Posted 07 November 2012 - 10:46 PM
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!
Posted 08 November 2012 - 05:04 AM
"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)
Posted 08 November 2012 - 07:42 AM
Posted 08 November 2012 - 03:38 PM
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.
Posted 08 November 2012 - 03:56 PM
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.
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
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