What To Do? Neg Blood Test - Positive Symptoms

[kel-kel]

My daughter (8yo) had stomach aches, headaches, behavior issues, mental fog for about 2 years before we went gluten free - and with that all her symptoms improved dramatically - no more stomach or head aches, significantly improved behavior and mental processing. After this we went back on gluten, all symptoms returned. Had blood testing done, came back negative. I was still not convinced, took out gluten again - and again all symptoms gone. We have stayed gluten free for 18 months. My question is do I need to pursue further testing to see if positive for Celiac? Anyone else have negative results initially? Thanks:)kelkel

[caek-is-a-lie]

Yeah I did. My brother and niece were diagnosed w/biopsy in 1999 so I had a blood test. It was negative (as in, the results fell within the acceptable range. I don't know if I had any antibodies or no antibodies.) Just a couple years before, I had developed Narcolepsy. In 2002 I discovered that avoiding grains and sugars almost eliminated my symptoms but it wasn't until a few months ago that I went 100% gluten free. I stopped getting sick from food, stopped running to the bathroom 5 times/night and my mental fog has disappeared. I also discovered that my non-epileptic seizures I've had for 10 years were 100% triggered by gluten.

Maybe if I went back on it for a few months I'd test positive for Celiac, but I worry I'd end up in the hospital, so I just don't eat gluten and accept that gluten is definitely my problem. I wish I had just gone gluten-free 10 years ago. My life would have been so very different!

It might be difficult dealing with doctors...without a diagnosis I get interrogated by the intake nurses at my dr's office ("well, what HAPPENS when you eat gluten..." oh the skepticism) but I don't care what they think (most of the time.) I just take care of myself. If you're healthier avoiding gluten, don't eat it. But I know there are those that will disagree about the diagnosis thing, so I'm sure you'll get lots of great input here.

[lizard00]

My daughter (8yo) had stomach aches, headaches, behavior issues, mental fog for about 2 years before we went gluten free - and with that all her symptoms improved dramatically - no more stomach or head aches, significantly improved behavior and mental processing. After this we went back on gluten, all symptoms returned. Had blood testing done, came back negative. I was still not convinced, took out gluten again - and again all symptoms gone. We have stayed gluten free for 18 months. My question is do I need to pursue further testing to see if positive for Celiac? Anyone else have negative results initially? Thanks:)kelkel

How long were you gluten-free before the testing? How long did you go back on gluten before you had the testing done? Once gluten is removed from the diet, it's very hard to get conclusive blood tests. The antibodies are only present when gluten is being consumed.

Welcome to the forum!

[kel-kel]

How long did were you gluten-free before the testing? How long did you back on gluten before you had the testing done? Once gluten is removed from the diet, it's very hard to get conclusive blood tests. The antibodies are only present when gluten is being consumed.

Welcome to the forum!

We had been off gluten for about 2 months then back on for atleast 3 weeks before testing. I don't know if that was back on long enough to have good test results or not. My thing is that I am keeping her gluten free because I know how it affects her. But I wonder if I need to know specifically if she has celiac for other medical reasons????

thanks

[kel-kel]

would the genetic testing for her be a good non-invasive indicator for her given my suspicions already??? kelkel

[lizard00]

The genetic testing may help, but it in itself cannot diagnose her. The percentage of people who carry the gene is large compared to the number of people projected to actually develop the disease. But if she's having symptoms, has a positive dietary response, and is positive genetically, a doctor may be willing to go with that as a diagnosis. Mine did.

If her symptoms resolve on the gluten-free diet, then you pretty much have your answer. What sort of advice did your ped give you? If her symptoms do not remain resolved gluten-free, then it would be time to pursue other testing.