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Negative Test Result, Still Think I Have It, Do I Need More Testing?

sliebman

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sliebman Newbie
sliebman
Posted

I was tested last week for celiac and blood test came back negative (just got results today)

Doc thought I have the disease, so started me on the gluten free diet......I feel wonderful!!!!!

I don't know what tests out the 5 were done.  I have had these issues for about 4-5 years, never knowing what the hell was going on:(  I am also lactose intolerant, so I know it is not that as I don't eat dairy.

Do I go back to the doctor and ask for the endo, do I research the online stool testing, or what do I do now?

I cant believe the negative results.....I haven't had diarrhea or any stomach cramping or "gurgling" for about a week, the best I have ever fealt!  and I am starting to feel better with regards to the tiredness I was having also

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notme Experienced
notme
Posted

how long had you been eating gluten free before the test?  you should get your test results (to see what you were tested for exactly) and you are the one billionth person a doctor has told to 'try' gluten free and then do a blood test.  if you are doing a good job with keeping your diet clean, your test will most likely come out negative.  i went through this myself.  the only reason i am not second guessing is because the damage was visible when i had my endoscopy.  doc said clear indicator of celiac and considering my body's good response to the diet <also used as a criteria point in diagnosing celiac)  shazam!  celiac.  i was extremely underweight and malnourished so that was the reason my gp doc suggested doing the gluten free thing; my gi doc didn't want to mess up my almost immediate weight gain (thank goodness!)  before the 'scope.  good luck :)

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

welcome  :)

 

here's the thing...if you want further testing, do not stop eating gluten.  You must be consuming gluten, including for the endo, in order for testing to be accurate. 

 

I would suggest getting a copy of your blood tests from your doctor.  A complete celiac panel is

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 

once you get your results, post them here with the reference ranges and others can comment on them. it is possible to have celiac with negative blood tests but get a positive on the endoscopic biopsies. here's a link for that Open Original Shared Link

 

It is also positive to have symptoms while ingesting gluten, getting negatives on all tests, but having symptoms resolve on a gluten free diet with NCGI (non-celiac gluten intolerance).  NCGI does not have the intestinal damage, but you must avoid all gluten.

 

Either way with celiac disease or NCGI, gluten is out and good health is in!  It's up to you if you want to pursue further testing for a definite celiac or NCGI diagnosis, but if you do, keep eating gluten. 

 

good luck!

 

EDIT: Arlene made a great point...how long have you been gluten free?  Your post makes it seems like you went gluten free last week AFTER the blood tests.  Is that correct?

 

I was tested last week for celiac and blood test came back negative (just got results today)

Doc thought I have the disease, so started me on the gluten free diet......I feel wonderful!!!!!

I don't know what tests out the 5 were done.  I have had these issues for about 4-5 years, never knowing what the hell was going on:(  I am also lactose intolerant, so I know it is not that as I don't eat dairy.

Do I go back to the doctor and ask for the endo, do I research the online stool testing, or what do I do now?

I cant believe the negative results.....I haven't had diarrhea or any stomach cramping or "gurgling" for about a week, the best I have ever fealt!  and I am starting to feel better with regards to the tiredness I was having also

answerseeker Enthusiast
answerseeker
Posted

I had negative results but my GI diagnosed me based on the positive response to eliminating gluten. My stomach would gurgle daily and I haven't had pain or gurgling since. He saw my weight loss, bloodwork showed some malnutrition, I already have another inflammatory/autoimmune disease (asthma) and GERD so he "clinically" diagnosed me. I don't want to eat gluten again to get an official diagnosis. I may do the gene test because I don't know my Dad so I wonder if it runs on his side of the family

notme Experienced
notme
Posted

 

EDIT: Arlene made a great point...how long have you been gluten free?  Your post makes it seems like you went gluten free last week AFTER the blood tests.  Is that correct?

oops!  did i read that wrong?  

 

anyways, i think a person's response to the diet is a huge factor.  also, has the doc tested you for other things ie:crohns or thyroid etc that could be wrong?  and vitamin deficiencies?  

AlwaysLearning Collaborator
AlwaysLearning
Posted

There are hints that new testing methods will be available in the future that may be more accurate, won't require an endoscopy and biopsy (use blood), and may even require shorter periods of retoxification.

If you don't have a need to get a definitive diagnosis of celiac now, it may be worth it to wait because you are already gluten free, though who knows how many years it will take for new testing methods to become available to everyone.

sliebman Newbie
sliebman
Posted
  • Author

because the diarehia and gurgling had been so bad i was not eating anything except rice (gluten free), a nice bland food for about 2-3 days before the test

i am going to get my test results and see if i can post them here

i have not been tested for chrones, or thyriod (spelling may be off, late at work) but i do have acid reflux

not so sure that i want to go back on gluten for tests though, but i read that the stool test does not require you to be on gluten to get results, anyone know if that is true?

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kareng Grand Master
kareng
Posted

because the diarehia and gurgling had been so bad i was not eating anything except rice (gluten free), a nice bland food for about 2-3 days before the test

i am going to get my test results and see if i can post them here

i have not been tested for chrones, or thyriod (spelling may be off, late at work) but i do have acid reflux

not so sure that i want to go back on gluten for tests though, but i read that the stool test does not require you to be on gluten to get results, anyone know if that is true?

There are no valid stool tests for Celiac disease or gluten sensitivity. 2 days gluten-free shouldn't make any difference.

sliebman Newbie
sliebman
Posted
  • Author

I had had bouts of diarrhea  that were painful, but the worst for me was the constant gurgling in my stomach.  because I was lactose intolerant, my husband would always say, are you sure you didn't eat anything with milk in it?  Then I would second guess myself. 

At this point, I am enjoying feeling normal, but I may go back on gluten in a few weeks and see if the symptoms return

sliebman Newbie
sliebman
Posted
  • Author

 

 

I got a copy of my test results, here is exactly how they read:

TIS TRANSGLUT AB, IgA.......<1.2

TIS TRANSGLUT AF, IgG.......1.2

 

thats it, just those 2 tests

also another question, i am lactose intolerancet, but used to be able to eat small amounts of the harder cheeses without an issue

since going on the gluten free, its seams that my lactose intolerance has kicked up a notch, is that normal at first?

 

i am going to go back on gluten next week and see if my stomach gurgling and diarrhea come back......if so, maybe i need to research NCGI?

foam Apprentice
foam
Posted

The antibody test is useless anyway. Get the gene test done and if you have the gene, don't eat gluten ever again. It's as simple as that, black and white. Almost as black and white as the fact that if you are lactose intolerant you are celiac, might be early stage but still early stage is better than giving up late stage. I'll put my money on the gene test being positive.

answerseeker Enthusiast
answerseeker
Posted

Is the enterlab gene test legitimate? I have Kaiser and the don't do the gene test

sliebman Newbie
sliebman
Posted
  • Author

I was just going to ask the same thing, bout the enterolab gene testing.....or do i need to go to my doctor and request the gene test?

I dont really care for the doc i am seeing right now, and if the enterolab is accurate and ok, then i might go that route

Anyone have any opinions on the enterolab testing? (gene specifically)

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