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Blood Test Issue
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3 posts in this topic

Spent the last month in and out of the hospital due to blockages and twisted small intestines but after a battery of tests, nothing was found. CT scans and steady X-Ray motoring confirmed these small intestinal blockages and after the Exploratory Laporatomy the surgeon found nothing.

After the Surgery, the blockages continued and the pain increased which brought me to the E.R. and admitted three more times spending the last month in and out of the hospital as they waited for the blockages to solve themselves.

The only other tests included the x-ray which included drinking the barium and PBG test.

And the most confusing part was the fact the the blood test that they performed to confirm my Celiac disease stated that my gluten sensitivity was normal even though when I first was diagnosed after a upper and lower GI biopsy and blood test:

Posted 26 May 2009 - 08:17 PM

Result Flag Reference Range

TTG AB IGA SCR W/RFX EMA IGA

TTG AB IGA 85 H 0-19 Units AR

]INTERPRETIVE DATA: Tissue Transglutaminase Antibody, IgA

IgA antibody against human tTG, if detected at a level greater than 19 units, may suggest the possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis

RFX ENDOMYSIAL TITR 1:10 H <1:10 AR

TEST INFORMATION: Endomysial Ab, IgA

Endomysial antibodies are screened using an ELISA tissue transgl~taminase (tTG) assay. All samples which are positive are titered on endomysial tissue by IFA. The endomysial antigen has been identified as the protein eross-linking enzyme known as eissue transglutaminase. Presence of IgA antibodies against human tTG suggests the possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis.

AR - TEST PERFORMED BY ARUP REFERENCE LABORATORIES 500 CHIPETA WAY, SALT LAKE CITY, UT 84108-1221

FLAGS: L=Low, LL=Critical Low, H=High, HH=Critical High, D=Delta, A=Abnormal

Acct# G00709522247 ** END OF REPORT **

Loc: G.LABOP -

----------------------------------------------------------------------

WHY NOW DO THE BLOOD TEST STATE I HAVE NO GLUTEN SENSITIVITY?

That was three years ago and I do follow the diet as close and religiously as I can, is it possible due to that am conscious with what I do digest state a false-negative?

They released me yesterday and told me that I had to go to a facility that can do the PILLCAM endoscopy procedure.

Which seems kind of sketch, especially due to the frequency of my visits, especially after the surgery where there was a 9" incision and nothing was found.

This has deeply effected my life in every way; work, school, and much more monetary commitments that I cannot take care of with out the work. A very big set back.

Any Suggestions???

Any Answers???

Thank You

Josh

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If you have been gluten-free for three years, you should absolutely expect to test negative. The tests look for antibodies which your body produces in response to gluten. No gluten--no antibodies.

The negative results confirm that your diet is, in fact, gluten-free.

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I am sorry you have having all these intestinal blockage issues. It must be very frustrating for you. Perhaps the pill cam will show something that a laparotomy could not.

As Peter says, if you have been religiously following a gluten free diet you should by now test negative for gluten antibodies, because they only appear in the presence of gluten. Your doctor should have explained this to you, or perhaps he didn't know? :unsure: The pill cam also should not see any damage in your small intestine caused by gluten because that should have healed in three years. But it can see what is causing your current problems perhaps?? It seems to me to be logical next step since nothing they have done so far has been able to pinpoint problems.

Let us know how the pill cam turns out. :)

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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