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Confused By Test Results


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#1 simply

 
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Posted 19 February 2004 - 02:52 PM

I'm thinking that at this point, it doesn't look like I have
celiac. My test results that I have so far are as follows:

Gliadin IGA Antibody: Negative (12.6 --- Negative is anything under
20 - Two weeks off gluten at the time)

Gliadin IGG Antibody: Weak Positive (29 --- Weak Positive is between
20 and 30 - Two weeks off gluten at the time).

Antiendomysial Antibody (EMA): Negative (was not able to get an
exact value even though I asked for it - After five weeks of LOTS of gluten, every day.)

Antitransglutaminase (tTG): I don't have this one yet, but based on
what I've read, if the EMA is negative, the tTG will probably be
negative as well. - After five weeks of LOTS of gluten, every day.

I would think that maybe I have IGA deficiency, except that I
obviously have some IGA...I'm in the middle of the normal range for the IGA Gliadin test.

I don't know what to think about all this. On the one hand, I'm
happy because I really like bread and it looks like I can keep
eating it. However, my having Celiac explained so much. I was
thinking that if this was the root cause to all my gastro-intestinal
problems, maybe I could give up gluten and then get some energy
back. Maybe I could stop having diarrhea and floating stools. Maybe
I could actually get my HDL cholesterol up (the good kind.)

Now, it seems like I'm back at square one, with no bloody clue as to
what's wrong. After 13 years of Chronic diarrhea, I'm just a little
tired. And with my moving in four weeks, it's not like I have a lot
of time to do all the sleuthing with the doctors that I have now.
I'll have to go DC, get a whole new slew of doctors, and on and on.

So, do I have to be on gluten for an accurate Total IgA test?

This is incredibly frustrating. Any insights will be greatly appreciated.

Simply.

P.S. I thought I posted a similar thing...however, I think I messed it up. Anyway, it's not showing up. If I did, you can ignore this.
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#2 gf4life

 
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Posted 19 February 2004 - 03:05 PM

Hi Simply,

No you do not have to be on gluten to have your total IgA tested. And it is possible to have a weak positive and still be IgA deficient. Although after two weeks off gluten those first tests for Gliadin are not accurate. You have to have been on gluten for them to show anything, even then you never know. I tested negative on all the bloodtests and the biopsy, yet I am still gluten intolerant. Some people never develop enough antibodies to cross over into their blood, yet they do have the antibodies present in their intestines (where the damage is being done) and in their stool. Have you considered testing through Enterolab ? They have very sensitive tests and can detect gluten intolerance in many people who are obviously reacting to gluten, yet have tested negative on the inaccurate, yet highly accepted (by conventional medical practice) blood tests.

I can't tell you if you are gluten intolerant or not, but it sure sounds like it. I wish you luck in getting a diagnosis, and have a wonderful move.

God bless,
Mariann :)

Diagnosed by Enterolab Nov. 10, 2003 after testing negative on the Celiac Panel, and 25+ years of symptoms.
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#3 simply

 
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Posted 19 February 2004 - 03:55 PM

I have some questions about enterolab.

First, I read through some of the information Dr. Fine provided on the site, and it seems to make sense. However, since I am about to be an attorney (if I can get my brain working long enough to pass the bar) and am not anywhere close to being a doctor, I know I don't have the expertise to determine whether he is a quack. What he's written sounds good, seems logical, but he could just write well.

Second, how does the Enterolab process actually work? I've collected stool samples (all last semester, so my doctor could figure out my Diarrhea)...does Enterolab send the container, and then you send it back? How do they keep all the little cells that they will look at alive during the shipping process? Or do I actually need to get myself there so that I can collect the stool using their toilet, then hand it off to them?

Third...I think the tissue transglutimase that was ordered was of the IgG variety. I'm thinking that even with a negative EMA, the tissue one may be positive even if I'm one of the lucky few with selective IgA deficiency.

Thanks for all your help!!!

Simply
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#4 gf4life

 
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Posted 19 February 2004 - 05:20 PM

I know that the tTg test should be done on IgA, unless you are IgA deficient, since the IgG is not as specific and won't pick up Celiac Disease as easy.

I felt the same way as you about Enterolab at first. I was of course skeptical. But he has been mentioned in some very reliable publications on Gluten Intolerance. To name a few:

Wheat Free, Worry Free by Danna Korn - (the tests are mentioned)

Dangerous Grains by James Braly and Ron Hoggan - (mentions Dr. Fine as a world class researcher in the area of genetic research in Celiac Disease)

Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States: A Large Multicenter Study by Alessio Fasano; Irene Berti; Tania Gerarduzzi; Tarcisio Not; Richard B. Colletti; Sandro Drago; Yoram Elitsur; Peter H. R. Green; Stefano Guandalini; Ivor D. Hill; Michelle Pietzak; Alessandro Ventura; Mary Thorpe; Debbie Kryszak; Fabiola Fornaroli; Steven S. Wasserman; Joseph A. Murray; Karoly Horvath
Arch Intern Med. 2003;163:286-292. (From the Feb. 10, 2003 publication of the Journal of the American Medical Association) - Thanks Dr. Fine in the credits for his valuable contributions to the study.

I spent many months researching Enterolab and Dr. Fine before I felt confident that he was legitimate. I waited to do the tests until the doctors would not test me anymore and I was still testing negative. The Enterolab tests are fairly new, but the research behind them is not. Here is a link to a posting regarding Dr. Fine in which he talks about the history behind his testing procedures.

As for the actual testing, they send you a test kit in the mail with detailed instructions. The stool is collected using the kit (a container inside of a plastic toilet ring) and then the lid is placed on the container and the container is sealed completely with packing tape to make sure the lid doesn't come off during shipping. Then the specimen is frozen, overnight or longer, and the package is shipped using overnight delivery (mine was Airborne Express) and can only be shipped on Monday, Tuesday or Wednesday, so the lab has time to start the tests before the weekend. Dr. Fine's reasoning is that if the antibodies can withstand the intense conditions inside the intestines, they will be fine during this shipping procedure. If something goes wrong during the shipment, they will send you another kit. But usually everything is fine.

As for the gene test, the swabs are rubbed on the inside of your cheeks and then you let them dry and place them in the envelope provided and put them in the package with the container of stool. The box you recieved becomes your return mailer, with the express "lab specimen" plastic envelope.

Enterolab has helped many people to know that they really do need the gluten free diet. I personally think they are the most accurate tests currently available. I have heard of far too many people who have been failed by the blood tests and biopsy.
But the decision to test with them has to be your own.

God bless,
Mariann
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Mariann, gluten intolerant and mother of 3 gluten intolerant children

#5 gf4life

 
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Posted 19 February 2004 - 06:32 PM

Also, Dr. Fine is a guest speaker at many celiac disease support groups. If you go to the Celiac.com Forum home page, and look at the calendar events, he is listed half a dozen times for speaking engagements across the US in the next 3 months. Just thought I'd mention it. :D

Mariann :)
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#6 simply

 
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Posted 19 February 2004 - 06:42 PM

gf4life,

Since the way he tests is still so new, will mainstream doctors accept the diagnosis?

Like most people on this board, this is not my only medical problem. I'm positive that sometime in my future, I'm going to have to go on yet another drug, and there is a strong possibility that the drug will not be gluten free.

If I tell a doctor that I have to be gluten free based on one of these tests, will he buy it? Will pharmacies buy it?

I'm asking all the questions because $400 is a lot of money (at least to me right now, I'm of course hoping that in the future it won't be, but c'est la vie). I want to know all the ins and outs before I commit to it.

Thanks for all your help in answering these questions...it's nice that those who have gone before are willing to spend all the time helping those that follow.

Simply
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#7 gf4life

 
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Posted 19 February 2004 - 07:10 PM

Hi Simply,

No, not very many doctors will support the diagnosis from the Enterolab tests. I am concerned about my future health care as well, but I had no choice in the matter. I am hoping that in the future they will accept the tests.

I may have to get the tests done for my children, but I am also concerned for them. I mean, how are we going to get a doctor to only prescribe gluten-free medications, what if we are hospitalized and need gluten-free meals, etc. I don't have the answers to that, other than there are lists of gluten-free medications and just try your hardest to get the ones on that list should you need some. Also, if you are hospitalized and they give you gluten, you will probably get pretty darn sick, so it shouldn't be hard to convince them it was the meal. So I guess what I am trying to say is that the system is all messed up and we just have to do what is best for us.

I know what you mean about the cost. I am looking at $400 X 3 for my kids testing. But that is opposed to the $1600+($over 2000 if I don't put it on a credit card up front) testing through Prometheus labs for the blood and gene tests. They are the most credible and highest respected lab for testing for celiac disease, and of course my insurance will not cover the cost. So I am looking at out of pocket expenses here of over $1000 minimum and I just don't have that kind of money. I hate to put more on my credit card, knowing I won't be able to pay it off anytime soon, but I guess I might just have to do that. I need to know for sure before I put my kids on that restrictive of a diet. I want to know that they really need it.

God bless,
Mariann
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Mariann, gluten intolerant and mother of 3 gluten intolerant children

#8 gf4life

 
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Posted 19 February 2004 - 07:14 PM

Simply,

This might come in handy. They have the most comprehensive list of gluten-free medications and supplements.

http://www.glutenfreedrugs.com

Mariann
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Mariann, gluten intolerant and mother of 3 gluten intolerant children

#9 oreyes

 
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Posted 19 February 2004 - 07:46 PM

Mariann,
Thanks so much for posting the site for the gluten-free drugs. I'd never seen a list and wasn't sure where to find it. There was so much information on that site and the others that linked to it. I was diagnosed three years ago after seven miserable years but this site has made me so much more aware of others problems.
Thanks again for the information...............Judy
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#10 simply

 
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Posted 19 February 2004 - 08:04 PM

I was just reading some of the FAQ's, here on Celiac.com.

One of the FAQs said something that totally contradicts everything I've been reading today.

Here it is:


One case I know of had elevated gliadins (both types) but normal EMA and ARA, plus an inconclusive biopsy. Do you see this often?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: If the tests are performed using well standardized tests with known positive and negative predictive values then you can make the statement that if the serological tests are negative celiac disease can virtually be ruled out. The problem is that some of these assays, especially the gliadin, can give you false positive results. In our laboratory we rarely see positive AGA results in the absence of EMA and ARA antibodies.


Is this true? I thought that if the EMA and transglutamaise (sp?) tests were positive, you can be 100% certain that you have celiac and that the damage to your small intestine is fairly advanced. However, if they are negative. you may have celiac, you may be gluten intolerant, you may have nothing...it would be hard to say.

Am I right about this?

Thanks,

Simply.
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#11 gf4life

 
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Posted 19 February 2004 - 08:19 PM

Most doctor still believe the blood tests are accurate. There are just too many variables. First, dietary. If you are not eating a high gluten diet before the tests are taken, then they aren't very reliable. Second, human error. Either on the part of the lab tech performing the test (most labs are not very knowledgable or skilled at performing these delicate tests) or on the part of the doctor who interprets the results. They get a bunch of numbers from the tests and they have to make sense of it to come up with the numbers you actually recieve on the test results. If the doctor interpreting the results doen't know what they are doing (again, most lab doctors are not trained in the highly specified field of celiac disease blood tests) then they may interpret the results inaccurately. There are only 2 or 3 labs in the country that are skilled at Celiac Blood Testing. Prometheus labs, The Mayo clinic and one other I think, but I can't recall the name of it. Most insurance plans do not cover these labs and so the tests are done by your run of the mill lab that doesn't really know what they are doing.

Take the tTg test for example. Most people don't realise that the only accurate tTg test has to be the anti-human tissue transglutaminase test, but most labs don't use human tissue transglutaminase, they use animal tissue transglutaminase, usually from pigs and that makes the test not as accurate for detecting Celiac Disease.

If the tests are performed using well standardized tests...


That "if" is a big one. But most doctors will argue with you about this. My GI doctor doesn't believe me, even when I bring in documentation from reliable sources (which she asked for, but didn't bother to read!). The information about the tTg testing I got from my children's pediatric GI, who unfortunately is tied into a medical field that has basically tied his hands behind his back and he can't really help us. He is the most knowledgable doctor I have ever met personally regarding the issue of celiac disease, and he only trusts Prometheus labs for Celiac Testing. In his opinion all the other labs shouldn't even bother with the testing, because in most cases they are going to get it wrong.

God bless,
Mariann
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Mariann, gluten intolerant and mother of 3 gluten intolerant children

#12 simply

 
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Posted 20 February 2004 - 02:36 PM

Yesterday, I spent a lot of time reading through what the various tests meant, Entrolab, etc.

Is it possible to test positive on the EMA and tissue transglutamaise without having blood in the stool? It seems like most of the anti-bodies are actually in the small intestine, a place were I have no blood (at least according to all the stool tests performed last semeter). So I'm curious how the anti-bodies get to the blood from the small intestine if the small intestine has no blood. Any help will be greatly appreciated.

Just curious.

Simply

P.S. Note to gf4life...I'm very happy that your husband has OK'd the money for the tests. Hopefully, you can get some answers.
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#13 gf4life

 
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Posted 20 February 2004 - 04:34 PM

Thanks Simply,

In answer to your question about how the antibodies get from the intestines into the blood, have you ever heard of Leaky-gut syndrome? It is where there is damage to the intestines enough for the "bad" stuff that should be expelled with the waste leaks into the blood stream and causes a lot of health problems. This happens whenever anyone has any type of digestive disorder, but even more so when you have damage from gluten. Not everyone will produce enough damage or enough antibodies to "cross over" into the blood stream, so the blood tests will miss a lot of people who are gluten intolerant. Have you read the book "Wheat Free, Worry Free" by Danna Korn? It talks about all the tests, in detail and the pros and cons of all of the tests. I highly recommend this book. I have a newsletter from Gluten Solutions website that includes exerpts from her book and the chapter on the tests. If you would like, I can forward it to you, since it says to forward it to anyone who needs the information. Just let me know.

I hope this helps, I know it isn't very detailed, but I don't have all the information right at hand.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children




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