Diagnosis and Test Results

[cmsteph]

I have been struggling with  symptoms for over a year and had lots of other testing done by my GI.  She did the celiac disease blood test a few weeks ago.  It came back positive for the two genetic markers but my antibodies were negative.  I received the results by phone from the (stupid) nurse who only relayed to me that "your tests showed that you are positive for Celiacs Disease.  you need to go on a gluten free diet and follow up in a few months".  I was so surprised by what she said it didn't even occur to me to call the doctor directly so I took it upon myself to research the disease and going on a strict  gluten free diet.  The first two weeks were horrible!  EVERYTHING I ate gave me diarrhea.  After two weeks, I started to feel better but anytime I inadvertently ate gluten by accident or was cross contaminated, I had horrible diarrhea again.  I spoke with my GI doctor today (I work at the hospital where she works) and she explained the blood results better to me.  (I still haven't expressed my anger about the nurse to her yet...but I will!)

It doesn't make sense to me that I have the gene, have been experiencing IMO full blown symptoms (significant weight loss, malnourished, diarrhea, migraines, increased depression/anxiety, etc) but my antibody test was negative.  Could it be lab error?  I asked about an endoscopy and she said we could do it but it still may not confirm the disease.  I've also researched IBS and I don't seem to match up with those symptoms.

Part of me wants to know if I have a gluten intolerance or the actual disease.  Either way I'll continue to follow the gluten-free diet but I think it's important to know if I have an autoimmune disease correct?  Or does it?

Just looking for some guidance...

[cyclinglady]

I am sorry that you are sick!  ?. 

I think you need to find out which celiac antibody tests were given.  Often just the TTG Is ordered for initial screening.  This test catches most, but not all celiacs (like me!)   You also need to see if they gave you the igA deficency test too.  

Here are the tests:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

 

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You can go gluten free, but knowing if you have an autoimmune disease is helpful.  celiac disease is genetic (you have the genes, but so does 30% of the population and that's why the gene test is used only to exclude celiac disease and not diagnose it).   All family members should be tested even if they are symptom free.  

I hope you figure it out and I am sorry that you had such a horrible experience.