My Blood Tests

[JerryK]

Ok, I got some blood work back from Kaiser.

They tested me for Tissue TG IgA Ab

I scored 2 U/ml: < 20 U/mL is considered Negative

20-30 U/mL Equivocal

> 30 U/mL Positive

Now I expected the tests to be inconclusive...but testing this low surprises me. I'm left to consider the fact that although I appear to be gluten sensitive, I do not appear to be truly Celiac(which is OK by me). You can speculate all day about whether or not you think Kaiser knows what they are doing:)

Also, this makes me wonder if Enterolab, based upon the questionnaire you fill out, simply sells you a diagnosis they think you're looking for.... I guess there's no real way to know that for sure, and like someone said earlier, what do they have to gain by doing that? I'm sort of suspicious by nature, please don't flame me...

The only fly in the ointment will be if my gene tests come back indicating I have one or more Celiac genes, then I won't know what to think. Also, I believe that Enterolab sends out their DNA samples to another lab that actually performs the test....so I can't point the finger at Enterolab if the DNA comes back positive.

The other possibility is I tested so low, because I'm simply not able to keep any gluten in my system long enough to evoke an immune response. It blasts out of me like I'm a Saturn IV rocket. That and being gluten light for months, could cause a low test...I guess.

Soooo, I'm left with that same empty feeling I get when I eat a lot of bread:) At this point I'd appreciate any advice.

Jerry

[rez]

I think you have genuine concerns regarding Enterolab and remember that even if you do have the Celiac gene, so does thirty percent of the population. Only 1% actually get Celiac. I personally feel that a gluten free diet is an awesome healthy way to eat and live. I think most, if not all, people would feel better gluten free. Good luck in the future with everything.

[celiacgirls]

You know you feel better when you don't eat gluten so obviously you need to avoid it.

Enterolab believes their test catches it before it is bad enough to show up in a blood test. To me, it seems that this must be the case. I know there are skeptics about Enterolab but to me it makes sense.

My own daughter tested negative on the blood tests (very low, just like you) but clearly has a problem with gluten. I have a celiac gene and so does her dad so I'm guessing she does, too, but I don't know for sure. At this point, it would just be curiosity that would make me check her genes and it doesn't seem worth the $149.

My husband also tested positive with Enterolab and has a celiac gene. He says he doesn't have any GI symptoms although since I'm the one who sent off his sample, I might disagree. He also has a rash that is suspicious of DH. His blood work was very low and clearly negative also. He's also been dx'ed with Graves disease which is an autoimmune thyroid problem with a link to celiac. I think he should avoid all gluten and he is trying the diet but he isn't as strict as I am and he doesn't see any obvious benefits. I'm concerned that he is just going to develop other problems that can be avoided if he goes gluten-free.

I think you should be thankful you know gluten is a problem for you and you have a clear benefit from avoiding it.

Even if Enterolab is a total scam (which I don't think), it seems they got it right in your case since you know you feel better without gluten.

[happygirl]

Jerry:

You could be IgA deficient, which if you have Celiac, could cause problems with testing.

You can still be non-Celiac gluten sensitive, which as you know, will never show up on a Celiac tTG test.

Laura

[jayhawkmom]

I personally feel that a gluten free diet is an awesome healthy way to eat and live. I think most, if not all, people would feel better gluten free. Good luck in the future with everything.

I agree with Rez on this one!!! =)

Jerry - I've been following your posts over the past few days and I can't even imagine how frustrated you must be feeling.

I honestly never realized I had ANY type of an issue with gluten until my daughter's blood tests came back "inconclusive" and we decided to try the gluten free lifestyle. I felt a MILLION times better, but didn't realize that I'd felt poorly to begin with!! Then when I realized that perhaps MY blood tests weren't telling a true enough story, I decided that I should feel free to eat gluten as I wished. However... after being "glutenfree" for a short while, my reactions started becoming more and more obvious, more rapid, and more violent.

(when I say inconclusive, I mean IgG antibodies 7times the norm, and all other parts of the test the top number of the "normal" range.)

Perhaps the fact that you have been limiting gluten did have an impact on your results. But, you know you can't eat it....so, don't.

[JerryK]

Some things I've learned at the wise old age of 46....

-Listen to your body. Don't take medications that make you feel WORSE( believe me this happens).

-Blood testing doesn't diagnose anything unless you are half dead.

-Medical science wants you believe they have all the answers, and most of them are in a pill.

-The best creamer for your coffee is Mylanta.

[jerseyangel]

Gosh Jerry,

I don't really know what to say here...I never had any blood testing, my doctor immediately set me up for the endo/biopsy. He diagnosed me on that and a positive response to the diet.

I did think that the full Celiac panel needed to be run--not just the one test. My mom's doctor did the same thing (ran just one test), and although I would be willing to bet that she has Celiac, her test was also negative and she's going with it.

Also, just my unscientific opinion (observation?) from reading on this board for a while--your going on and off gluten in the past few months could have skewed the results. I see time and time again where people get back on gluten for a test after trying the diet and getting a negative result when they clearly feel better on the gluten-free diet.

I guess your gene test will give you a little more insight.

It would be so much easier if these things could be more black and white. I know how frustrated you must be right about now--at the very least, you have found out that (for whatever reason) gluten does not agree with you. That's something, anyway

[gfp]

Just to put you at rest on the enterolab ... they do give negatives and people from here have had them....

To get restested or not...?

Really that depends how good you feel on a gluten-free diet.... you gotta weigh up if you want to keep going at that's your choice...

The lab coulda messed up... it happens ... but in oirder to get a valis antobody test your going to have to eat gluten again...

If you go with the tests and restart then perhaps finances permitting you could do another to make doubly sure. If not then thats equally up to you... either way I hope you find your answers and feel better.

[JerryK]

I want to thank everyone for your help, support and advice. At this point I will assume I am

Gluten Sensitive, but non-Celiac. Meaning, wheat makes me sick but it's probably not actually

causing me damage( at least currently).

I don't know where I go from here but I will update you when I get my Enterolab DNA tests back...

[jerseyangel]

Sound like a good plan

Be sure to keep us posted!

[lonewolf]

I totally understand your surprise and frustration. Two of my children and I are definitely gluten sensitive, but all the traditional tests showed negative. (Of course, I can't figure out why my doctor even ordered testing for me when I'd been wheat-free for almost 10 years and had barely eaten gluten that whole time.) Anyway, my doctor was curious and ordered gene testing for me, which came back negative for DQ2 and DQ8. It was surprising and frustrating to have the gene testing show that I can't have Celiac when I've had so many symptoms (dental enamel defects, IBS, autoimmune thyroid problems, etc.) But it hasn't changed my mind, as I'm sure this negative blood test won't change yours - it's just frustrating.

My son even tested negative through Enterolab, but has had huge improvements on the diet. At 11 it was hard for him to buy into gluten-free when all the testing showed negative, but now he realizes that he feels better, so he's on board. My 15 yo daughter went gluten-free on her own, after doing her own gluten challenge. She'd rather avoid problems than try to fix them down the road. Even at 15, she KNOWS that gluten bothers her despite what a blood test says.

Someday they might have tests that pick up on non-Celiac gluten sensitivity. I think that Celiac Disease is just one of many manifestations of gluten sensitivity - it's just the only one they have figured out testing for. For now, you just have to listen to what your body is telling you.

[chocolatelover]

Jerry, I swear you and I are kindrid spirits!

My blood work also came back ridiculously low (but am not sure they ran the entire panel, and not sure the Quest knows what they're doing when it comes to celiac.), yet I know that I am at the very least gluten sensitive. I keep going on and off gluten (off when I feel like I don't care what the blood tests show and on when I think, does it really matter anyway?). I don't suppose I've been off of it long enough for any true healing to occur. All I know is that I usually get sick as a dog when I eat gluten. I STILL don't have the results of my biopsy (yes, it was 12 days ago, and yes, I called them yesterday and haven't heard back from them yet, and yes, I think I need to switch to another GI).

My point is I feel your pain--it's that grey area between knowing for sure you have it, and knowing for sure you don't--where do we fall in? We don't have any clear answers, nor do we have medical support for what we think is happening to our bodies. The frustration and dare I say it--disappointment--of not having celiac. It's not that I WANT to have celiac disease, it's that I want an answer, I want direction on what to do from here, and I want to be able to explain to everyone around me that I have a disease, not just wierd thoughts in my head that I am gluten sensitive. Does this make any sense to anyone?

I still think the gene testing can be helpful--at least if you come up with not having the gene, perhaps you need to look elsewhere for the causes of your problems. I am fully prepared to do that as well.

Hang in there, buddy. We're here for ya.

CL

[jayhawkmom]

and not sure the Quest knows what they're doing when it comes to celiac.),

Like any lab... they'll only run the tests that are ordered.

That being said... my daughter and I both had "inconclusive" results through Quest. My older son just had positive blood work through them. I think THEY know what they are doing, but if you get a doctor who doesn't know what tests to run, Quest won't add or subtract them based on the orders.

[Cruiser Bob]

My whole family has been tested many times (3 generations). Iga/Ige on me - negative, DNA - negative. Dad - biopsy - possitive, kids, gluten-free diet - no more health issues, me - pure hell, then a gluten-free diet and things are better - not 100%, but much better. Ige/Iga test #2 is in process - we'll see what happens.

Bob

gluten-free-1999

[Rachel--24]

Jerry,

I wouldnt worry too much about Kaiser as far as the results go. They arent the ones actually performing the labwork. They should have ordered more than tTG though.

As Laura stated, you could be IgA deficient. You dont know because the test wasnt ordered. It is still possible that you could have Celiac....and its just as possible that you dont have it.

Either way....from what I've read from your previous posts....being of gluten definately makes you feel better. I would say that you are obviously intolerant to gluten.

Also, this makes me wonder if Enterolab, based upon the questionnaire you fill out, simply sells you a diagnosis they think you're looking for.... I guess there's no real way to know that for sure, and like someone said earlier, what do they have to gain by doing that? I'm sort of suspicious by nature, please don't flame me...

I honestly dont believe this is the case. I believe that the stool test DOES detect anti-gliadin antibodies. I dont think Dr. Fine is just "picking" who has them and who doesnt.

They are there....but it doesnt mean they are there because of Celiac. It also doesnt mean if those antibodies are found and you eliminate gluten....all of your troubles will disappear.

I wouldnt exactly call Dr. Fines test a "diagnosis" of anything.....except maybe leaky gut. I do not believe that he's fabricated the testing though. The antibodies are real but we just cant be clear as to exactly what this means.

For example...Enterolab founds that I have elevated tTG. Well...we know that tTG is specific for Celiac....which I do not have. Based on genetics, bloodwork, biopsy and MOST important dietary response....I do NOT have Celiac.

So what is the elevated tTG from?? And what was my very high malabsorption from??

All I know is that it wasnt from gluten. I DO have candida overgrowth and leaky gut. I think that is where the positive tTG comes from as well as the leaky gut and resulting malabsorption.

When Candida adheres itself to the intestinal wall it is also targeted by tissue transglutinamse (tTG).

[Rachel--24]

Enterolab believes their test catches it before it is bad enough to show up in a blood test.

I hate to say it but if they were "catching it early" in my case....I do not want to think about where I'd be if I waited for it to show up in blood.

I think I was pretty much dying when Enterolab "diagnosed" me. I never tested positive in blood....I do not think I EVER would have tested positive in blood....because I am not genetically susceptible to Celiac Disease.

[JerryK]

My mom's solution: Just eat more fiber honey

I await the results of my gene tests with interest...

Oh, did I mention that I'm leaving for my Mexico cruise in 3 days:)

[ianm]

My doctor said that if the diet is working then that is all you really need to know. She advised against any official testing because I would now have a pre-existing condition. This would make it difficult if not impossible to get any insurance in the future.

[JerryK]

I hate to say it but if they were "catching it early" in my case....I do not want to think about where I'd be if I waited for it to show up in blood.

I think I was pretty much dying when Enterolab "diagnosed" me. I never tested positive in blood....I do not think I EVER would have tested positive in blood....because I am not genetically susceptible to Celiac Disease.

So do you count yourself Gluten Intolerant, non-Celiac? Plus I gather from some of your posts

you are or were Lactose Intolerant also?

[CarlaB]

Jerry, I was tested by Enterolab and was positive. One of my daughters was negative.

I think your dietary response tells it all ... I consider myself non-celiac gluten intolerant. No signs of celiac here, not even the genes, but I'll have a reaction to a very small amount of gluten.

[JerryK]

Jerry, I was tested by Enterolab and was positive. One of my daughters was negative.

I think your dietary response tells it all ... I consider myself non-celiac gluten intolerant. No signs of celiac here, not even the genes, but I'll have a reaction to a very small amount of gluten.

I am starting to realize that lactose intolerance is part of my symptoms also...

[CarlaB]

I am starting to realize that lactose intolerance is part of my symptoms also...

Bummer. Enterolab told me I was casein intolerant, I went off it for six months, felt no difference, challenged it, and realize it doesn't bother me AT ALL!!

You might want to test to see if it's casein or lactose ... if it's lactose, lactaid should help, but if it's casein, lactaid won't help.

Seeing that there are questions as to whether you have celiac or gluten intolerance (because you didn't get the whole panel with total IgA to see if you're Iga deficient), the lactose intolerance may get better as your intestines heal ... IF they're damaged.

[mellajane]

I had been sick since the age of 7 and am now 30. All my test have came back negative. I have not ever had the gene test done. Although I am now wheat and gluten free for three years and never felt better.Dr.s really have no clue... Its like I have been poisined my whole life and very misdiagnosed.To think all this time it was wheat that I have been sick to is sad,but gloryifing...

[Rachel--24]

So do you count yourself Gluten Intolerant, non-Celiac? Plus I gather from some of your posts

you are or were Lactose Intolerant also?

Yup...I consider myself to be gluten intolerant (Non-Celiac).

I really dont believe I would have ever developed this problem had it not been for the underlying issues.

Lactose intolerant??

If only it were that simple for me....

Actually...I've got one heck of a leaky gut thanks to candida.

At this point you can count the foods I eat (semi-safely) on one hand.

Lactose intolerance is *not* a problem that I have.....amazingly some things do still work.

I dont have Celiac.....my villi are standing tall and proud

The enzymes for lactose digestion would be at the tips of the villi...I've never had lactose intolerance.

[AllysonBrightMeyer]

I don't know anything about Enterolab, so I can't help you there.

My blood test (done by my general family doctor) was negative. I asked to see a specialist anyway. No one else in my family has celiac. I read about it online and the symptoms sounded familiar, so I pushed the issue. Specialist did the endoscopy, biopsy was positive.

On blood tests.....I know "of" 4 people with celiac in my life - my friend's mother, my mother's co-worker, my mother's friend from church, and me. I believe we all had negative blood tests (can't remember if she asked her co-worker on that or not). So in my mind, it's all about the endoscopy.