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All Tests Negative?!

BallardWA

By BallardWA
in Coping with Celiac Disease

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BallardWA Rookie
BallardWA
Posted

I heard from my doctor on Friday, and have found out that all my tests (celiac, gliaden, allergy) have come back negative, BUT - he says- that does not mean that I am not allergic to wheat! Great. Now what? I have been gluten free for 8 weeks, and with a few setbacks, have to say that my symptoms (serious stomach pain, acid reflux) have pretty much cleared up. Dare I eat bread? Has anyone else had all negative tests? If so, what good are they? They cost over $1,000. It seems that everyone agrees that the serum celiac test is useless, but the allergy panel, too?

Any input would be appreciated.

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Ursa Major Collaborator
Ursa Major
Posted

Did you have the testing done AFTER you were gluten-free for a few weeks? If the answer is yes, then the testing was utterly useless and doesn't mean a thing. Because for the test results to be valid, you have to be eating gluten every day, and can't start the diet until after the blood is drawn.

It seems to me that your results are false negatives. What a waste of money! At least your doctor is partially right. Just because your test results were negative doesn't mean that you don't have celiac disease.

That your health problems are clearing up on the gluten-free diet really is all the proof you need. Keep up with the gluten-free diet, obviously you can't tolerate gluten.

So, no, please do yourself a favour and don't eat regular bread.

Since celiac disease isn't an allergy, allergy testing is useless for a gluten intolerance.

ravenwoodglass Mentor
ravenwoodglass
Posted
Has anyone else had all negative tests? If so, what good are they?

Yup. Over and over. But no doctor ever suggested the diet. Up to 30% of us will have negative blood tests, even if almost dead.

Go with your gut.

elye Community Regular
elye
Posted

This is a timely thread, as I just posted yesterday about my husband, who just had a high level of the three gluten antibodies detected in his stool, along with an excessively high fecal fat count, through the Enterolab fecal test. This is after a "very negative" blood panel result, and "negative" biopsy findings. Next to dietary response, which I believe is the most accurate diagnotic tool around, the stool test is probably the most accurate of the tests that can be run to detect gluten intolerance.

BallardWA Rookie
BallardWA
Posted
  • Author

Did you have the testing done AFTER you were gluten-free for a few weeks?

YES- I was gluten-free for six weeks before the blood draw because the first sample got lost!

The doctor insisted that he could still tell if I was gluten intolerant because it takes much longer for the antibodies to leave the blood - huh? Maybe I am being taken for a ride. This is a very frustrating process, and I can't understand why there is no concrete way to diagnose this thing (other than the wait-and-see variety).

dbmamaz Explorer
dbmamaz
Posted

I also got a negative celiac panel after being off wheat for 6 weeks, but definitely felt a lot better. It really threw me for a loop. However, I had also ordered a blood test from A.L.C.A.T (you can look them up on line, but if you spell it out here without the dots it will get changed .. ), when I'd been off wheat for 2 weeks. I showed sensitive to gluten, casien and candida, as well as about 50 foods. Now i'm on the elimination diet from hell . ..

Anyways, if you doubt that going off wheat was responsible for your symptoms, you could always eat a piece of bread and see what happens - I read one woman said she didnt believe she had problems after all, so she went out for pizza, and was so sick that night she's been gluten free ever since!

Everyone raves about the enterolabs test - it may be more accurate than the one I took, but mine tested for more different foods and didnt involve poo . . . lol

loraleena Contributor
loraleena
Posted

Your doc is so wrong. You have to be eating gluten for those tests to show anything. You'll have to eat gluten and get tested or you could get a stool test through Enterolabs which you can be gluten free for. Do you feel better gluten free? That may be enough answer for you. You could try it again and see if you have a reaction.

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JNBunnie1 Community Regular
JNBunnie1
Posted
Your doc is so wrong. You have to be eating gluten for those tests to show anything. You'll have to eat gluten and get tested or you could get a stool test through Enterolabs which you can be gluten free for. Do you feel better gluten free? That may be enough answer for you. You could try it again and see if you have a reaction.

You would have to be eating gluten for at least six weeks, is my understanding. It's not worth it. I'm not diagnosed, I had a negative biopsy too. But If you feel better, do you really need a test?

Genie75 Rookie
Genie75
Posted

Hi there,

All my tests are always negative as well. I've had the small bowel biopsy twice now, the blood tests, the allergy test. Always negative. Unfortunately, no-one told me that didn't mean I wasn't Celiac. That lead me to misundertstand, and eat glutens whenever I was "better', and then get sick again. What I finally learned is that I have to eat the glutens for 6 weeks to 2 months before the tests to get positive results on them (my doctors told me 1 to 2 weeks but the Celiac assocation informed me that a min of 6 weeks). I cannot do that cause I will be too sick.

So I'm learning to accept that I will never have a diagnosis from the doctors in my entire life, and that I am "self diagnosed". I had a hard time dealing with that. I am now past that though, and have accepted it. I have now gone gluten free for the rest of my life, as I am too sick otherwise.

Take good care of youself, and if you know they make you sick, stay away from them.

Best wishes, Janet

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