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Celiac Cost Me Everything


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109 replies to this topic

#106 ravenwoodglass

 
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Posted 23 September 2011 - 05:04 AM

You are an amazing person to have on this forum Raven. You are a voice of comfort and reassurance for people who are new here. I really value your knowledge and patience to answer the same questions over and over. You understand the questions are new to those who ask them.
I am so glad there is joy in your life again in the form of someone small and furry. Love to you xxx


Thank you. I get just as much, if not more, than I give though. This forum gives me a reason for all the years of pain and makes it seem like there was a purpose for that pain and all the struggles. We have so many kind and helpful people here. Many that went through the same issues I did. It does help keep us from feeling so alone and hopeless when our doctors can be of little help at times. I just wish I had found this place when I was first diagnosed as it would have helped so much. But eventually I did find my way here and I am very glad I did. :)
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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#107 cougie23

 
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Posted 23 September 2011 - 08:07 AM

Poor Raven...you are the light in the darkness...the voice of comfort...a pat on the back and a radeiant smile! so much of you comes throgh on these pages you have no Idea! your words are sooo apreciated and looked forword to...I know I'm not the only one who feels this way! I feel disapointed if I don't see that little doggie picture as I surf the content and a feeling of warmth when I do...it allways makes me smile!
Your story is heart breaking...so sorry about your little buddy!
The worsed thing about Celiacs is like you said...people act like its OUR fault!!! Like we can control this ...like ok you changed your diet...wheres the miricle...you must be full of shit!!! Or even worse all the years of every one thinking its in your head!Doctors, family ,friends...no one really understands....they can't beleive there can be soooo many deverse symptoms JUST from eating something!!! So WE must be a bunch of hypocondreacts....even though they can see the massive PAIN we go through ( they would'nt ask a one legged man to climb a mountain but expect us to)...they get irritated because WE slow them down...WE are INCONVEINENT....and they're just plain sick of listening to something they can't do anything about! After all your "MOM" Raven...your not suppose to be sick! Children are very selfish by nature its instictual..sometimes even Adult children( but by the time were adults we'er supposed to grow out of it and become more comunity aware...but it seems to be more common in the last few generations to be late bloomers in the unselfish part recently, trust me...Its not just YOUR kids...You can see it all around us)! Usereally it takes a few LIFE events to bring them around! hopfully this will happen BEFORE you join your little doggy friend!In the mean while OUR hearts go out for you...you have alot of people who care about you here...you've made alot of friends old and new...who are greatful just to have met you...even if its only over the internet!!!
Sweetheart..if I could scoop you into my arms like a little child (even thogh you are probably older than me)..hold your head to my bossom... stroke your hair and dry your tears...hold you close for several minutes...I would, just to show you how much you've touched me in such a short time!You are very cared about...mourn..but don't dispare...be strong...you can get through this ..you've survived this long..your a fighter, look at all the warm responces...don't worry someday your children will come to their sences!
you are a wonderful person...don't forget it! :)
soooo happy to hear about your new little friend .
P.S
good for you!!!
  • 0
Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)

#108 IrishHeart

 
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Posted 23 September 2011 - 12:35 PM

Raven, my first forum friend... :)

A good buddy of mine sent this to me when I lost my beloved lab, Gracie...and I am thinking you will appreciate the sentiment! So glad you are feeling better and that your new little love is settling in!


" It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life, gifts me with a piece
of their heart. If I live long enough, all the components of my heart will be dog, and I will become as generous and loving as they are." -Unknown

That's you, kiddo... ;) generous and loving!
My best always,
IH
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#109 ravenwoodglass

 
ravenwoodglass

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Posted 23 September 2011 - 01:22 PM

" It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life, gifts me with a piece
of their heart. If I live long enough, all the components of my heart will be dog, and I will become as generous and loving as they are." -Unknown


That is going to be printed out and placed on my frig in a place of honor right next to Rainbow Bridge. What a great thought. Thanks so much for sharing.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#110 IrishHeart

 
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Posted 23 September 2011 - 01:45 PM

You bet, hon! ;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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