Calling All Scientific Minds!

[Ox on the Roof]

Apparently I am just clueless about lab tests. I've tried and tried to understand all the ins and outs of IgA and IgG tests, but I am still confused. I do understand that Celiacs are more likely to be IgA deficient. Here are my questions:

1. If you are IgA deficient, will this mean that your IgA numbers will be very low? My labs from last year did not give me exact numbers; they just said that <10 was negative and that my results were <10. But here are my results from last month: Gliadin AB IgA, Deamidated - Value 1 - Reference Range <20 units. According to my doctor, Value 1 is my result. So <20 is negative and my result was 1. Does this mean that I am IgA deficient? If the answer is yes, this leads me to ask...

2. How does IgA deficiency affect test results? My IgG results from that same day was: Gliadin AB IgG, Deamidated - Value 2 - Reference Range <20 units. So again, according to the doctor, <20 is negative and my result was 2. Is this result accurate if I do have IgA deficiency?

I still think it's really weird that my result for test 1 was 1 and my result for test 2 is 2. It's almost like the lab people didn't fill out the form or something. But my doctor thinks it's accurate, so I am going with it. Of course, they didn't biopsy my intestine when they did the scope last year, and I am aware that the labs aren't perfect. And I am feeling better on the diet, so I'm sticking it out for at least a couple more months.

3. And one last question. According to everything I've been able to read, you have to DRINK something to have a lactose intolerance test. But the lab at my doctor's office just drew blood. That's it. When I questioned the tech, she just shook her head and said that's how it's done. Is this correct? (I haven't gotten these results back, although I don't need them...I KNOW I get sick if I drink milk.)

Thanks for all your help!

[mushroom]

I am not a scientific expert, nor even close to an expert on testing, but looking back at the test results you posted it does not appear that they ran a total serum IGA on you, which would determine whether or not you were IGA deficient. If you do not make normal quantities of antibodies (even non-intolerants make IGA antibodies), then all IGA tests are invalidated. However, they did do the IgG tests on you as well as the IGA, and these were also negative. I think you just have to accept, like so many of us, that there are no tests currently available to measure your gluten intolerance.

[cassP]

all your tests mean is that you are negative on the Antigliadin igg & iga. i was negative on both of those too. (**** i only had the regular antigliadin, not the newer Deamidated test)

you could be Iga deficient and be either negative or positive on those tests really... an Iga deficiency MAY lead to lower Iga numbers and therefore make your result inconclusive. theoretically, if you were Iga deficient- then your Iga numbers may be falsely low, but your Igg numbers could be accurate. ive also recently heard of an IGG deficiency too. anyways, to know if you are deficient- like Mushroom said- you'd have to get the Total Iga Serum test.

also, the antigliadin is only ONE of the antibodies to test for. you didnt get tested for Tissue Transglutamase? or Endomysial Antibodies? i was NEGATIVE on my Antigliadin, very WEAK POSITIVE on the TTG, and POSITIVE on the EMA. this can be so complicated a disease to pinpoint so it's a good idea to get all the tests.

i dont know anything about Lactose Intolerance testing... i wanna say i heard of a breath test after swallowing something... but idk.. i just rely on my body's signals with Lactose. i dont know if i have a negative reaction to Casein... but apparently my body does not digest most cheese.

good luck!!! if you go for the TTG & EMA test- you need to be eating enough gluten ... but the Iga serum, and genetic tests dont require any gluten eating.

[kayo]

A milk allergy and/or sensitivity to the milk protein casein would be diagnosed via bloodwork, but not lactose. For lactose testing you need to drink something and have a breath test.

The Iga/Igg stuff confuses me too so I can't help on that one

[Skylark]

If you are IgA deficient, your total IgA will be low. You have not told the group a total IgA. Did your doctor run one? I think I tried to explain your celiac tests once before to you and we figured out that the 1 and 2 are your real test results. They are not mistakes or typos, but simply negative results.

If your total IgA is low you will get false negatives on IgA celiac tests like anti-gliadin IgA and anti-TTG IgA.

I know it's frustrating to be sick and get negative results but it seems to happen a lot. I do wonder why your doctor didn't run a full celiac panel and only the outdated anti-gliadin. It's a shame you can't be tested for anti-TTG and anti-EMA without re-glutening yourself.

[lizard00]

I am IgA deficient. My GP ran my initial blood work, and said I was negative. They did at least run a total serum IgA, which is the only way to test for deficiency. But they didn't run the IgG tests, so, there was no blood work to confirm or not celiac. When I finally went to the GI he told me that my test results were worthless because of the IgA deficiency and lack of IgG testing.

I'm sure you could probably be IgG and IgA deficient, although I would imagine you would catch every virus and bug that came your way, as that would be a deficiency in two components of your immune system.

As for the lactose test, it is a drink. From what my GI told me, it's about the equivalent of a gallon of milk that you have to down in a short amount of time, and then breathe into a bag every so often to measure the gas levels as the lactose is being broken down. From what I hear, if you are lactose intolerant, is it absolutely miserable and my doc advised me not to do it. Turns out I'm not lactose intolerant, I think it was just a part of my healing process as I can tolerate dairy again.

[Ox on the Roof]

Wow, there are just SO MANY tests that I just can't keep them all straight! Originally, someone told me that the "deamidated" ones were newer and more sensitive, but now I'm understanding that they are "outdated"?

Okay, I've been tested twice. Here are the test results from November 2009:

Reticulin IgA Autoabs - Reference Range <1:10 - Result <1:10

Endomysial IgA Autoabs - Reference Range <1:10 - Result <1:10

Gliadin IgG Abs - Reference Range <10.0 - Result <10.0

Gliadin IgA Abs - Reference Range <5.0 - Result <5.0

And then the results from November 2010:

Gliadin AB IgA, Deamidated - Value 1 - Reference Range <20 units

Gliadin AB IgG, Deamidated - Value 2 - Reference Range <20 units

So the question was asked:

You have not told the group a total IgA. Did your doctor run one?

Unless one of the above is total IgA, then I guess not.

I do understand that all of these results are negative, even the "value 1" and "value 2" that I still think is weird...but again, I'll go with it. I guess what I am wondering is if the overall picture of the combination of these results means that I am probably NOT Celiac.

The really frustrating part is that I have been soooo sick for the past three days, even though I don't know how in the world I could be more careful. I feel like nothing I try makes anything better...even having my gallbladder removed, and paying out thousands and thousands of dollars to doctors who only want to put me on Xanax so I'll stop "swallowing air."

Sorry to be a downer. All I want this year is to get my life back. And so far, it's not looking good.

[mushroom]

None of the above tests, unfortunately, is a total serum IGA. This is a control test, to prove that you are in fact someone who makes antibodies. If your total serum IGA is low, then the results of the tests are affected and will likely be negative, at least for the IGA tests. The DGP is not outdated, it is the newest and most specific test for celiac. So you cannot at this point prove you are not celiac and it is going to be difficult now to prove you are.

But supposing you aren't?? Many gluten intolerant people (in fact maybe the majority??) are not. Just ask yourself if being a celiac is really going to make any difference to your life, versus being gluten intolerant. I know gluten intolerance doesn't have the same cachet as celiac disease, but it does the same work to our bodies and requires the same treatment. I guess I am just one of those who doesn't place much importance on a label unless it is going to change the course of one's life, such as being diagnosed dyslectic, which alters the way one is taught to read.

Much emphasis has been placed by the medical profession in the past about the importance of a diagnosis because they believed that if you "failed" their tests you did not have a problem with gluten. We have now found out that that is not so, and more and more research will be focused on those who "fail" the tests and still do not tolerate gluten. I think "celiac disease" will lose the distinction it currently has before long (MHO only) and will be replaced by something a little more all-encompassing, or added to with other names for the varying other forms of intolerance.

[Ox on the Roof]

Mushroom, thanks for the reply. I guess it's not so much that I need an official diagnosis, but that I am being very, very careful and I am still sick. So that leads me to believe that it might not be a gluten problem (Celiac OR just intolerance). I'll feel great for four or five days, then get sick again. So then I think maybe I am ingesting gluten, and I'll get even stricter with the diet (if that's even possible), and then here it comes again. Then I am tempted to give up altogether, except I've mentally committed to giving the diet a full three months. So again, I play detective with a bunch of "what if's" ("what if it's the counter top? or that time my daughter got a brownie crumb on my sleeve?") to the point of ridiculousness, and try to crack down even more.

It's just this frustrating cycle that doesn't seem to be getting me anywhere, and I fear that after three months I'll just be in the same boat again.

Thankfully, though, I am feeling a bit better tonight.

[mushroom]

You are still very new on the diet, Ox. Recovery isn't a straight line up, there are going to be ups and downs, mistakes and unknown cc's, and just plain days when your stomach doesn't like what you have given it because it is still healing and can't deal with everything yet. You must be patient and give it a chance to mend and relearn how to digest things properly.

We have been talking so much about tests and results that I have totally lost track of what, if anything, you are doing to help the healing process along. Can you refresh my memory?

[lizard00]

Recovery isn't a straight line up, there are going to be ups and downs, mistakes and unknown cc's, and just plain days when your stomach doesn't like what you have given it because it is still healing and can't deal with everything yet. You must be patient and give it a chance to mend and relearn how to digest things properly.

This is so wonderfully written! The first 6 months of my recovery I didn't know how I was going to feel in the morning, and I knew I was being super strict and not getting gluten. For a long time, nothing made me feel good. And some foods I knew were gluten free, but my body just didn't like them because I was still heaing.

Great words of wisdom shroomie!

[Ox on the Roof]

Thanks for the encouragement. It's just hard to keep focus when you feel sooo bad, ya know? This morning is still BLAH, and I guess I'll be skipping half of Communion to boot. Maybe next month I'll remember to get some gluten-free wafers.

I am not sure what I'm supposed to be doing to help the process? I've gotten rid of all gluten that I'm aware of. I've switched my family mostly to gluten-free, too (about all they have with gluten is cold breakfast cereal). I only cook and eat out of my metal and glass dishes that I know (assume) are safe. I switched to gluten-free soap for my face. I switched to lactose-free milk. I checked my multivitamins and am taking Vitamin D and B12 supplements.

I guess that's about it?

I also had a UTI this week and am on Cipro, which is supposed to be gluten-free. But maybe that could make me feel sick. It's not just the TONS of air in my stomach that makes me nauseated and belchy...it's also that dreadful feeling of shaking internally and slight dizziness (like I'm on some medication or something). I can't see an antibiotic doing that. It hasn't been this bad for a while (maybe four months, before my gallbladder surgery).

[Jestgar]

You may need to get yourself a convertible, or some other indulgence so you feel better even when you feel bad.

[frieze]

Thanks for the encouragement. It's just hard to keep focus when you feel sooo bad, ya know? This morning is still BLAH, and I guess I'll be skipping half of Communion to boot. Maybe next month I'll remember to get some gluten-free wafers.

I am not sure what I'm supposed to be doing to help the process? I've gotten rid of all gluten that I'm aware of. I've switched my family mostly to gluten-free, too (about all they have with gluten is cold breakfast cereal). I only cook and eat out of my metal and glass dishes that I know (assume) are safe. I switched to gluten-free soap for my face. I switched to lactose-free milk. I checked my multivitamins and am taking Vitamin D and B12 supplements.

I guess that's about it?

I also had a UTI this week and am on Cipro, which is supposed to be gluten-free. But maybe that could make me feel sick. It's not just the TONS of air in my stomach that makes me nauseated and belchy...it's also that dreadful feeling of shaking internally and slight dizziness (like I'm on some medication or something). I can't see an antibiotic doing that. It hasn't been this bad for a while (maybe four months, before my gallbladder surgery).

YES, some antibiotics can make certain person feel that way! especially that class.if you need ABT in the future ask if there are any in a different class that the "bug" is suseptable to. Good luck

[Skylark]

Wow, there are just SO MANY tests that I just can't keep them all straight! Originally, someone told me that the "deamidated" ones were newer and more sensitive, but now I'm understanding that they are "outdated"?

Okay, I've been tested twice. Here are the test results from November 2009:

And then the results from November 2010:

So the question was asked:

Unless one of the above is total IgA, then I guess not.

I do understand that all of these results are negative, even the "value 1" and "value 2" that I still think is weird...but again, I'll go with it. I guess what I am wondering is if the overall picture of the combination of these results means that I am probably NOT Celiac.

The really frustrating part is that I have been soooo sick for the past three days, even though I don't know how in the world I could be more careful. I feel like nothing I try makes anything better...even having my gallbladder removed, and paying out thousands and thousands of dollars to doctors who only want to put me on Xanax so I'll stop "swallowing air."

Sorry to be a downer. All I want this year is to get my life back. And so far, it's not looking good.

You are not celiac by blood panel - you've had enough negative IgG tests that would show celiac even if you were IgA deficient. The deamidated tests are new and somewhat more sensitive than the older tests. It does not mean that you are not seriously sensitive to gluten. Stick to the diet and give it a little more time. Also try eliminating soy and dairy and see if it helps somewhat. I know it's hard but a lot of us have cross-sensitivities. Also pay attention when you eat nuts, corn, fish, shellfish, and other foods that tend to trigger allergies.

Oh, and Cipro makes me horribly ill. I do anything I can to avoid going on antibiotics for a UTI.

[mushroom]

Yeah, Cipro is one of the biggies for me too - it really does a number You might try some gluten free probiotics to help replace all the good flora in your gut that is also being killed off by the Cipro - it is not very selective in what it knocks out. In fact probiotics as a consistent daily habit could help you immensely. Your digestive system at this stage sounds like it needs a bit of help, and this might make a difference. It's worth a try; I certainly took them for a long time, along with digestive enzymes because it seemed like I wasn't making enough of my own.

[txplowgirl]

It wasn't until 7 months in that I finally started having better days than worse ones, also Cipro made me a lot sicker, it wasn't until someone suggested Aloe Vera juice that I started feeling better.

[cassP]

I am IgA deficient. My GP ran my initial blood work, and said I was negative. They did at least run a total serum IgA, which is the only way to test for deficiency. But they didn't run the IgG tests, so, there was no blood work to confirm or not celiac. When I finally went to the GI he told me that my test results were worthless because of the IgA deficiency and lack of IgG testing.

I'm sure you could probably be IgG and IgA deficient, although I would imagine you would catch every virus and bug that came your way, as that would be a deficiency in two components of your immune system.

As for the lactose test, it is a drink. From what my GI told me, it's about the equivalent of a gallon of milk that you have to down in a short amount of time, and then breathe into a bag every so often to measure the gas levels as the lactose is being broken down. From what I hear, if you are lactose intolerant, is it absolutely miserable and my doc advised me not to do it. Turns out I'm not lactose intolerant, I think it was just a part of my healing process as I can tolerate dairy again.

OMG ! a GALLON of milk????? that much??? i can handle small amounts of milk- but a GALLON- i dont think you would need a breath test with a gallon- im pretty sure the "D" would be imminent

[Ox on the Roof]

Jestgar - NOW you're talkin'!!!

Hmmm...maybe it's the Cipro! I was a little sick on Tuesday night and Wednesday I woke up with the UTI. I started the Cipro Wednesday evening and have been sick since. It would be great if that's all it is. So now I have to decide if I take the Cipro tonight or not. <scratches head>

The doctor's office called me on Friday to let me know that they needed to send me for a lactose intolerance tests. Which means that I was right about having to drink something first. Which means they poked me for nothing, I guess.

If it really is a gallon of milk, it's gonna be BAAAAD! Reminds me of the Julian Smith video with the guy drinking the gallon of milk so he'd be able to throw up for the comedy sketch. (It's actually very funny, if you like Julian Smith...his humor is odd, but clean...)

[mushroom]

Did they test your specimen for specificity to Cipro? If not, you might ask if you can take Norfloxacin instead? I find it much easier on the stomach. You must finish a course of treatment to get rid of the UTI.

[Skylark]

Did they test your specimen for specificity to Cipro? If not, you might ask if you can take Norfloxacin instead? I find it much easier on the stomach. You must finish a course of treatment to get rid of the UTI.

Maybe. Last time I had a UTI I reacted to the Bactrim that used to work so well for me for the first time ever. I only took one pill and my Dr. advised me to come in the next day for Cipro. I was so much better the next morning after the one dose of Bactrim that my Dr. and I decided for me to try cranberry juice and vitamin C (take a gram at bedtime so it goes through and sits in your bladder) to see if I could kill off the rest of the infection. It worked fine.

I can also kill off a UTI with Uva Ursi if I catch it early enough. Antibiotics sometimes don't work as well for me as the various urinary antiseptics.

[mushroom]

I take cranberry tablets in addition to the antibiotic. It's interesting that the only time now that I get a UTI is when I have been given antibiotics for something else (I have to take amoxycillin for dental procedures), then I get the UTI and have to take more antibiotics because they just don't go away without them, or at least don't get under control - I don't think they ever go away. It's like my body can control the bacteria until the antibiotics kill off the controls. UTI's were a side effect of gluten for me.