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Possitive Blood Test, Negative Biopsy, On To Genetic Testing.


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Posted 10 July 2014 - 07:08 AM

I had a positive blood test for celiac, then a negative biopsy. They are now doing genetic testing for celiac. I'm not sure what to think about it because all this testing came from a really bad case of arthritis at age 29, but it all started from taking a medicine that pretty much super charges your immune system. Anyone have any ideas on this?

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Posted 10 July 2014 - 11:38 AM

If you had positive blood tests you are celiac. There can be many reasons for a negative biopsy. Damage can be patchy and get missed. The genetic testing is not fool proof as even though the vast majority of celiacs have either DQ2 or DQ8 there are diagnosed celiacs that do not carry either of those genes. 

Since you have had your blood work and biopsy go ahead and start the diet. 

Welcome to the board and be sure to read the Newbie 101 thread at the top of the Coping section. Ask any questions you need to and keep in mind it can take a while for symptoms to resolve. 

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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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