baked into an actual cake) the gluten itself isn't a volatile compound which means that it doesn't go airborne like a smell does. Some compounds are volatile, some aren't; gluten isn't.

this is simply not true.
the WORST glutenings ive had have been from airborne gluten from bread being sliced, not from flour in the air. it was a huge amount of bread, at a party on a catering job, and it came on like a frieght train. my nose starting running in like 10 seconds, I lost my balance, and got so dizzy that i could barely walk. i had to hold on to things to keep from falling over. And the pain was horrible, it was like someone was tightening a vice on my head! oh, the D didnt start for a fews hours. I've gotten lesser reactions fron just being in a room with gluteny foods like pies,so i have to think the same thing can happen on a smaller scale, too.
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