How Common Are False Negatives?

[Cam's Mom]

Hi! You all seem to have more knowledge and info than the docs. Please tell me your thoughts on this.

I have had copious "D" for about 5-6 year. It happens at least 3-5 times a day, very unpleasant! I don't really have stomach pain beyond the D but definitely looks like malabsorption by the state my previous meal comes out (especially veggies) - sorry to be so graphic. Anyway this seems to happen every time I eat - about 20 minutes after I put anything in my mouth.

I am also in a massive brain fog. I consider myself to be pretty "with it" but staying on top of everything is totally exhausting me and used to come far more easily. I have a persistant rash on the sides of my face, next to my nose that the doc says is eczema, dematitis or just dry skin. And, also get migraine headaches at least 2 times a week.

So last year, after explaining all of this to my doctor, she suggested that it could be celiac and ran a whole celiac panel (this was the first time I ever heard of it). The test results came back very low (like 2 for ttg). So I just continue to feel crummy!

Meanwhile, in the last year, my dd, whi is 6, has been dx with juvenille diabetes and now celiac (her ttg was 181 but other numbers were within normal range). Her dx was confirmed with a biopsy. So, she is now on a gluten-free diet - and I know that I should be too - I am just too exhausted and mind muddled to do it, although I am going to re-double my effort.

I have asked the doc. to re-run my celiac panel (as well as everyone else in my family). She said she would but that she really doesn't think it is celiac because my numbers were so low. Are false negs common? Also, I think that at the time I was tested I was "avoiding wheat" because I noticed that it hurt my stomach but as I now know, I was far from gluten free. Would a simple avoidance skew the numbers in the test results?

She has also refered me to a GI but I feel like it is a waste of time and money if the celiac panel comes back neg. again. I'm going to work harder on being gluten-free as I know that is the only way to get an answer but your thoughts on false negative blood work would be really appreciated.

Thanks!!!

[aikiducky]

The way it works is celiac is a progressive disease in a way, you might have symptoms before you have extensive damage to the intestines, and bloodwork results are more likely to give false negatives if the damage isn't very far developed yet. One thing you can do is put up with the symptoms, keep eating gluten and test periodically to see if the numbers go up at some point in the future... not what I'd recommend but keeps your doctor happy....

Or you can go completely all the way 100% gluten free for a while and see what happens. If you have a daughter with celiac i think it's quite likely you'll feel better gluten free as well.

Pauliina

[ravenwoodglass]

Please, please, please do not trust those negative tests. I did and now I have some permanent damage that might have healed if I had showed positive on the tests when they first did them. I have always come back negative but I clearly am celiac. It was not till I was finally diagnosed after 15 miserable years that they tested my kids, they both came back positive. If your DD is gluten-free it should not be that difficult, in fact it would make it easier if your household became totally gluten-free. Let the folks that think they don't have a problem get their poison (gluten) elsewhere and make your home dedicated gluten-free, if not for your sake for your DD's. It is much easier to avoid crosscontamination and temptation from gluten foods if they are not in the home.

[CarlaB]

I had negative tests after not eating obvious wheat for three years. I know I was not gluten free. I think I just caught it early, but I also think the tests were wrong because of my time off wheat. Because I have kids, I got tested by Enterolab because they can find the antibodies more easily since they check the intestines (stool sample) rather than blood. I wanted to know if it was a mild wheat allergy or if I really was gluten intolerant so I would know whether to test them. The one in my avatar tested positive with Enterolab and today is her first day gluten-free. My other daughter who gets heartburn tested negative, very strongly negative. We have three kids who have not been tested at all.

[Guest nini]

my daughter tested negative after I was dx'ed, but she definitely has Celiac, she definitely has a major problem with gluten, and she is so much healthier without it.

I say that the best diagnostic tool is how your body responds to the diet... Yes there appears to be an unacceptably high level of false negative test results so I personally don't trust them. If they are positive then there is no doubt, but they are not sensitive enough to detect the early stages of this disease.

[key]

My son's blood work was also negative for celiac. THey say in young children this can happen. He definitely had a problem with gluten. He had diarhea (undigested food), crabby, malnourished, etc. We removed gluten and he is a different child. He was around a year when we were testing him.

I had tests after being gluten free for two months. My ttg was like 17, 18 was positive. My tests were read to me as borderline celiac. He wanted to do the biopsy, but I was afraid that it would come back negative since I wasn't eating wheat and I didn't want to make myself sick to find out. I had another son tested and his results were 0. He had no sign of it. My doctor did say that your number should be 0 if you aren't having any problems with gluten.

I bet you would feel better without gluten. Once you have done it and you feel so much better, it will be worth it. You can do it. Your daughter is already doing it.

Monica

[mommida]

I had a really ignorant doctor that said it would be just fine to be on the gluten free diet and get the testing done. His theory is... people are not capable of being gluten free and the tests are soo accurate they would catch it. Well my tests were negative, my daughter's blood panel only had one slight elevation, and my son's was negative. We tried to do the gluten challenge for testing, but it was not worth ending up in the hospital for dehydration. We went gluten free again so my daughter could get well enough to get out of the hospital. We are all doing much better on the gluten free diet.

L.