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Doc Only Did A Stool Test, It Was Negative

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Posted 06 February 2012 - 03:29 PM

I have been gluten-free for 5 months and was under the impression I'd been tested fully for celiac and tested negative. (I get really ill now from gluten so it's a given I have an issue regardless of testing). I discovered at my latest doc appt that he only did a stool test (I know he checked for malabsorption issues and I was ok; not sure if there are any other stool tests he might have done to check for celiac) so based on that he decided I do not have celiac.

Do you all consider this testing valid? I confess diagnosis is important for me but I guess that ship has sailed bc I'm not able to tolerate gluten long enough for a challenge. I'm just frustrated bc I thought I was totally tested.
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Posted 06 February 2012 - 03:42 PM

There are many different stool tests. Who knows, other than your doctor what he exactly ordered. If you are in the US you have a legal right to copies of all tests that are done. You may want to get copies of all stool and blood tests and if a celiac panel is not in the blood work fire the doctor.
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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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