Gluten

[Guest guest]

Wow. Sounds like you went thru the whole circus...

That must have been a terrible ordeal. What would you tell someone

today...knowing what you've learned- after going thru all of that.

Seems to me, that the process would be: first the primary care doctor, then the

recommendation/prescription for the specialist, then the wait for the

appointment for the specialist, then the scheduling of new testing, another

appt, then testing, then the wait for the results, then the consultation on the

results, the recommendation for treatment, then another consultation for

treatment. Knowing what you know today...would you short cut any of that?

Because it seems to me, from point A, suffering, to point E? F, G, more

suffering....by the time any healing gets done...there's been a window of on

going damage.

Lizzie

From: evie15422@...

Date: Sat, 18 Jun 2011 18:55:49 -0700

Subject: RE: Gluten

I should have stated in the first paragraph of this email that a *negative*

blood or gene test doesn't necessarily mean anything in individual cases. I

neglected to include the word negative. A positive test would mean something!

Sorry, not all brain cells are doing their jobs today. lol

Diane

From: thode <lizt777@...>

Subject: Gluten

esens

Date: Wednesday, June 1, 2011, 7:20 PM

On the subject of gluten. Gluten products ie: wheat, peanuts, corn.....these are

all crops that tend to be " moldy " . Add into the fact that commercial bread

making UPS the amt of gluten to make more bread. I think of Celiac disease as AN

INTOLERANCE TO MOLD. Google Dr. Dietrich Klinghardt and READ what he says about

when you put a micro toxin (be it viral, bacterial, or MOLD) into the

field/exposure of EMF's, the micro toxin multiplies by 600%. Celiac is supposed

to be " genetic " , according to the mainstream medical industrial complex. Really?

ARe we ALL related then? Because I know a ton of people who can't eat wheat

products! And none of them have relatives with Celiac. Some might say, well,

maybe the relatives just didn't know, weren't diagnosed...I've heard the same

argument used to explain Autism. The only reason the numbers are soo high is due

to better diagnostics. Some people actually believe the myth that Autism has

always been around.

Hmmm.......Kind of makes me wonder what " they're smoking " .

This is just one example of many. I had a damp moldy basement. When I got rid of

wifi, wireless, ect....within days, my basement didn't smell tht nasty smell.

I've had 3 electricians from 3 diff't companies tell me my basement was the

cleanest smelling basement they'd ever been in. They said for them, it was

normal business as usual to have to work in moldy smelling basements. Out here,

most are michigan basements. That means only part of it is dug out. There are

rooms- spaces with dirt.

I had a friend who lives on a farm, has 3 kids. Being stung by a bee is a normal

occurrance. EXcept the one time that the little girls arm swelled all the way UP

to her shoulder. Scared the pee out of her mom. The child hadn't eaten anything

different. Nothing was changed in her diet, no new soap products were used. The

ONLY THING THAT WAS DIFFERENT was that they had company over, who were using

their

WIRELESS LAP THAT WEEKEND!! Normally, there was no wireless in their

environment. *They were under the belief that the little stick on product their

guests had put on their laptop to protect from radiation actually worked. As far

as MOLD goes? I don't think the human body was designed to tolerate MOLD that

has multiplied by 600%.

Something to think about.

Lizzie

[Guest guest]

Lizzie,

 

You have no idea!    I had celiac disease from early childhood and was not

dxed till I was 49!  I was nearly totally bed-bound for 13 years (usually only

well enough to go to the bathroom and feed myself pre-prepared food) and various

degrees of dysfunctional my entire life.  [However all that I wrote was not

personal experience; I learned of some of the ways docs miss the dx of cd from

other poor schmucks like me.    ]

 

If I had to do it over again and knew what I know now, I would say I'd pay much

less attention to what traditional medicine and other people (and medical

tests) had to say and start doing my own thinking and acting much earlier. 

  Yes, I had great damage in the meantime, which was why I had/ have so many

dxes I need a notebook to keep track of them all.  But that said, I have

overcome or at least have good control of almost all of my dxes today (MCS and

bronchial asthma are the hardest to control).  I live a pretty normal life,

and actually more active life, than most people my age.   

 

People who know me locally think I am one of the most laid back people they

ever met.  lol  Nothing much ruffles my feathers.  But I had years of

practice.  lololol  Once a veteran of war, you are not so easily daunted. 

 

 

Diane

From: thode <lizt777@...>

Subject: Gluten

esens

Date: Wednesday, June 1, 2011, 7:20 PM

On the subject of gluten. Gluten products ie: wheat, peanuts, corn.....these are

all crops that tend to be " moldy " . Add into the fact that commercial bread

making UPS the amt of gluten to make more bread. I think of Celiac disease as AN

INTOLERANCE TO MOLD. Google Dr. Dietrich Klinghardt and READ what he says about

when you put a micro toxin (be it viral, bacterial, or MOLD) into the

field/exposure of EMF's, the micro toxin multiplies by 600%. Celiac is supposed

to be " genetic " , according to the mainstream medical industrial complex. Really?

ARe we ALL related then? Because I know a ton of people who can't eat wheat

products! And none of them have relatives with Celiac. Some might say, well,

maybe the relatives just didn't know, weren't diagnosed...I've heard the same

argument used to explain Autism. The only reason the numbers are soo high is due

to better diagnostics. Some people actually believe the myth that Autism has

always been around.

Hmmm.......Kind of makes me wonder what " they're smoking " .

This is just one example of many. I had a damp moldy basement. When I got rid of

wifi, wireless, ect....within days, my basement didn't smell tht nasty smell.

I've had 3 electricians from 3 diff't companies tell me my basement was the

cleanest smelling basement they'd ever been in. They said for them, it was

normal business as usual to have to work in moldy smelling basements. Out here,

most are michigan basements. That means only part of it is dug out. There are

rooms- spaces with dirt.

I had a friend who lives on a farm, has 3 kids. Being stung by a bee is a normal

occurrance. EXcept the one time that the little girls arm swelled all the way UP

to her shoulder. Scared the pee out of her mom. The child hadn't eaten anything

different. Nothing was changed in her diet, no new soap products were used. The

ONLY THING THAT WAS DIFFERENT was that they had company over, who were using

their

WIRELESS LAP THAT WEEKEND!! Normally, there was no wireless in their

environment. *They were under the belief that the little stick on product their

guests had put on their laptop to protect from radiation actually worked. As far

as MOLD goes? I don't think the human body was designed to tolerate MOLD that

has multiplied by 600%.

Something to think about.

Lizzie

[Guest guest]

I'm glad prolo worked for her. I had it for a year and saw no improvement. My

pain was not joint related though. I started taking savella then which helped

with the pain but not the fatigue at all. Did your wife have fatigue too? Has

that improved?

On May 18, 2012, at 4:35 PM, alan parker <pilotdad28645@...> wrote:

> My wife was diagnosed fibromyalgia 5 years ago. She went to doctors with her

health deteriorating, much weight gain, gall bladder removal and knee problems

that doctors recommended knee replacement saying all was fibro related. Being 42

I thought there had to be a alternative. I researched other alternatives and

decided to go with a new alternative called prolotherapy. This dr. told her he

didn't think she had fibro and tested her for gluten intolerance, hormone in

balance and thyroid. She test positive for all these even though her other

doctors had tested for these they showed negative. Her doctor recommended the

hcg diet in which he is on, go on a gluten free diet, take thyroid medication,

hormone medication and prolotherapy injections in her knees which is extremely

painful. Started july 2011 and lost 68 pounds, no more fibro type pain, sleeping

really great and knees are not better but no pain as long as she don't over do

it. She still undergoing

> prolo. But feels great.

>

> Just letting everyone know just in case of a misdiagnosis and hope it helps

someone.

> Alan

>

>

[Guest guest]

I also lost 64 lbs on the hcg diet and felt great while on the hcg, but

after the diet ended, the pain ALL came back and it's really hard not to let

the weight come back as well. I always felt there was really something to

the fact that all the fibro patients felt so well while taking even the

homeopathic hcg. I wish the results lasted. But I wonder what the

connection is.

Marcia

Re: gluten

Good for you for looking further!!! I too lost 60 lbs on the HCG diet.

Dr. Teitlebaum has some posts referring the HCG helping with fibro pain.

Have you looked into LDN?? It is a big help for Fibro and other health

issues.

God Bless,

Sara

>

> My wife was diagnosed fibromyalgia 5 years ago. She went to doctors with

> her health deteriorating, much weight gain, gall bladder removal and knee

> problems that doctors recommended knee replacement saying all was fibro

> related. Being 42 I thought there had to be a alternative. I researched

> other alternatives and decided to go with a new alternative called

> prolotherapy. This dr. told her he didn't think she had fibro and tested

> her for gluten intolerance, hormone in balance and thyroid. She test

> positive for all these even though her other doctors had tested for these

> they showed negative. Her doctor recommended the hcg diet in which he is

> on, go on a gluten free diet, take thyroid medication, hormone medication

> and prolotherapy injections in her knees which is extremely painful.

> Started july 2011 and lost 68 pounds, no more fibro type pain, sleeping

> really great and knees are not better but no pain as long as she don't

> over do it. She still undergoing

> prolo. But feels great.

>

> Just letting everyone know just in case of a misdiagnosis and hope it

> helps someone.

> Alan

>

>

>

[Guest guest]

Why is the HCG diet banned in USA if it works so well for fibro pain ?

Deepak

On Sat, May 19, 2012 at 10:53 PM, MG <happytrails@...> wrote:

> **

>

>

> I also lost 64 lbs on the hcg diet and felt great while on the hcg, but

> after the diet ended, the pain ALL came back and it's really hard not to

> let

> the weight come back as well. I always felt there was really something to

> the fact that all the fibro patients felt so well while taking even the

> homeopathic hcg. I wish the results lasted. But I wonder what the

> connection is.

>

> Marcia

>

>

> Re: gluten

>

> Good for you for looking further!!! I too lost 60 lbs on the HCG diet.

> Dr. Teitlebaum has some posts referring the HCG helping with fibro pain.

> Have you looked into LDN?? It is a big help for Fibro and other health

> issues.

>

> God Bless,

> Sara

>

>

> >

> > My wife was diagnosed fibromyalgia 5 years ago. She went to doctors with

> > her health deteriorating, much weight gain, gall bladder removal and

> knee

> > problems that doctors recommended knee replacement saying all was fibro

> > related. Being 42 I thought there had to be a alternative. I researched

> > other alternatives and decided to go with a new alternative called

> > prolotherapy. This dr. told her he didn't think she had fibro and tested

> > her for gluten intolerance, hormone in balance and thyroid. She test

> > positive for all these even though her other doctors had tested for

> these

> > they showed negative. Her doctor recommended the hcg diet in which he is

> > on, go on a gluten free diet, take thyroid medication, hormone

> medication

> > and prolotherapy injections in her knees which is extremely painful.

> > Started july 2011 and lost 68 pounds, no more fibro type pain, sleeping

> > really great and knees are not better but no pain as long as she don't

> > over do it. She still undergoing

> > prolo. But feels great.

> >

> > Just letting everyone know just in case of a misdiagnosis and hope it

> > helps someone.

> > Alan

> >

> >

> >

[Guest guest]

{Moderator: Please trim posts.}

It's not really 'banned'. It's always been a prescription drug (injectible

version) so technically need to get it from a health care provider. But most

people buy it online and have it imported which is really illegal. They got

after the homeopathic companies for making 'unproven claims', so some of

those versions no longer have the actual hcg in them, and won't work.

the problem is you have to be on a 500 cal a day diet with it, if you ate

normally you'd actually gain faster than you would if you were not taking

it.

marcia

Re: Re: gluten

Why is the HCG diet banned in USA if it works so well for fibro pain ?

Deepak

[Guest guest]

Where did this start " HCG works well for fibro pain " ? Please provide links from

PubMed or a reliable source (not a website selling it).

HCG has nothing to do with relieving pain of any kind, period. HCG is the

chemical in a pregnant woman's urine that changes the metabolism that protects

the fetus from feast or famine effects.

I lost 45 lbs on the diet and some days it was difficult to eat more 300

calories and some days it was hard to stay at 500 calories. Basically, you are

living off your own fat and the fresh food is providing your daily minerals.

I also found, by accident, that my body LOVES the food that is approved on the

diet. I also realized how badly my body feels with carbs and fat (I knew this

already just not the extent).

So, while I don't eat 500 calories, I still eat the foods on the approved list.

I can digest them so much better.

Perhaps people mean by staying off carbs/gluten, they have less muscle pain?

Please let's clarify this or people are going to start ordering HCG to handle

their pain. You can stay off carbs/gluten and feel better without taking HCG.

Marti

> > >

> > > My wife was diagnosed fibromyalgia 5 years ago. She went to doctors with

> > > her health deteriorating, much weight gain, gall bladder removal and

> > knee

> > > problems that doctors recommended knee replacement saying all was fibro

> > > related. Being 42 I thought there had to be a alternative. I researched

> > > other alternatives and decided to go with a new alternative called

> > > prolotherapy. This dr. told her he didn't think she had fibro and tested

> > > her for gluten intolerance, hormone in balance and thyroid. She test

> > > positive for all these even though her other doctors had tested for

> > these

> > > they showed negative. Her doctor recommended the hcg diet in which he is

> > > on, go on a gluten free diet, take thyroid medication, hormone

> > medication

> > > and prolotherapy injections in her knees which is extremely painful.

> > > Started july 2011 and lost 68 pounds, no more fibro type pain, sleeping

> > > really great and knees are not better but no pain as long as she don't

> > > over do it. She still undergoing

> > > prolo. But feels great.

> > >

> > > Just letting everyone know just in case of a misdiagnosis and hope it

> > > helps someone.

> > > Alan

> > >

> > >

> > >

[Guest guest]

I felt a lot less pain on the hcg diet of 500 cals a day, but part of that

was two bread sticks a day, so I wasn't eating 'gluten free' even while on

that restricted diet so I really think it was the hcg that helped in my

case, it made a HUGE difference in the horrible stiffness, not to mention

the fact that no other diet had ever budged my CFS (of 33 yrs) weight gain.

I agree with Marti, you'd have to read Dr Simeon's book Pounds and Inches to

learn how the diet works and why it works, and hear people's own experiences

with it before you'd have a valid point to judge.

Marcia

Re: Re: gluten

I have been gluten free for about 16 years now and I have a lot less pain

than I used to have. I hadnt made the connection that the gluten free diet

might be contributing to the improvement in my pain since there are other

factors too. I had prolotherapy on my lower back that also helped with that.

Beverly H

Where did this start " HCG works well for fibro pain " ? Please provide

links from PubMed or a reliable source (not a website selling it).

HCG has nothing to do with relieving pain of any kind, period. HCG is the

chemical in a pregnant woman's urine that changes the metabolism that

protects the fetus from feast or famine effects.

I lost 45 lbs on the diet and some days it was difficult to eat more 300

calories and some days it was hard to stay at 500 calories. Basically, you

are living off your own fat and the fresh food is providing your daily

minerals.

I also found, by accident, that my body LOVES the food that is approved on

the diet. I also realized how badly my body feels with carbs and fat (I knew

this already just not the extent).

So, while I don't eat 500 calories, I still eat the foods on the approved

list. I can digest them so much better.

Perhaps people mean by staying off carbs/gluten, they have less muscle

pain? Please let's clarify this or people are going to start ordering HCG to

handle their pain. You can stay off carbs/gluten and feel better without

taking HCG.

Marti

[Guest guest]

On the hcg diet you eat two servings a day of either breadsticks or Melba

toast. Is that a gluten free diet?

Marcia

Re: gluten

Who cares what the FDA says? Are we sheep that we need the FDA to tell us

500 calories is not safe!!!???!!! If you are not going to follow the diet to

the letter then you are putting your health at risk.

Doing the entire HCG diet is safe if you do it right. Pregnant women are

doing it all the time, all over the world since the beginning of time.

Doing the 500 calories without HCG is risky and I don't think anyone is

saying that. Please don't criticize what you don't understand.

http://en.wikipedia.org/wiki/Albert_T._W._Simeons

the original manuscript (ignore the text in red at the top)

http://www.slimdownhcg.com/resources/dr-simeons-manuscript.pdf

If you have not read Dr. Simeons ENTIRE manuscript, then you have no

business doing the diet or commenting about it.

Marti

>

> FDA says 500 calorie diet not healthy.

>

>

>

[Guest guest]

Well it would certainly be nice if people didn't have to be 'attacked' for

sharing their own positive experience with things, then they wonder why

nobody answers when questions are asked. I'd have loved for somebody to

share a story with me about what helped their fibro, even temporarily or

what helped them lose 25 years of constant weight gain. Forget that, I'm

going back to lurkdom thank you.

marcia

Re: gluten

So sorry! You're right, I didn't mean to come down hard on you. I didn't

catch why you stated that. I just get frustrated when people start bashing

things they don't know about. And I am angry with the government and doctors

right now so I'm a little touchy. And it is frustrating when people start

making claims without backing them up.

Someone sent a link that Teitelbaum posted something about pain and HCG but

I have a hard time believing that. The link was broken so hopefully they

will repost.

By the way, I meant to thank you for getting on the forum with good news.

that is always good to hear and very few people do that. I am very glad your

wife is better.

After I hit send, I thought perhaps I was too harsh!

Thanks for clarifying.

Marti

> >

> > FDA says 500 calorie diet not healthy.

> >

> >

> >

>

>

>

>

>

[Guest guest]

Hi Marcia,

No, that is not gluten free. GF means no wheat, rye or barley. It is basically

in everything, unfortunately. Anything with caramel coloring, maltodextrin. It

is hidden in processed foods. It has to say gluten free on the box or can. And

it's better if it is processed in a gluten free dedicated facility. Some brands

are better than others - Bob's Red Mill and Glutino are two.

But the HCG diet uses such a low carb component that I think that might be why

people are feeling better. For some reason, ME/CFIDS'ers cannot process carbs or

fat very well. Which makes the HCG a great fit (at higher caloric levels when

not on Stage 1).

Since I am GF, I didn't eat breadsticks or Melba toast. I used GF bread that I

make or corn tortillas (the no fat kind). I also switched the meat around to

include grilled beef liver which my body loves and processes well. So I did the

chicken and the grilled beef liver.

HTH,

Marti

> >

> > FDA says 500 calorie diet not healthy.

> >

> >

> >

>

>

>

>

>

[Guest guest]

Bev,

You have other grains but not wheat ?

Deepak

On Mon, May 21, 2012 at 12:13 AM, Beverly <bevbh@...>wrote:

> **

>

>

> I have been gluten free for about 16 years now and I have a lot less pain

> than I used to have. I hadnt made the connection that the gluten free diet

> might be contributing to the improvement in my pain since there are other

> factors too. I had prolotherapy on my lower back that also helped with

> that.

> Beverly H

>-

[Guest guest]

I understand! You are exactly right with the hcg diet. My wife has gone off hcg

for a month and she didn't gain any of her weight back. She stays off the gluten

though. But when she does mistakenly eat gluten, makes her sick. I'm sure you

know this.

 I'm angry with the government also, that's why the letter to the FDA. I feel

it's all about greed. And i'm a product of Dr. greed myself. I can barely hear

out of one ear because a dr. wanted to have a income from keeping my ear bad

when i was a little kid. My adult ear Dr. confirmed this. If you have Netflix

there is a movie on there called Burenski, maybe not spelled right. But this Dr.

successfully had a treatment for cancer and the FDA tried to have him

imprisoned. Watch it and it will make you even more angry.

 But thanks to people like you and joanna sharing what we have learned maybe we

can make a difference in someones life.

________________________________

From: marti_zavala <marti_zavala@...>

Sent: Sunday, May 20, 2012 5:23 PM

Subject: Re: gluten

 

So sorry! You're right, I didn't mean to come down hard on you.

[Guest guest]

Thanks for being so understanding. I didn't notice the sender - just saw the

line and I saw red!

I have recently been evaluated by a brilliant diagnostician and he found that I

have EDS - Ehlers Danos Syndrome. He wants me to be checked for Chiari

Malformation (which I have known about for 13 years as being part of the

differential for ME/CFIDS but which I could never have done as no one would do a

brain MRI).

I have wasted money on copays to find a neurologist or neurosurgeon to evaluate

my MRI's. Just getting them to run the right kind of MRI is like pulling teeth.

In line with your original post, everyone should evaluate themselves for EDS as

it is confused with ME/CFIDS and/or Fibromyalgia.

http://www.ehlersdanlosnetwork.org/hypermobility.html

I can actually handle a little gluten so I would say I am gluten intolerant

rather than celiac. I can have a little one day but not two days in a row. I

notice a bigger difference in the amount of carbs I have (gluten or otherwise).

My body just does not know what to do with carbs or fat. I take prescription

enzymes at every meal, acid before the meal and baking soda after. I found out

that I have gastric emptying delay as part of my EDS - it takes 30 minutes to

digest 16% of what I have eaten.

So, I eat something with carbs right before I run errands and that keeps me from

cheating while out and about since I feel full. I really did well on the HCG

diet due to the very low fat component. Funny thing is, the diet for people

with gastric emptying delay is VERY similar to the HCG diet. The same ratios of

fat/carbs/protein.

I find that I gain weight when I add fat and sugar - for example, the icing on a

cupcake or a meat that is not the chicken or beef liver. When I start to gain,

I just do a day or two of the HCG foods but at a higher caloric level and it

comes back down. I have never been able to do the 6 apple day or the apple/steak

day. I need to eat a little more often.

As far as the pain, I am going to research this as see if there is any

scientific fact. Dr. Teitelbaum has a blurb but the link to more info is broken

or the info has been removed. Does anyone have access to this site or know which

article he is referencing?

http://www.endfatigue.com/newsletters-2/nl_2011-01-11.html

Marti

>

> I understand! You are exactly right with the hcg diet. My wife has gone off

hcg for a month and she didn't gain any of her weight back. She stays off the

gluten though. But when she does mistakenly eat gluten, makes her sick. I'm sure

you know this.

>  I'm angry with the government also, that's why the letter to the FDA. I feel

it's all about greed. And i'm a product of Dr. greed myself. I can barely hear

out of one ear because a dr. wanted to have a income from keeping my ear bad

when i was a little kid. My adult ear Dr. confirmed this. If you have Netflix

there is a movie on there called Burenski, maybe not spelled right. But this Dr.

successfully had a treatment for cancer and the FDA tried to have him

imprisoned. Watch it and it will make you even more angry.

>  But thanks to people like you and joanna sharing what we have learned maybe

we can make a difference in someones life.

>

>

>

> ________________________________

> From: marti_zavala <marti_zavala@...>

>

> Sent: Sunday, May 20, 2012 5:23 PM

> Subject: Re: gluten

>

>

>  

> So sorry! You're right, I didn't mean to come down hard on you.

>

[Guest guest]

What kind of doctor diagnoses EDS ?

On Mon, May 21, 2012 at 8:49 AM, marti_zavala <marti_zavala@...>wrote:

> **

>

>

> Thanks for being so understanding. I didn't notice the sender - just saw

> the line and I saw red!

>

> I have recently been evaluated by a brilliant diagnostician and he found

> that I have EDS - Ehlers Danos Syndrome.

[Guest guest]

Hi Deepak,

Any doctor that is willing to learn. EDS is not new but it was considered

benign until a few years ago (10 years). Much is still not know but 5 or 6 types

have been identified. Only two types offer testing (genetic), the others are

diagnosed based on physical evaluation.

Typically, a neurologist or a rheumatologist would be a good doc to start with

but if you have a good PCP, that is fine too.

If, based on the major and minor criteria, it looks like a fit, then you can be

sent to a geneticist for confirmation (genetic tests for the 2 types if symptoms

warrant). There is no test for the hypermobility type ( previously known as

Type III).

It is important to know as there are some things that you can do to feel better

and some things to be aware of in terms of medical care.

One way to find a doc is to call the nearest teaching hospital and locate the

EDS geneticist. There is usually a long waiting time but ask the nurse for a

name of a neurologist or rheumy that that doctor works with who will pre-screen

you.

Marti

>

> > **

> >

> >

> > Thanks for being so understanding. I didn't notice the sender - just saw

> > the line and I saw red!

> >

> > I have recently been evaluated by a brilliant diagnostician and he found

> > that I have EDS - Ehlers Danos Syndrome.

>