False negatives for celiac are especially common in children, but can happen to adults as well. Many false negatives happen because the doctor doesn’t know how to get a valid result. Other times the tests just don’t reveal the damage that is being done, or the people examining the biopsy aren’t properly trained. Here are some of the common reasons for false negatives:
- Not enough detectable damage has been done yet (very common in children, even with severe symptoms)
- The doctor did not make sure you were on a gluten-heavy diet for several months before testing, and you were gluten-light or gluten-free already
- The doctor did not know to test for total IgA, and that a patient with deficient total IgA can not get an accurate diagnosis
- The doctor biopsied the lesion of dermatitis herpitiformis rather than the clear skin adjacent to the lesion, where the IgA is
- The doctor did a colonoscopy instead of an endoscopy of the small intestine
- The doctor did an endoscopy, but just looked around and thought the villi looked ok rather than taking samples and sending them to the lab to be examined under a microscope
- The doctor did not take enough biopsies from different areas of the small intestine since damage is not uniform in celiac. The typical recommendation is 4-6 samples, but some say as many as 11 are necessary.
- The lab did not correctly interpret the biopsy.
- You used steroids – even just topical steroid cream, within the past 4 weeks!
If you think human errors could have caused your negative results, you may want to stay on gluten and get retested. If your tests appear to have been valid, you can be pretty sure you don’t have celiac disease! If you’ve still got symptoms, you’ll want to work with your doctor to look into other potential causes.
But since celiac disease is just one flavor of gluten intolerance, you still have one more step to take in order to rule out gluten as a source of the trouble. Go gluten-free for about a month, then reintroduce gluten. If you feel better without gluten, and worse with it, you’ve got at least a part of your answer.
So… Negative Results = No Problems? Myth: Busted
Stay tuned to find out about the other ways gluten can affect the body, and check out the other myths we’ve exposed so far:
- Celiac Testing Myth #1 – No Symptoms = No Celiac
- Celiac Testing Myth #2 – Go Gluten-Free First
- Celiac Testing Myth #3 – Gluten-Free 4 Life = No Reason to Test
- Celiac Testing Myth #4 – Doctor Knows Best
- Celiac Testing Myth #5 – DNA = Proof
- Wheat Allergy and Non-celiac Gluten Intolerance
This post is on Freaky Friday on Real Food Freaks!