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Celiac Disease Forum


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5 replies to this topic

#1 debmidge

 
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Posted 15 October 2005 - 04:13 AM

Just wanted to say I am grateful that this board exists.
I don't know what I would have done without it.
I think about this everyday when I use it.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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#2 Canadian Karen

 
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Posted 15 October 2005 - 09:03 AM

Me too, I have "met" so many wonderful, kind people here on this board. I feel proud to be part of it!

Hugs.
Karen
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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......

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#3 ianm

 
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Posted 15 October 2005 - 10:02 AM

There is no better source of information and support than this forum.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#4 Carriefaith

 
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Posted 15 October 2005 - 11:55 AM

I agree, this board is great :) I learn a lot of information on this board.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#5 nettiebeads

 
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Posted 15 October 2005 - 12:40 PM

Just wanted to say I am grateful that this board exists.
I don't know what I would have done without it.
I think about this everyday when I use it.

<{POST_SNAPBACK}>

It seems everything happens for a reason. I finally searched out and found this board after going it alone for 9 years. There was one incident that was the proverbial straw a few months ago and I HAD to find somebody to help me through.
I have learned so very much in two months than I had in 9 years! I go to bed every night thinking of all the people I've met here and wondering how they are doing, getting better, feeling better...
HUGS to all :D :D :D
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gluten-free since Oct 1996

#6 happygirl

 
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Posted 15 October 2005 - 01:44 PM

Ditto!
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