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Getting Tested For Official Diagnosis


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#1 SMDBill

 
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Posted 29 October 2012 - 11:37 AM

As mentioned in a few of my posts, I self diagnosed. My symptoms all pointed to it, I went gluten-free and they all (plus some I didn't know were symptoms) disappeared. I got glutened and they all returned. I can tell I'm not absorbing again from the glutening so my iron and other levels are out of whack.

Anyway, appointment made for 5 November with the gastro. I listed 6 pages of info and symptoms to take with me, along with results from going gluten-free and every ingredient of every supplement I take. Praying to get medical diagnosis to have in my record so I can get a full battery of tests for vitamin and nutrient levels. And then I can get official support to have the kids tested.

Fingers crossed! I just got glutened a little over a week ago so my antibodies should be in full swing.
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#2 mushroom

 
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Posted 29 October 2012 - 11:54 AM

How long have you been gluten free because it takes a while for the antibodies to build up in sufficient numbers.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 ravenwoodglass

 
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Posted 29 October 2012 - 12:42 PM

Just because your symptoms are in full swing after a glutening doesn't mean you will have positive blood tests. Some don't have positive blood tests even if they have never gone gluten free. If you have been gluten free for any length of time hopefully you have continued to gluten yourself. If you haven't make sure you let your doctor know right away. The doc may want you to do a challenge before testing.
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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)




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