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Blood Test Negative But...


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#1 SkylerGurl05

 
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Posted 22 December 2011 - 08:18 PM

So i told my doctor I wanted to do a blood test for celiac and I waited 2 weeks for the results.. Came back negitive she told me that doesnt mean I'm not Gluten Intolerant.. She said that I really don't need a biopsy cause it's just gonna prove what I already know.. I can't eat gluten.. So should I get a biopsy and see what's really going on down there? Or not?
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#2 ravenwoodglass

 
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Posted 23 December 2011 - 05:42 AM

If you are not already gluten free you could ask for a referral to a GI if you need a diagnosis for school or other family or yourself to take the diet seriously. You could also ask the doctor for a note for school/college if you are still in them so they will accomodate your needs.
It would be a good idea to post your test results as sometimes not all the ones that are needed are done or a doctor will consider a low positive to be negative. If you are in the US you have a legal right to all copies of tests and it is a good idea to get them.
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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 domesticactivist

 
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Posted 23 December 2011 - 08:26 AM

It's not for sure that a biopsy would prove what you already know. It could be positive or negative. The benefit of doing the biopsy would be to find the extent of celiac damage if there is some, or to confirm negative for celiac if there isn't. Either way it sounds like you'll want to try the gluten free diet for a couple months to see if it helps.
Did you get a copy of your test results? What was run?
I have a new post on the blog listed on my profile called "celiac testing myth #4 doctor knows best" that lays out all the typical celiac testing and why you'd want it.
  • -1
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#4 SkylerGurl05

 
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Posted 23 December 2011 - 09:38 AM

Here are the test results
H Pylori IGM Neg
TTG IGG....<3
TTG IGA....<3
NA+...142
K...4.2
CL-...109 High
CO2...22 Low
Glucose...72
Bun...11
Creat...0.67
CA...9.3
Protein total...7.8
albumin...4.1
alk phos...76
ast...19
alt...12
TBILI...0.5
Anion Gap...11
GFR...>60
Pretty much its been 3-4 weeks since ive ate gluten and im feeling better until ive been "glutened". Ive already got a note from my doctor saying im Gluten Intolerant for my work and i dont need one for my school because i take classes online! lol
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#5 SkylerGurl05

 
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Posted 23 December 2011 - 09:39 AM

It's not for sure that a biopsy would prove what you already know. It could be positive or negative. The benefit of doing the biopsy would be to find the extent of celiac damage if there is some, or to confirm negative for celiac if there isn't. Either way it sounds like you'll want to try the gluten free diet for a couple months to see if it helps.
Did you get a copy of your test results? What was run?
I have a new post on the blog listed on my profile called "celiac testing myth #4 doctor knows best" that lays out all the typical celiac testing and why you'd want it.


I cant seem to find that blog of yours! =[
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#6 Jestgar

 
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Posted 23 December 2011 - 09:46 AM

I cant seem to find that blog of yours! =[

The link is on her profile page, on the left, under 'website'
http://www.celiac.co...mesticactivist/
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#7 beachbirdie

 
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Posted 23 December 2011 - 12:36 PM

Here are the test results
H Pylori IGM Neg
TTG IGG....<3
TTG IGA....<3
NA+...142
K...4.2
CL-...109 High
CO2...22 Low
Glucose...72
Bun...11
Creat...0.67
CA...9.3
Protein total...7.8
albumin...4.1
alk phos...76
ast...19
alt...12
TBILI...0.5
Anion Gap...11
GFR...>60
Pretty much its been 3-4 weeks since ive ate gluten and im feeling better until ive been "glutened". Ive already got a note from my doctor saying im Gluten Intolerant for my work and i dont need one for my school because i take classes online! lol



I only see two celiac tests on your panel, two versions of the ttg. They should have done a serum IgA at least, anti-gliadin (which should be the deamidated version) and anti-endomysial. You should have further testing.

Although, unless you need a diagnosis for school or other purposes (as mentioned by another poster) you don't need a doctor's order to eat gluten-free. Just doing the diet will tell you a lot.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#8 domesticactivist

 
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Posted 23 December 2011 - 01:50 PM

Beachbirdie is right, you don't have all the necessary tests there. You can't even know the validity of any test involving IgA unless your Total IgA has been tested. I hope you were able to find my blog post - all the tests and descriptions are listed there. I'm not allowed to link to it which is why I didn't give you the link.
  • -1
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.




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