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Celiac Panel Normal But Still Have Celiac?

hbelle16

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hbelle16 Newbie
hbelle16
Posted

Good afternoon. So heres the story...my four year old just got diagnosed with celiac. We were told to have the family tested...I figure it must be me carrying it because Ive had stomach issues all my life and my husband has had none and also my dad has a lot of stomach issues. Well I just got a call saying that the blood test came back normal. SO I was just wondering if anyone out there has had a normal blood test but still had celiac? Thanks!

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Marilyn R Community Regular
Marilyn R
Posted

Hi, and welcome to the forum.

You know the old saying "If it walks like a duck...?"

False negatives are commen. The best thing to do is to see if there is improvement from going gluten-free, imho. Others believe you should do a full gluten challenge (eat the equivalent of six pieces of bread a day, then get tested. The gold standard is, of course the endoscopy and biopsies to test for villi.

If I were in your shoes, I'd go for trying a gluten-free diet for the whole family and see if things improve. But plenty of people and most doctors would say I'm not giving good advice.

jenn42 Explorer
jenn42
Posted

My 11 year old DD was diagnosed in February with Celiac. Blood tests and Endoscopy were slightly postitive, but still positive. My DS, DH and I were all negative. My recommendation would be to keep your child on gluten and get an Endoscopy done if you want. I have noticed a huge difference in my DD since we have gone gluten-free. Her's is mainly behavior and headaches.

Good luck.

Cara in Boston Enthusiast
Cara in Boston
Posted

You can have non-celiac gluten intolerance and have all the symptoms but test negative. When my son was diagnosed (blood and biopsy) I realized I had all the symptoms and was tested too (whole family was tested). My first blood tests came back positive, but when I went to see the GI (celiac specialist) he re-did the test and it was negative. My endoscopy was negative too. I went gluten free with my son anyway and all my pesky symptoms were gone within weeks (some within days). My doctor has since diagnosed me with non-celiac gluten intolerance. Same symptoms, same treatment, will test negative. Strange.

Going gluten free will also help you with the diet for your child. Much easier to do when you are not alone.

Cara

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood test was negative but the GI did an endoscope to see if she could find a reason for my severe digestive issues and weight loss. I was told my damage was severe and most definately was Celiac.

About 20-30% of Celiacs test negative in their blood work.

mommida Enthusiast
mommida
Posted

One of the tests for Celiac panel is IGA. It is estimated that 30% of Celiacs are IGA deficient. That is why total IGA count should be done.

When we had discrepencies in genetic testing. Prometheus labs suggested there is at least a 30% error rate for any blood testing. This is to allow for basic HUMAN error. Mistakes in the blood draw, specimen handling, and lab reporting.

Now the medical community is admitting that Celiacs do exist with negative blood tests. This usually has a connection to more nuerological symptoms.

If you choose to do an endoscopy, the patient needs to be consuming gluten. An endoscopy may have biopsies taken from the correct areas to prove damage. It can also give a baseline of damage. Rule out/in any other associated disorders with the symptoms.

  • 3 weeks later...
hbelle16 Newbie
hbelle16
Posted
  • Author

thanks for all the answers...i went to the gi and he said if my husbands blood work is also normal I will get scoped, but also that eating gluten free might help me as well :)

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