Negative Blood Test

[Laennie]

So I got a card from my doctor's office that said no signs of celiac disease. I also got a copy of the results but it's very confusing. I figured I'd type up what it says. I don't plan on doing the biopsy because the day after I had the blood test I went gluten free. It's been about 2 weeks and almost right away I noticed positive results with my GI symptoms. I usually have D almost every day, a few times a day, especially trying to get out the door to work in the morning. The only day that I have had D since is one day after eating cereal with regular milk in the morning, a yogurt before lunch & stroganof at lunch. Right after the yogurt I started not feeling so good & by time I got back from lunch I was in the bathroom. I have had some small yogurt pieces in a trail mix & I get real gassy & kind of upset stomach, so I've been avoiding it too. Switched to either almond or soy milk & avoiding large amounts of dairy. I have been pretty good besides those things. I've had some gas & gas pains to go along with it but I've eaten more lettuce & greens in the last two weeks than probably my whole life. So I figure that's part of it.

Maybe I'm off base but pretty sure with all my past history & symptoms, plus my family's similar symptoms that I've got celiac.

Anyway, this is what the report said:

Test Name...........................In Range..............Out of Range........Reference Range............Lab

Celiac Disease Comprehensive Panel

Tissue Transglutaminase Ab IgA

....tTG AB, IgA.......................<3..........................................U/mL...................NI

.......Reference Range:

.......Negative: <5

.......Equivocal: 5-8

.......Positive: >8

Endomysial AB (IgA) w/RFX TITER

.Endomysial AB IgA.................See Below...................................NEGATIVE.................NI

...TNP-Reflex testing not required.

.Endomysial AB TITER...............See Below...................................Less than 1:5............NI

...TNP-Reflex testing not required.

IGA SERUM...........................180........................................81-463 mg/dL.............NI

Tissue Transglutaminase (IgG)

..TTG AB IGG......................See Below......................................U/mL...................NI

....Reference Range:

....Negative: <7

....Equivocal: 7-10

....Positive: >10

...TNP-Reflex testing not required.

(... used for proper spacing)

Any advice or information is appreciated.

[cassP]

well, those are pretty negative numbers. but ive read false negatives occur at around 20%

also- they didnt run any antigliadin antibodies.. not the old regular one or the newer Anti-Deamidated antigliadin antibodies.

?? i know you probably want validation.. but sometimes the biggest proof is in your response to the diet.

if you dont mind spending the money (altho not diagnostic)- you could always get a gene test- they can be interesting

[Looking for answers]

I can't comment much on testing, there's others on here that know a lot, so hopefully they'll chime in. However, if the gas pains continue, consider ditching the soy for a while and see if it helps. It affects me as bad as gluten or dairy. Just something else to try if the symptoms continue.

[Skylark]

The tests are all negative, so you are probably not celiac. Do remember that 20% of celiacs have negative blood tests so it's not a complete rule-out. People can get very sick from non-celiac gluten intolerance too, and there is no way to test for it other than response to the gluten-free diet. If wheat and dairy make you sick, by all means stop eating them!

[Laennie]

Thanks. I appreciate your guys' input. The funny thing is after I posted this I started not feeling very well & was starting to doubt if gluten was my problem. Then I realized that I cross contaminated myself by dipping in the mayo jar.

I'm paying very close attention to what I eat & how I feel afterwards. I'm hoping to be able to go back to dairy after a few months but I'll play it by ear. I appreciate the concern & heads up on the soy. So far the main days that I've still had a lot of gas or gas pains it's been on days when I have not drank soy. It seems to only be if I eat a lot of greens, spicey food or too much dairy. The only place I've eliminated dairy is my cereal & not eating icecream. I'm kind of playing it by ear but plan to stay gluten free until Christmas. I have the week after Christmas off work & it will be close to 3 months by then so I think during that time off I'm going to purposefully eat gluten & see what happens. From what I've read on here that seems to be a good way to test it yourself.

My mom & I both think I've fallen into the 20% category and for myself, I don't particularly care because I have the motivation to do the diet myself & see. I just wish that it would have come back positive so I could try to motivate my family members that have symptoms. My cousin, who we believe probably has it, said to me today, "Wow! You've got guts to keep doing the diet with a negative blood test". I told her that for me, I have enough motivation. I could never do a diet to lose weight because I don't care that much & I'm too picky of an eater. For this my motivation comes from being tired of feeling like crap, tired of being tired, tired of my stomach giving me so much grief, tired of being in pain, tired of feeling like my mind is in a fog most of the time, tired of falling & breaking my feet or legs. I fall more than any person we know. My biggest motivation in the past few months is that I'm hoping my fertility problems go away & I can give my son a little sibling to play with. If I can make all of that better just by eating differently, it's worth it to me & that's all the motivation I need.

I may look into the gene test later down the road to help try & convince them. It just breaks my heart that because it's not something that can be fixed with a pill or surgery they don't want to try it. My cousin has had 3 miscarriages in the past year & a half.

Anyway I know I'm rambling now so I'll shutup. Just once again I want to say thanks very much for your input. I have learned so much on this site & through these forums.

[chronicowie]

If it's any consolation, my symptoms were pretty much the same as yours and my blood test was negative too. Anyways, it's been 3ish weeks and I am noticing a huge improvement.

[Skylark]

Good luck! I really hope you feel better on the diet. I know what you mean by not needing a positive blood test, as I was never tested at all. My body rejects gluten. I'm OK with that.