Negative Blood Test, Still Possible To Have Celiac?

[cwnhokie]

Hi there,

This forum seems to be full of good info.  I'm not sure I have enough info to properly ask my question though, but I'll try.

My son has been feeling badly for about a year.  He has had GI symptoms for about 6 months.  He has nausea, diarrhea, headache, fatigue, body aches, chills, hot flashes, weight gain, and most recently a kidney stone.  He is 12.  So far all of his blood work has come back normal.  He had a blood test for celiac but I can't remember what it was exactly and my dr hasn't given me the report.  They did fax it to his GI and he said that what was done was normal but that it wasn't complete.  He had a stool sample that showed inflammation in the gut and microscopic blood so he had an endoscopy and colonoscopy yesterday.  The GI said visually everything looked good.  We are now waiting on biopsy results.  Is it still possible that the biopsy will show celiac when everything else has been normal so far?  Just trying to figure out what to prepare for.  On one hand we are hoping that is not it, but on the other hand we are getting pretty desperate for answers.  He is currently on modified home bound for school and is no longer participating in sports.  Thanks for you help!

[kareng]

Its possible.  It really depends on how thorough they were with the blood tests. Some people don't make enough of the stuff one of the tests look for - so that test doesn't work for those people.

 

 

 

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[JodyM75]

I had a biopsy done when I was going in for a routine EGD (I have a hiatal hernia and get these every 5 years).  The results came back with mild to moderate damage consistent with celiac.

 

I had blood tests two weeks later that were normal, no antibodies.  Is your son currently eating gluten?  You need to be on a gluten diet for the bloodtests to mean anything.

 

You need ot make sure, though, they are sending you for the right test.  My doctor originally gave me a bloodwork form to check for lupus!  The test came back negative for lupus, but I had to request the correct bloodwork form and then fight not to pay for the one done in error.  Good luck!

[cyclinglady]

Make sure you had the complete celiac blood panel. Your GI doc did say it was incomplete. Get copies of the lab reports. Here is a list:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

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

Welcome to the forum and let us know how it goes! Hope your son feels better soon! Keep eating gluten until all testing is complete.

[Cara in Boston]

My son was only positive on some of the blood tests, perfectly normal on the others, so if you were not given the complete panel of tests, it could be missed.  Also, some people (esp. kids) never have a positive blood test.  It is possible to have negative tests and still have celiac.  Another thing to consider is non celiac gluten sensitivity.  Same symptoms, just no positive blood tests . . . 

 

A biopsy can also be negative and that doesn't necessarily rule it out.  The damage can be missed by the doctor.  

 

After he's had all the tests (have the blood work re-done) you can still try the diet.  Think of it as the "final" test.  If his symptoms improve, you will know gluten is the problem.  Keep a journal of his symptoms since the change can sometimes be gradual.  You might not notice it at first.

[cwnhokie]

all the biopsies came back normal.  He says that doesn't correlate with the stool sample findings of blood in the stool and inflammation in the gut and he doesn't know why.  said there maybe something going on in the part of the small intestine where they can't get the scope.  Said we could get a better look with an mri or a capsule endoscopy.

[cwnhokie]

Update

 

The GI did another stool sample which came back normal this time.  We went to see an interative medicine doc who ran a bunch of tests.  We haven't gotten everything back yet but she said that she has gotten back a test that says he's highly sensitive to cow's milk (normal <2 he was 16.8 and lesser to gluten (normal <2 he was 7) She recommended that he have no dairy and less if not eliminate gluten.  So he has been gluten and dairy free for about 2 weeks, we thought we saw some improvement in the first week and then he had a few bad days again, but not as bad as before.  He has not gotten back to as good as he was the best day last week and today he says he thinks he may have a stomach bug because he is so nauseous.   I've been trying to research what these tests actually mean and have found lots of conflicting info.  I'm so confused and frustrated and so is he.  Last Tuesday he had lemonade from walmart that said it could contain trace amounts of wheat and milk so we were blaming that, but I'm pretty sure his diet has been clean since then.  The dr also said his vitamin d was low and that his neurotransmitters where very interesting.  We go back on the 30th to get all the results.  He's been to school twice since Christmas for an hour each time and is on home bound.  He hasn't been participating in any activities like sports or scouts.