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Rachel--24

Omg...i Might Be On To Something

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We are back from our weekend at the beach. We had a good time playing in the ocean, although it was very cold!

The memorial/ash scattering went well too.

That's great that it all went well. I'm so glad you could be there for that, and a nice beach time too.

Sherry

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I think you should join or crash the beer party, as it would only add to our collective experience. If my comments are out of line here, I'm sorry in advance. :)

No need to apologize. ;)

Unfortunately I cant join the beer party....its all off limits for me...whether its got lots of gluten, "fermented" gluten, or no gluten at all. Its still gonna mess me up for days.

I might still crash the party though. :lol:

My post isnt signaling any particular person(s) out. I'm simply pointing out a general intolerance for certain "non-traditional" things on this board.

OMG....if I were out there suggesting that I could eat or drink gluten w/out reaction because I took an enzyme....all heck would break loose. I never said this by the way....just the MENTION of an enzyme which breaks down gluten was enough to ruffle some feathers.

If I were out there saying that because of my religion I will knowingly gluten myself as I accept communion...all heck would break loose.

But here's a thread where people are "testing" out the unproven theory that all of a sudden light beer is SAFE...even though its not gluten-free....and the atmosphere is one of EXCITEMENT.

Honestly, I think you'd have to have read some of these other threads to fully understand the hipocrisy.

I'm wondering where all of the gluten-free police are right now?? :unsure:

Why arent they all over you guys...why arent they accusing you of misleading all of the newbie Celiac's on the board?? Why arent they freaking out about you guys purposely consuming gluten??

Heck...they were jumping all over some of us enzyme users for discussing alternative measures for added protection...in case of ACCIDENTAL glutenings. :blink:

So yeah....I'm a little confused as to why its perfectly acceptable to discuss intentionally drinking non gluten-free beer....and if theres no reaction...it might be safe for Celiacs. :huh: On the other hand...its very irresponsible and misleading to discuss using enzymes (designed for breaking down gluten) while continuing to following the diet 100%. :huh:

I apologize if it seemed as if I was making a blanket statement. You were not involved in any of the controversial threads I'm refering to. My rant is not directed at any one person...nor is it directed at those who are experimenting with the beers. ;)

Heck...if it werent for my body being all messed up I might be kicking back with a bud light myself! Although I do prefer the regular stuff. :)

I'm not judging anyone for drinking beer. I'm someone who believes we should listen to our bodies and make decisions based on what is best for us...regardless of what others might think about it.

That being said...what does irk me is the attitude and the rudeness that I often encounter in other threads....simply because people are not open minded.

Apparantly, when it comes to beer drinking...the concern of dangering Celiac's all over the world with misleading info. isnt there. If a Celiac wants to drink beer and share their experience.....its all good.

However, if a Celiac wants to take enzymes to improve digestion and possibly reduce the risk of cc while eating out.....this will turn into a 20 page debate about protecting uninformed Celiacs from harming themselves with enzymes. :blink:

I think that most who can read well enough to find this forum can gather that the thread is not prescriptive.

I agree!!

This is a statement I've made numerous times. I think most Celiac's know how to make informed decisions and most can certainly read through a topic and come to their own conclusions without a bunch of people bashing others who are simply sharing their experiences.

I realize that it may appear as if I was upset with the beer drinkers...for drinking beer. Honestly, I'd only be upset because I cant have one myself! :P

I'm just dumb-founded because the same people who are out to "serve and protect" the Celiac community arent in that thread raising holy heck because there is talk of a gluten containing beverage being SAFE....and people are now consuming that beverage for the sake of experimentation....and NOBODY is freaking out.

You use the words "reckless experiementation".....this type of thing has not been tolerated on other threads....even when there is no reckless behavior involved. Some people take it upon themselves to decide what is reckless and what isnt.

I'm going to have to assume that taking enzymes is reckless and purposely drinking non-gluten-free beer is not reckless at all.....based on the reactions of certain board members.

I'm saying there is alot of hipocrisy on this board....thats all. It has nothing to do with you. ;)

Sorry if I offended....it was not my intention. :)

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I know I've learned lots here. Don't know about the other guy with the fists. :lol:

Believe it or not....its not ALL nonsense that we discuss here in the OMG thread. :D

I'm glad you've learned here. Feel free to jump in and join us anytime you like. :)

The other guy with the fists....he's a little "victory" emoticon. I wanted to steal him from another board so he could do his little fist pumping victory dance all across my post. :lol::lol:

I think I'm in a mood tonight....must be all that apple juice. :lol:

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I'm embarrassed. I'm trying to figure this website out and am still having trouble catching on to where everything leads. It's too bad you didn't get better, I hope you figure it out.

No need to be sorry...you are not the first and definitely won't be the last, lol. Stick around and join in the discussion...we talk about lots of topics here.

Well.....maybe flabbergasted is a better word...or even better...I'm freakin bumfuzzled right now! :blink:

...

Am I the only one scratching my head over this?? :unsure:

Nope, you're not the only one, lol. I often wonder about why some topic bring out the police and some don't. You know...ALL of my doctors suggest taking digestive enzymes...conventional docs, alternative docs, integrative docs, voodoo docs...all of them want me to take them and I certainly would if I could find any that I don't react to! Digestive enzymes are not voodoo, they are pretty mainstream.

I bet you money, though, that some people who *think* they are having CC issues, could actually be reacting to a number of things in their food and maybe even have leaky gut and the enzymes are just helping break it all down more efficiently. For others, it could be the CC. Hard to know.

I often think this as well.

Oh...and to anyone who likes to read this thread just so that they can use these topics for laughs in other threads...I wont name names...you know who are. ;)

Gosh I miss a lot when I go to sleep, lol. :lol:

We are back from our weekend at the beach. We had a good time playing in the ocean, although it was very cold!

Sounds like a great time!!!

Believe it or not....its not ALL nonsense that we discuss here in the OMG thread. :D

Yeah, you have my spinning head to confirm THAT! :lol: I can't take in half of the scientificness...I bookmark and hope someday to be able to understand it.

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Rachel.

That is why i dont stray from this thread much anymore. I cant handle how some people are ummmmm soo ummmmmmmm lol.

I cant beleive i have been paying an forutne for redbridge when i could be drinking bud light. I have an idea i can pop an enzyme then drink one lmao.

Everyone,

Im still having awesome days. I cant beleive how good i have been feeling. Im sure i will have an setback soon, dont i always lol

I have bad news to report tho. We had an death in the family yesterday. My poor little confused princess hamster passed away. I was so sad that she passed away. I was up all night thinking about her and her cute little face. Now the dora hamster is all lonely.

paula

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No need to apologize. ;)

Unfortunately I cant join the beer party....its all off limits for me...whether its got lots of gluten, "fermented" gluten, or no gluten at all. Its still gonna mess me up for days.

I might still crash the party though. :lol:

My post isnt signaling any particular person(s) out. I'm simply pointing out a general intolerance for certain "non-traditional" things on this board.

OMG....if I were out there suggesting that I could eat or drink gluten w/out reaction because I took an enzyme....all heck would break loose. I never said this by the way....just the MENTION of an enzyme which breaks down gluten was enough to ruffle some feathers.

If I were out there saying that because of my religion I will knowingly gluten myself as I accept communion...all heck would break loose.

But here's a thread where people are "testing" out the unproven theory that all of a sudden light beer is SAFE...even though its not gluten-free....and the atmosphere is one of EXCITEMENT.

Honestly, I think you'd have to have read some of these other threads to fully understand the hipocrisy.

I'm wondering where all of the gluten-free police are right now?? :unsure:

Why arent they all over you guys...why arent they accusing you of misleading all of the newbie Celiac's on the board?? Why arent they freaking out about you guys purposely consuming gluten??

Heck...they were jumping all over some of us enzyme users for discussing alternative measures for added protection...in case of ACCIDENTAL glutenings. :blink:

I apologize if it seemed as if I was making a blanket statement. You were not involved in any of the controversial threads I'm refering to. My rant is not directed at any one person...nor is it directed at those who are experimenting with the beers. ;)

No need to apologize Rachel - I love your posts! I have learned so much from you, and some of the regulars on this thread. I'm sorry if I was out of place. I don't want to offend anyone, but if we can't talk openly about our experiences and question or test limits, then this is not a forum it is a police state! I will go and look up other threads. I am somewhat of a newbie here, but I think my reaction would have been the same if I observed people jumping all over someone and censoring others merely for questioning or discussing use of enzyme pills. They are as free to disagree as you are to use one and talk about it. I come on this site to learn and discuss, and I appreciate people who ask questions and push the envelope. The medical and regulatory professions certainly aren't doing it for us.

People who shut down open discussions deprive the celiac disease/GI community an important source of information - ourselves! It is ludicrous to think that empirical, exploratory or non-mainstream topics are off limits and that people cannot discern for themselves what is established and what is still experimental. It is best to have all information available to decide what is best from an individual standpoint, rather than an edited or censored version of "experience".

I'm sorry that people jumped all over you for discussing alternative measures and the enzyme pill. If they have done that to you, it is only a matter of time before they do it to others. I support free speech, free thinkers, and freedom of choice. It is going to become a bit tedious if others appoint themselves the police and gatekeepers of the "celiac brand".

No worries Rachel. I'm glad we're good. :)

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Rachel,

Its amazing to me that as we review these things over and over, about the methylation and stuff, that it gradually DOES start to sink in!

I think I have some disruption but it seems a bit different than you and Nancy. Plus I do have the infections as issues and most likely celiac to contribute to the malabsorption as well as the metals.

I didn't tolerate Betaine, I have been low in glutathione, taurine and cysteine. Not sure about the folinic acid, seems like it is in something I am taking. I tolerate MSM, taurine, glutathione but not cysteine.

Sherry

Hi all-

I have been really sick so haven't posted.

Unfortunately for me, these sulfation/methylation things don't sink in for me. I don't think I am a stupid person, but no matter how many times I read this stuff, I do not understand it. I am part of the yahoo group "sulfur stories" and most of the time I feel like I am reading a different language. I think this is why, concerning this, I get so discouraged. All of my life (all of our lives ) I have had to figure out what was wrong with my health as I diagnosed my graves, PCOS and celiac, then find the doctor to help me treat it. But, this sulfation/methylation thing, I can't wrap my brain around...so how can I even begin to get the help I need.

My naturopath ran the Doctor's Data amino test (per my request) about 7 months ago and got NO info out of it!!! I am the one who noticed the high cysteine levels. I have liked this doctor, but she is clueless about these blocked pathways...which means finding ANOTHER doctor, going through all of this AGAIN.

Rachel- what you posted about the hormones being broken down by the sulfation...makes sense to me. I ended up in the ER many times about 8 years ago when my PCOS doctor put me on estrogen (unopposed by the way). And now my naturopath tried my on DHEA and I am not doing well.

Sherry- I didn't tolerate betaine either. Got immediate burning up to my esophagus.

Also- there is a thing called being under and over methylated...and if you are over methylated, like me, you need to stay away from methionine and probobaly all of the other cysteine things...and we do well on folic acid, I am supposed to do well on B12, but I don't. We should avoid TMG and DMG. WE have low basophils. And supposedly have low histamine levels. We supposedly have copper overload and folic and B12 deficiencly. These types have food and chemical sensitivies.

Under methylated people stay away from Folic acid as these people have very high basophils and high folic acid but do well on SAM-E, methionine, B-6. These people have high histamine levels and have seasonal allergies.

This is the only thing I read that makes any kind of sense, but is only one piece of the puzzle.

Nancy

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Yes, the debilitating fatigue is a HUGE problem for me ... one of the major symptoms I have now. The fatigue started out slowly .... then became overwhelming.

I did see improvement going gluten-free. Drastic improvement, but then I slid downhill again. So, that is different than you.

I don't know if you'll have to address the Lyme more than you have or not, but I do think it's a player, even if it's a small one. Definitely not something to pretend is not there. ;) But yeah, keep doing what you're doing and make yourself stronger ... you might take care of everything else and have your own immune system finally strong enough to take care of the Lyme. I've done that before myself.

I couldn't agree more. I have had issues all of my life- you've all seen my signature, but then came the vestibular neuritis, dizziness, ear pain, pressure, popping, head pressure and fullness, loss of hearing, sensory overload, and after that came the dabilitating fatigue.

I told my Mom that I have a new theory. That all of my life I have had just two Lyme and Bartonella or Lyme and Babesia, but something happened which put me in bed for the past two years, I think that may be a newer infection from the summer of 2006 (I spent a lot of time outdoors in upstate NY) made the other two much, much worse. I mean I was able to work, although with difficulty, up until November 2006. What changed?

I do believe fatigue - like we experience- where you literally can't move, is babesia?? I had to stop the Mepron/Zith a couple of times just for one dose and the fatigue was paralyzing. What a difference. It is not like I feel amazing with it, but so much weaker without it.

I operate under the assumption that I will be needing to kill off these suckers for the rest of my life in one way or another and hopefully, in time, with just herbs. But they have to be kept in check for ever.

I have high hopes for the herb Japanese Knotweed. Can't read enough good stuff about it. It has many amazing chemicals, but what I like so much is that it gets blood flowing in places where it doesn't usually get to so well, so it helps carry the blood with whatever antimicrobial that we've put in the blood to the hard to reach places. It also enhances whatever antibiotic, antiparasitic we are taking. It is also great for bartonella. Anyway, when I take, my herx is MUCH worse, so I believe in it.

So- this may be a good option for some.

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The big excitement today a swarm of police across the street, but I never did find out what it was for because my "outing" happened at the same time, lol. My outing...the AAA truck came to start my car. :lol: Yep, I tried starting it yesterday but it wouldn't start. I tried again this morning, but again it wouldn't start, so I had to call AAA. They came right in the middle of the police arrival (probably at least 4-5 police vehicles). Then after my car was started I had to leave it running for 30 minutes...so I just propped my feet up and relaxed in my car. :P I'm back inside now with ice on my foot watching the olympics which are kind of exciting this year.

I have bad news to report tho. We had an death in the family yesterday. My poor little confused princess hamster passed away. I was so sad that she passed away. I was up all night thinking about her and her cute little face. Now the dora hamster is all lonely.

Awwww, so sorry about the little princess. You could do what my friend used to do. She had two birds, a male and a female...I can't remember their names now, but when one would die she'd buy another and give it the same name as the one who perished, lol.

People who shut down open discussions deprive the celiac disease/GI community an important source of information - ourselves! It is ludicrous to think that empirical, exploratory or non-mainstream topics are off limits and that people cannot discern for themselves what is established and what is still experimental. It is best to have all information available to decide what is best from an individual standpoint, rather than an edited or censored version of "experience".

I couldn't agree with this more!!!! That is exactly what I think. I can certainly understand wanting to provides all sides of an issue, but I see no reason why that has to be hostile.

I have been really sick so haven't posted.

So sorry you've been so sick!

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The big excitement today a swarm of police across the street, but I never did find out what it was for because my "outing" happened at the same time, lol. My outing...the AAA truck came to start my car. :lol: Yep, I tried starting it yesterday but it wouldn't start. I tried again this morning, but again it wouldn't start, so I had to call AAA. They came right in the middle of the police arrival (probably at least 4-5 police vehicles). Then after my car was started I had to leave it running for 30 minutes...so I just propped my feet up and relaxed in my car. :P I'm back inside now with ice on my foot watching the olympics which are kind of exciting this year.

Awwww, so sorry about the little princess. You could do what my friend used to do. She had two birds, a male and a female...I can't remember their names now, but when one would die she'd buy another and give it the same name as the one who perished, lol.

Too bad u missed what happened lol. Were any of the cops cute lmao

The kids wanted an male and female and i refused, i didnt want an litter of new ones every month lol. My dtr no longer wants another hamster, she wants fish now lol. She had to learn the hard way that you cant throw hamsters up in the sky, cause they might hit an tree. So she knows she cant take fish out of their tank, then she thinks they wont die like princess.

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Uh, that's a normal reaction to apple juice ... a whole bottle would give anyone D!!! :P:lol:

Yeah....thats what I figured. I havent had fruit juice in a couple years....but with me there is just no "easing" into it. I tried...next thing I knew the bottle was gone...and now theres a new one in the fridge. :rolleyes:

Math? I could totally take math over this Methylation stuff! I do love to learn about health related things, but this is going to require some major brain power!

I used to be pretty decent at math. Something happened to that part of my brain with all this toxicity...math just totally freaks me out now. I break into a sweat if numbers are in front of me. Its useless...no matter how well I'm doing this is one thing that does not change. The numbers just kind of float around my head but thats about it....I cant make any sense of them!

I think because of all this... I'll forever be stupified by math. :rolleyes:

Oh well....I dont really care if I suck at math...math isnt gonna help me get better. :P

I REALLY want to get a massage, but just haven't felt like I should spend the money.

A massage sounds really good to me. I got a gift card for a massage...maybe I should actually use it. I had forgotten about it!

Is that thread still kicking? :o

Nope it died.....good thing because it was starting to make my head hurt! :P

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trickery and deceit! Ugh! more waiting.....

Ugh. How much longer April?? Seems like its been weeks!

We are back from our weekend at the beach. We had a good time playing in the ocean, although it was very cold!

Andrea, I'm glad everything went well. :)

Nope, you're not the only one, lol. I often wonder about why some topic bring out the police and some don't. You know...ALL of my doctors suggest taking digestive enzymes...conventional docs, alternative docs, integrative docs, voodoo docs...all of them want me to take them and I certainly would if I could find any that I don't react to! Digestive enzymes are not voodoo, they are pretty mainstream.

Its one of those things where people who have absoultely NO CLUE as to what digestive enzymes are....or have absolutely NO experience with them whatsoever...feel like they have to put their two cents in. :rolleyes:

You know...the whole..."My doctor has never recommended these therefore they must be garbage" (actually I believe the word was "junk").

Ummm...well I'm sorry that your doctor SUCKS.....some of the BETTER docs out there dont consider them to be junk. But yeah....just stick with your drugs and play nice ok. ;)

Donna...I guess if enzymes are voodoo....then vitamins must be too. Nevermind the fact that they are essential for good health and some of us may be deficient. But yeah....we're all very gullible for falling for these "scams". :lol:

Yeah, you have my spinning head to confirm THAT! :lol: I can't take in half of the scientificness...I bookmark and hope someday to be able to understand it.

Yeah....it just *seems* hard right now. All the diagrams and big words give us the impression that its difficult. Nothing is TOO difficult for the OMG'ers!! :D

(except maybe math) :ph34r:

In the next few months we're gonna have a much better understanding...we'll all be methylation pro's. ;)

Gosh I miss a lot when I go to sleep, lol. :lol:

yeah...and see what happens when I stay up way past my bedtime....I start going on tangents. :lol:

Andrea, next time make me go to bed!! :P

Everyone,

I'm not gonna be able to see the new voodoo lady till October. :(

She actually has a name....but she's Dr. P.....and I already have a Dr. P. I have two new Dr. P.'s!!! :huh:

Voodoo lady will have to do for now. :)

Anyways, she's booked up for all of August and Sept. I'm scheduled to see Dr. P in Sept. but he said if I cant get in with the voodoo lady I need to call him.

So he might not want to see me until I'm done with her. I have no appt. with her yet. The receptionist will call me when the dates for October are available. Thats SO far away!!!

We need to get this show on the road...so that I can get better and go to Germany. :)

I dont wanna wait till Oct. :(

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Too bad u missed what happened lol. Were any of the cops cute lmao

LOL....I see you and Julie have something in common. :lol:

It must be the uniform. :P

Be back later to catch up. :)

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You mentioned a battery of tests some days ago, and one was kryptopyrrulia, I just wanted to mention this ishe same as pyroluria. Just some different names to the same thing. Hemopyrulia (HPU in short) is another name. There are some forums in Germany and Switzerland and several websites and several test providers.

Interesting about over-and under-methylation, I had stumbled across websites and comments about that, but without any explanation, or how one does anything about this.

I had already read several ys ago about autism being a metal disorder so the trains of thought are not new, just now they join....

I had removed my amalgams teh 90's as I got so ill from them. mainly tired. Wonder how to figure out if I am over-or under-methylated. I tried b6 and zinc and it did give an itnitial boost energy, and I notice some more energy from B-12 but we do not have the methyl kind here, just the old kind together with b-6 from the pharmacy, on prescription. There are tablets or shots. The methyl B-12 has to be smuggled into this country. (I know of a healthfood shop that sells some under the table...) I tried some methylcobalamin and it gave me more energy for a couple of days but not more. wonder if i can just try the things one after another to check my pathways, this time knowing what I am doing......(i could try a clinic with some alternative docs trained in the U.S. but it takes months for an appointment, and I would like to have some good questions in the meantime)

Anyway, I did try to take my ldn every other day for a week or so a while ago, and my brain fog came back. I am back on ldn every day now. The worst symptom I have had all these years is brain fog. Gluten caused some more layers on top of hypo brain fog.....

I want to try the enzymes the autists take some day. We have some here.

nora

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Too bad u missed what happened lol. Were any of the cops cute lmao

LOL....I see you and Julie have something in common. :lol:

Nope, unfortunately my name is NOT Julie, lol....the cops around here are neither hunky, hot nor cute, lol.

Donna...I guess if enzymes are voodoo....then vitamins must be too. Nevermind the fact that they are essential for good health and some of us may be deficient. But yeah....we're all very gullible for falling for these "scams". :lol:

:lol: Yep...stupid scam vitamins, lol. Sorry you have to wait til October...maybe someone will cancel. :unsure:

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Sorry you have to wait til October...maybe someone will cancel. :unsure:

Ditto! That is a major bummer. :(

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I have to say that I'm constantly amazed by the folks on this board. :lol:

Well.....maybe flabbergasted is a better word...or even better...I'm freakin bumfuzzled right now! :blink:

Rachel, Rachel, Rachel, <shaking head sadly>

To really be part of this board you need to demand that your opinion is the only one that counts, contradict yourself in other threads, but ignore it, and make blanket statements that you insist must apply to everyone, all the time.

But seriously, if there were never dissent, people wouldn't be called upon to back up their statements. This is a good thing.

And I don't have time to read the methylation defects site, but your genes are continuously methylated and de-methylated throughout your life in response to life events. It's suspected to be tied to aging and is one of the reasons that identical twins become less identical as they get older. (Has nuthin to do with the defects aspect, just pointing out that it's a natural event.)

I like to read this thread just to see how people are healing (using whatever method that works for them).

And I find that burning chicken feathers in the house clears up all my skin rashes....or maybe that's 'clears out all my guests'...I'll have to check the spreadsheet ;)

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Okay everyone...appointment with the surgeon is on September 4. Now, I have to make a list of questions to ask...if I feel comfortable with him we'll probably schedule surgery.

And I find that burning chicken feathers in the house clears up all my skin rashes....or maybe that's 'clears out all my guests'...I'll have to check the spreadsheet ;)

It'd clear me out, but the spreadsheet might just keep me around! :lol:

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Andrea, I'm glad everything went well. :)

Me too.

Its one of those things where people who have absoultely NO CLUE as to what digestive enzymes are....or have absolutely NO experience with them whatsoever...feel like they have to put their two cents in. :rolleyes:

You know...the whole..."My doctor has never recommended these therefore they must be garbage" (actually I believe the word was "junk").

Ummm...well I'm sorry that your doctor SUCKS.....some of the BETTER docs out there dont consider them to be junk. But yeah....just stick with your drugs and play nice ok. ;)

Donna...I guess if enzymes are voodoo....then vitamins must be too. Nevermind the fact that they are essential for good health and some of us may be deficient. But yeah....we're all very gullible for falling for these "scams". :lol:

You know a while ago people thought the world was FLAT....and anyone who said differently was thought to be crazy :o ...and sometime ago, people thought that Celiac was the reason for all of their woes (me included)... and not so long ago witches were burned at the stake...

I think that enzymes are the reason why I didn't get much sicker, much sooner. I started taking them in 2000 after I went to the Mayo clinic for these "stomach attacks" they couldn't find anything. I was having horrible pain in my pancreas and would have spells where I couldn't eat for 48 hours..I would even throw up water!!! So, in horrible pain I did research about the pancreas and stomach and started taking enzymes with every meal and when I was really bad I took them in between meals. After about six months, I no longer had episodes. So to that naysayer, put that in your pipe and smoke it!!

In the next few months we're gonna have a much better understanding...we'll all be methylation pro's. ;)

Gosh, I hope so :D . I am getting desperate...can't fit into any of my clothes. I am getting my thyroid results back in a day or two, so I will see how bad it is without any T3. :(

Donna-

Thanks for the words of support the other day

Nancy

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Hey everyone,

My friend Julie called, said there is a meeting in Visalia at some Mexican Restaurant for the new Waiora compass. I know I'm going to crave those tortilla chip, but I won't have any. :( I will let you know how it works. You are suppose to put your hand on it and it suppose to tell you how elevated your metal, toxins and minerals are. I hope I don't break it. :P

We shall see. :lol:

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Rachel.

That is why i dont stray from this thread much anymore. I cant handle how some people are ummmmm soo ummmmmmmm lol.

Paula, I couldnt have said it better myself. :lol::lol:

It sometimes feels like a warzone out there....I think we need special armour for the occassions when we want to venture out. :unsure:

I cant beleive i have been paying an forutne for redbridge when i could be drinking bud light.

:lol::lol:

Yeah....and heck why not stop there....think of all the money that could be saved by switching back to regular bread!! :o

Wonderbread here I come!!! :lol:

Just kidding....I think it would have to be some type of fermented gluten bread...because maybe fermented gluten isnt bad?? :huh: I didnt read the whole beer thread so I might be a little confused on that part. :P

Seriously though....I think you should stick to the Redbridge....even if it does cost $20 a bottle....at least you'll be safe. :D

I have bad news to report tho. We had an death in the family yesterday. My poor little confused princess hamster passed away. I was so sad that she passed away. I was up all night thinking about her and her cute little face. Now the dora hamster is all lonely

Awww....poor little princess. I'm sorry Paula. :(

No need to apologize Rachel - I love your posts! I have learned so much from you, and some of the regulars on this thread. I'm sorry if I was out of place. I don't want to offend anyone, but if we can't talk openly about our experiences and question or test limits, then this is not a forum it is a police state!

People who shut down open discussions deprive the celiac disease/GI community an important source of information - ourselves! It is ludicrous to think that empirical, exploratory or non-mainstream topics are off limits and that people cannot discern for themselves what is established and what is still experimental. It is best to have all information available to decide what is best from an individual standpoint, rather than an edited or censored version of "experience".

I dont mind a good debate....people disagree...and thats not a bad thing. If everyone were in agreement 100% of the time...what would we talk about??

However...as you mentioned...attempting to shut down discussions (simply because you do not agree) restricts info. that may have been beneficial to the next person. I personally dont feel that I have the right to deprive others of information which THEY might find useful....which is why I refrain from posting in topics where I have nothing useful to offer (either positive or negative).

Unfortunately, not everyone sees it this way...

I'm sorry that people jumped all over you for discussing alternative measures and the enzyme pill.

I saw that other members were being attacked for sharing their experiences with enzymes. So yeah...I guess I kind of threw myself into the fire on that one. :ph34r: But hey....I happen to believe that enzymes are beneficial. Thing is....none of the people who were bashing the enzyme users...had any experience or knowledge on the topic whatsoever. In my opinion if all you have to offer is insults....just skip the topic and move on.

Unfortunately, not everyone does this.....

No worries Rachel. I'm glad we're good. :)

No worries. :)

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I saw that other members were being attacked for sharing their experiences with enzymes. So yeah...I guess I kind of threw myself into the fire on that one. :ph34r: But hey....I happen to believe that enzymes are beneficial. Thing is....none of the people who were bashing the enzyme users...had any experience or knowledge on the topic whatsoever. In my opinion if all you have to offer is insults....just skip the topic and move on.

Unfortunately, not everyone does this.....

No worries. :)

That's pretty much why I joined that thread, too. I didn't like the enzyme users being bashed for sharing their experiences. I don't venture out of the OMG thread too often, but when I saw "glutenease" in the thread name....and that is one that I use....i thought I would venture over and see what was up.

I couldn't believe my eyes!

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For those of you taking vit D, how much are you taking?

I started a new liquid Vit d. ONe drop = 400 iu. I work indoors 5 days a week, so I am pretty sure I am deficient.

I haven't been tested yet.

For everyone with children who might be shopping for car seats, check out this site

http://www.healthycar.org/home.php

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Unfortunately for me, these sulfation/methylation things don't sink in for me. I don't think I am a stupid person, but no matter how many times I read this stuff, I do not understand it.

Nancy, stick around....we can figure this stuff out. :)

But, this sulfation/methylation thing, I can't wrap my brain around...so how can I even begin to get the help I need.

My naturopath ran the Doctor's Data amino test (per my request) about 7 months ago and got NO info out of it!!! I am the one who noticed the high cysteine levels. I have liked this doctor, but she is clueless about these blocked pathways...which means finding ANOTHER doctor, going through all of this AGAIN.

It doesnt matter how much you like the Dr.....sometimes you just have to move on if they arent knowledgeable in the areas that you need the most help. In the past couple years I've seen 6 different people...and now I've just added two more to the list. They have all been AWESOME...but when I need something more...I have to move on. I still have all of these Dr.'s and I can see whoever I need to see for whatever issue I'm dealing with...and its great that I have choices.

Right now I need someone to solve these pathway problems and I didnt feel that any of the Dr.'s I've seen have enough knowledge to really solve it...so I had no choice but to add another Dr. into the mix.

I dont see this as starting over...not at all. I see it as moving forward. You *need* a Dr. who understands this stuff. You have some of the labwork....you just need someone who knows what to do with it. If you go into it knowing what you want out of the doctor.....most likely you wont be disappointed.

We tend to get disappointed when we're in the dark and not knowing where to go...so we just go to whomever is available and then pray that they'll have a clue. Thats how it went for me the first few years.....and it was a miserable experience...a string of clueless doctors and each visit ending in disappointment.

You have some big clues as far as where you're needing help....now look for the doctor who knows how to treat you. You take everything you've done up to now with you....and you're moving forward. You're not going through the process all over again...you're continuing with the process...but making a big step forward. Thats how I see it. :)

Rachel- what you posted about the hormones being broken down by the sulfation...makes sense to me. I ended up in the ER many times about 8 years ago when my PCOS doctor put me on estrogen (unopposed by the way). And now my naturopath tried my on DHEA and I am not doing well.

How do you do with soy or flax?? Those are high in natural estrogen. For me they are very bad....especially soy. Its the PST enzyme that processes the phenols, amines, hormones neurotransmitters, etc. You need an adequate supply of sulfate in order for PST to function normally.

If theres a block in the pathway this can cause a shortage of sulfate. Without sulfate all of these things can build up. If PST is weak...anything that overloads it will cause a worsening of symptoms. So taking estrogen can definately do that IF the PST enzyme is weak.

Heres some reasons to avoid estrogen:

Estrogen. This causes the retention of copper and the loss of zinc, folic acid, B12 and B6. Estrogen also suppresses thyroid. It suppresses the detoxification functions of the body.

and heres another scenario....

An often ignored source of estrogen is from intestinal yeast. Yeast make estradiol, the strongest of the human estrogens. However, yeast isn't the only intestinal problem that contributes to excess estrogen. Dysbiosis interferes with the body's ability to eliminate estrogen.

Bacterial overgrowth in the small intestinal will increase the recycling of estrogen. The liver dumps estrogen into the intestines in a conjugated form, which does not get absorbed from the intestines. Bacteria deconjugate the estrogen, making it available for reabsorption. Thus, when there is a bacterial overgrowth in the small intestine, the liver will have to dump the same estrogen into the intestines over and over again.

Another way that dysbiosis interferes with the elimination of estrogen is by reducing the body's supply of sulfates. The inflammation caused by dysbiosis leads to increased loss of sulfates. This interferes with the body's ability to eliminate estrogens in their sulfate form.

There is yet another way that dysbiosis interferes with the elimination of estrogen. Dysbiosis can cause hypothyroidism. Hypothyroidism reduces the liver's ability to get rid of estrogen.

If you have problems with the foods containing highy amounts of phenol...then it could be a problem with PST. If you can tolerate those foods then it probably isnt your problem.

Also- there is a thing called being under and over methylated...and if you are over methylated, like me, you need to stay away from methionine and probobaly all of the other cysteine things...and we do well on folic acid, I am supposed to do well on B12, but I don't. We should avoid TMG and DMG. WE have low basophils. And supposedly have low histamine levels. We supposedly have copper overload and folic and B12 deficiencly. These types have food and chemical sensitivies.

According to the info on under and over methylators...I would be considered over methylated. I'm not going to make an assumption about this though. Also, I would have to assume that any abnormalities in the cycle can cause a person to be one way or the other. In my opinion its kind of a description of the problem....but its nothing that is absolute.

This is from a page which discusses over/under methylation..

Let's say Pfeiffer is exactly correct and under-methylators are about 45% of the "autism" population. These are the values for the precursors for methylation:

- calcium 39% saw improvement

- DMG 43% saw improvement

- Folic acid 44% saw improvement

- B6/mag (both of these are precursors) 46% saw improvement

- Zinc 43% saw improvement

So if you look at any of the precursors, really, most are around that 45% mark of under-methylators (calcium was a little low, but it is a supporting element). So we have a mark of consistency here. SAMe, methionine, and B12 were not choices.

What this does NOT point out is which came first. Was zinc low for some reason not related to methylation and because it was low, methylation dropped? or are you a genetically low-methylator to begin with and do not utilize the nutrients at hand well? Or was folic acid the bottle-neck? or magnesium deficiency? Or an injured gut which cannot adequately absorb any of the nutrients? or....

This is how I see it, just as a general guideline that may be helpful, not a cast in stone type of thing.

I have to agree with this because just knowing if you're an over or under methylator doesnt necessarily tell you what needs to be done to correct the problem.

Its kind of like IBS...so you have the label...but what is causing it?

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