Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

jewlesD

Can Test Be Negative But Still Be Celiac?

Recommended Posts

just curious...my test came back normal, but I have been living gluten free for awhile and feeling better then I have in years...when I got the test I was eating a gluten filled diet, so thats not the issue. my doctor says that it is celiac even though the test came back normal...has anyone else experienced this?

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


just curious...my test came back normal, but I have been living gluten free for awhile and feeling better then I have in years...when I got the test I was eating a gluten filled diet, so thats not the issue. my doctor says that it is celiac even though the test came back normal...has anyone else experienced this?

After an extended period of being gluten free, it would take the equivalent of 3-4 slices of bread for an estimated 3 months for the test not to be jeopardized by diet.

Blood tests as well as biopsies can be inaccurate. It sounds like your doctor is on top of things. If you respond well to a gluten free diet, that in itself is a diagnosis. Whether you are gluten intolerance of Celiac Disease the prescription is the same...a gluten free diet.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites

Wow! Your doctor sounds like a dream! When my test came back negative my doctor didn't want anything to do with me anymore.


Amy

1989: I am diagnosed with IBS.

3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.

6/08: My Celiac test is negative.

7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!

7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.

8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

Share this post


Link to post
Share on other sites

Yeah,

I have a great doctor who is very supportive of the celiac diagnosis and is convinced it is 100% celiac since diet showed great improvement and lack of diet brings symptoms back real bad... I was just wondering if anyone else had a negative blood test, but still was diagnosed as celiac...and did they get the diagnosis only after a biopsy? I cant believe how many people have very unsympathetic doctors, although it took a long time to find this doctor..one who would actually listen and not think I was crazy!

Share this post


Link to post
Share on other sites
Yeah,

I have a great doctor who is very supportive of the celiac diagnosis and is convinced it is 100% celiac since diet showed great improvement and lack of diet brings symptoms back real bad... I was just wondering if anyone else had a negative blood test, but still was diagnosed as celiac...and did they get the diagnosis only after a biopsy? I cant believe how many people have very unsympathetic doctors, although it took a long time to find this doctor..one who would actually listen and not think I was crazy!

I agree, you are lucky with your doctor.

I was diagnosed by biopsy when they were looking for ulcers. I had the blood test 3 days later (still eating gluten) and was negative.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

Share this post


Link to post
Share on other sites