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chgomom

All Of This Could Be Celiac?

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OK...positive blood work, high related inflammation levels (c3c, c4c, and crp)

I have:

Joint pain

gas pains (some times even on an empty stomach)

the big D from time to time

constipation from time to time

weightloss (I was 318 5 mos ago, I am now 253, which isn't bad because of the weight, but to me its bad because of how I am lsoing it)

Salt bothers me (not already in food, but like if its sprinkled on top...WHY????)

I have to have meats with no antibiotics, or preservatives (very expesnive, but I get sick otherwise)

I get pains all over my body, even muscle twitches

Dizziness

Nausea

I run fevers from time to time

I get dehydrated, really easily, I mean really easily

I have DH on my face, although the rheumatologist wants be to get biopsied on the skin in a couple of plcaes because he said it could also be discoid lupus???

Most of the time I am falling on my face with exhaustion,

Then there are times that I can't get to sleep at all (what that heck is that?)

So...to make a long story short....my gp was a really winner when I went the other day. he said and I quote: "You went to a rheumatologist (my thought while he was talking: yeah winner because you weren't doing anything, he took the time and found something) I think you have a whole lotta nothing going on"

So I called the medical group, the head doc said it was insensitive and he concurs with the ER doc from last week. I owe it to myself to get the discoid checked out by a derm, but...and he said a big but....Celiac can really tear your system apart, and with as scary as it may be,,,all the thinsg you just told me, Sprue can cause?

Really, I was gluten free since June doing fairly well. Then my new GI doc had me start a challange, which is what landed me in the ER, 2 weeks ago. and I am still sick from it??

I hate to whine the same story thats been lamented about on here....but is Sprue really that wicked that it can do all that???? Wow.


Quod me nutrit, me destruit

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This insidious disease can do all that and much more....... :(<_<

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I had many of those symptoms, especially the dehydration, which even caused trips to the ER several times over the past 20 years.

Most importantly, you need to be sure you're 100% gluten-free.

After that, you sound very much like me. Dead tired, but when I go to bed, I can't fall asleep, included! Being gluten-free for me was not quite enough to turn my health around. I was just sick for too long and it wore my whole system down. I think it does all go back to my problem with gluten, but in the end it wore me out. I just read a book called Tired of Being Tired by Jesse Lynn Hanely MD. I highly recommend it to you.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I know the feeling of absolute total exhaustion very well. I still get it. It particularly scared me one day when I was taking the kids to visit my mom in the city and I literally felt like I was going to fall asleep at the wheel on the highway......

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I know the feeling of absolute total exhaustion very well. I still get it. It particularly scared me one day when I was taking the kids to visit my mom in the city and I literally felt like I was going to fall asleep at the wheel on the highway......

Karen

I thought that was normal until recently ...


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I had many of those symptoms, especially the dehydration, which even caused trips to the ER several times over the past 20 years.

Most importantly, you need to be sure you're 100% gluten-free.

After that, you sound very much like me. Dead tired, but when I go to bed, I can't fall asleep, included! Being gluten-free for me was not quite enough to turn my health around. I was just sick for too long and it wore my whole system down. I think it does all go back to my problem with gluten, but in the end it wore me out. I just read a book called Tired of Being Tired by Jesse Lynn Hanely MD. I highly recommend it to you.

i had a couple of trips to the er too, also dehydration which was causeing severe C.


married with 3 boys, maclain, dylan and finlay. symptoms for more than 10 years but only diagnosed may 06. lactose and casien intolerant may 06.

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I hate to whine the same story thats been lamented about on here....but is Sprue really that wicked that it can do all that???? Wow.

Oh yeah,it's a really insidious disease alright.

Nasty,nasty disease which creeps up,and has a myriad of symptoms.

Regarding the fatigue,before dx ,my hubby would be in bed 20 out of 24 hrs a day.

He was so weak I'd have to support his head to take a drink :o


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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Alfred,

Please stop spamming our board with ridiculous claims.....

Thank you.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Beleive me I saw it with my own eyes.

go to www.powerofraffael.com

All the same ,I think I'll pass.


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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CELIAC DISEASE

COMPLETLEY CURED

IN SYDNEY

Raffael says as he closed his eyes he could see the clouded areas of Miss Mona’s Intestines and with his mind power cleaned all of her system, working on her brain, stomach, intestines, etc.

You can watch the Testimony clip by visiting www.powerofraffael.com

Could you dial up your buddy Raffy and ask him to please stop staring at my half digested lunch. My rug needs a good power cleaning, can he help? <_<

TAKE A HIKE - no snake-oil salesmen allowed! :angry::angry::angry:


Richard

"Not all who wander are lost" - J.R.R. Tolkien

Diagnosed 3/8/05

Sister also Celiac

Risus remedium optimum est

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ALFRED!

How dare you! Want to stay sick? You have lost your mind, I read up on this gentleman and he is being investigated for fraud in two different countries! How dare you!

Nobody here WANTS to stay sick....and EVERYONE here does every last thing imaginable short of getting a new immune system to stay helathy. You have no right, no background and no place saying things like this.

This HEALER is a dog and pony show, nothing more that the admission to get in to where he's set up shop and peddle his ridiculous garbage.


Quod me nutrit, me destruit

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Google him, and several radio programs in his native country.

Stop advertising for some dog and pony magic show. PLEASE.

Narrow minded? You have no clue.

What I don't buy into, is a dog and pony show that is capitalizing on a disease that is just now coming to the forefront of the medical community and gaining attention and capitalizing on people's misfourtunes.

It's low.

Now go away, we don't want you here.


Quod me nutrit, me destruit

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I have ggogled him several times.

did it hurt?


Richard

"Not all who wander are lost" - J.R.R. Tolkien

Diagnosed 3/8/05

Sister also Celiac

Risus remedium optimum est

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If you really wanted to just help people by giving the information, you wouldn't have pasted the same story in almost every section and in the middle of other topics. THIS is what WE especially don't want.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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OK guys I give up

Good, BYE!!! Don't let the door hit you on the way out!!!


~Angie~

Gluten free since May 2004

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You mean, he is a miacle man because he has people meditate and for some reason that helps conditions.

Wow! He is the second coming, meditation eases ailments. Go figure.

STOP IT!!!!!!!!!!!


Quod me nutrit, me destruit

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OK...positive blood work, high related inflammation levels (c3c, c4c, and crp)

I have:

Joint pain

gas pains (some times even on an empty stomach)

the big D from time to time

constipation from time to time

weightloss (I was 318 5 mos ago, I am now 253, which isn't bad because of the weight, but to me its bad because of how I am lsoing it)

Salt bothers me (not already in food, but like if its sprinkled on top...WHY????)

I have to have meats with no antibiotics, or preservatives (very expesnive, but I get sick otherwise)

I get pains all over my body, even muscle twitches

Dizziness

Nausea

I run fevers from time to time

I get dehydrated, really easily, I mean really easily

I have DH on my face, although the rheumatologist wants be to get biopsied on the skin in a couple of plcaes because he said it could also be discoid lupus???

Most of the time I am falling on my face with exhaustion,

Then there are times that I can't get to sleep at all (what that heck is that?)

So...to make a long story short....my gp was a really winner when I went the other day. he said and I quote: "You went to a rheumatologist (my thought while he was talking: yeah winner because you weren't doing anything, he took the time and found something) I think you have a whole lotta nothing going on"

So I called the medical group, the head doc said it was insensitive and he concurs with the ER doc from last week. I owe it to myself to get the discoid checked out by a derm, but...and he said a big but....Celiac can really tear your system apart, and with as scary as it may be,,,all the thinsg you just told me, Sprue can cause?

Really, I was gluten free since June doing fairly well. Then my new GI doc had me start a challange, which is what landed me in the ER, 2 weeks ago. and I am still sick from it??

I hate to whine the same story thats been lamented about on here....but is Sprue really that wicked that it can do all that???? Wow.

I just read on the scd info board about a salt issue - you say you are having problems with that--

"salted nuts have starch on them. Salt can have DEXTROSE put into it. Most salt w/ iodine in it has dextrose in it. So this can be a problem. Dextrose is illegal on the scd diet." They recommend getting the iodine from vitamins and use sea salt. I have been using Himalayan Salt.

For me, the sleep issue got better the longer I was gluten free. Hope you feel and get better.


Lee

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