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6 replies to this topic

#1 mamaupupup

 
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Posted 07 November 2012 - 10:46 PM

Hi everyone,

Just a quick note to say that I appreciate you all very much. I had a rough night out at a great restaurant--the food and service were perfect, but one of my girlfriends questioned whether or not Celiac is an actual disease...oh boy!

I'm thinking of all of you--each one of us has far too many similar stories to this. Someday Celiac will be widely understood and accepted.

Until then, thank you all for being so supportive, helpful, and just plain wonderful!

Have a great night!
xoxoxoxoxox
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#2 ravenwoodglass

 
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Posted 08 November 2012 - 05:04 AM

Got that freinds email address? If you do maybe send her some links from the NIH or other reputable sites about the disease. Hopefully you didn't let that person ruin the event for you. At least the food and service were good and you know you can safely go back and have a good meal but perhaps without that 'freind'.
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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)

#3 shadowicewolf

 
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Posted 08 November 2012 - 05:58 AM

Ignorance is bliss as they say.
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#4 SMDBill

 
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Posted 08 November 2012 - 07:42 AM

That's like the argument that 'surely a little bit won't hurt you once in a while'. Ugggggg.
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#5 mamaupupup

 
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Posted 08 November 2012 - 03:38 PM

Thanks so much! I have to say I was a bit passive-aggressive on facebook today (I know she's on it constantly...). Here is my post:

I've been asked lots of Celiac questions recently and my actions to protect myself and my family have been called in to question as well. I am lucky enough to have the excellent care of Dr. Gregory Harmon and Nancee Jaffe from UCLA, my kids see Dr. Michelle Pietzak at Children's Hospital Los Angeles. These individuals are on the forefront of Celiac care and research. I wish everyone had access to such excellent healthcare, advice, and compassion.

I should have added: and the constant guidance and support from the wonderful people on the Celiac.com forum.

xoxox
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#6 GottaSki

 
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Posted 08 November 2012 - 03:56 PM

You are fortunate indeed to have Dr. Harmon - he diagnosed me at UCSD and I miss him very much!

Glad you found a safe restaurant - don't let the ignorant get you down.

I love your fb post - I hope your friend sees it and spends a little time educating herself - one person at a time - we will change the tide.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 mamaupupup

 
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Posted 08 November 2012 - 08:14 PM

Thank you!
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