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Blood Test Negative?

debbie7730

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debbie7730 Newbie
debbie7730
Posted

Hi. My mother was diagnosed with Celiacs disease around a year ago. I have been having a lot of similar GI problems as she did -- heartburn, weight loss, diarrhea. My GI doctor has diagnosed me with gastroparesis and doesn't think the rest of my problems are the result of Celiacs. My blood test for the disease was negative, but I have heard about a lot of false negatives with the test. My doctor keeps saying that the test is a good one. What do people think? Can I still have Celiacs disease? I cannot get my GI doctor to take this seriously. I honestly believe that a lot of my problems could be explained by Celiacs. I am frustrated and miserable with the symptoms that I have.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately the tests do have a fairly high false negative rate. Celiac is also strongly genetic. Since you have a first degree relative already diagnosed it would be a good idea to go ahead and try the diet after all celiac related testing is completed.

9na Rookie
9na
Posted

My doctor told med that between 5 and 15 % (I think that was it) of people with celiac will have a negative blood test.

Mine was negative, too, but my doctor still ordered me a because she strongly believe my problems are gluten-related. (I haven't had the biopsy yet, but will go gluten free after no matter what the result..)

Skylark Collaborator
Skylark
Posted

15% is optimistic for false positives! I think it's more like 20% or higher.

Have you considered just trying the diet? Your GI does not control what you put in your mouth. Celiac runs in families, as does gluten intolerance.

NCCarolB Newbie
NCCarolB
Posted

I am so glad to see this question! My 14-year-old son has recently been diagnosed with Celiac. Since my daughter (age 21) has been having extreme GI difficulties for the past 12-18 months, I wanted to have her tested as well. My daughter's GP ordered the blood tests, which came back negative, then referred her to a gastro. The gastro says that since the blood work was negative, there is no reason to do the small bowel biopsies even though she is already scheduled for an endoscopy. I had her call back and insist that the biopsy be done so we'll see how that works out.

Are biopsies more accurate for diagnosis? Thanks!

ravenwoodglass Mentor
ravenwoodglass
Posted

I am so glad to see this question! My 14-year-old son has recently been diagnosed with Celiac. Since my daughter (age 21) has been having extreme GI difficulties for the past 12-18 months, I wanted to have her tested as well. My daughter's GP ordered the blood tests, which came back negative, then referred her to a gastro. The gastro says that since the blood work was negative, there is no reason to do the small bowel biopsies even though she is already scheduled for an endoscopy. I had her call back and insist that the biopsy be done so we'll see how that works out.

Are biopsies more accurate for diagnosis? Thanks!

No the biopsies have the same 20 to 30 percent false negative rate as the blood work. After the biopsy is done do a trial of the diet. You don't even need to wait for the results. Make sure you get tested also as well as all other first degree family members.

  • 3 months later...
PatD Newbie
PatD
Posted

Hi!

I tested negative for Celiac Disease, however, I am severely gluten intolerant. I am told that this is the precursor to Celiac, but I am still testing negative.

In my opinion, the best thing to do is eat gluten free. If you start to feel better (as I did), just go with it, regardless of the negative test.

Let me tell you... I went through HELL for almost two years... I went to three GI's and no one even considered Celiac, food intolerance or food allergies! Unbelievable!

FINALLY, one doctor said you may have Celiac. He is a Chiropractor! He said to ignore the tests... It doesn't always show up. He suggested I go on the elimination diet. Removing any food that could possibly cause reactions from my diet (soy, eggs, gluten, etc. etc.) . I stayed on that diet for 2 months, and then added food slowly back into my diet. I started feeling much better. I added gluten into my diet and it made me VERY sick... So, I stopped eating gluten, and started feeling better again (although it took a long time to heal... I had severe inflammation/ulcers/etc.)

I have even read that a endoscopy is not 100% accurate. They can pull biopsy samples of your small intestine that do not show any damage, and tell you that you do not have Celiac Disease, when you may very well have it.

Follow your instincts. The GI community seems to be clueless!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

~ Pat

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