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Less Sensitive....testing?


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#1 henny

 
henny

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Posted 18 December 2010 - 06:28 AM

I have been gluten free for over 2 years. When I went gluten free I was SO sensitive to it. My family all have celiac. I never got tested, since the gluten-free diet seemed to solve all my problems and my family history was so strong.

Fast forward to now. I got glutened the other day in a big way and had little to no symptoms, which throws everything into doubt now for me.
Should I start eating gluten again and pursue testing? Do no symptoms mean I'm not celiac after all this time? What the heck is going on?

Thanks for listening...very confused now.
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#2 ravenwoodglass

 
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Posted 18 December 2010 - 06:46 AM

The choice of whether to do this is up to you. You were having symptoms, have a strong family history and going gluten free took care of the issues. False negatives with testing are all too frequent. Personally I would be thankful that your reactions are not real severe but I would not go back to a full gluten diet. You need to keep in mind that until not too long ago children were considered to outgrow celiac as after healing it can take a while for symptoms to reoccur. But eventually they do and they can attack any organ when they do.
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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 henny

 
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Posted 18 December 2010 - 01:04 PM

thanks for your thoughtful response.

It seems like every story I heard from people had them getting more sensitive with time, not less....is that not universal?

I am certainly grateful that my recent glutening did not leave me on the floor like it used to, but now all I can think about is C H E A T I N G! *evil laugh*
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