Test Results Intepretation

[bsiyatadshmayah]

Okay. I've been reading posts on testing for hours now. So, I'm wondering if someone might help me understand my results a bit more.

Brief History:

I've been low gluten for 5+ years. Not rigorous, but I feel better on low carbs, and so I don't honestly crave grains of any sort. I can't say I was always this odd, but I am now. I began a low carb diet initially due to a diagnosis of Candida Albicans overgrowth, and found that my allergies and asthma diminished. If I was rigorous enough, they even disappeared on this diet. My asthma has nearly killed me a couple of times, so this is significant for me.

Recently, my mother was diagnosed with celiac disease. I found out shortly afterwards that her sister was also diagnosed with celiac disease 10 years ago. Her other sister had hyperthyroidism a number of years ago, until the doc killed her thyroid with a radioactive pill. Now she lives on Synthroid. So, there is some autoimmune disease in the family. My father died of esophogeal cancer. There's lots of Irish and Scottish folks in our family's history. I hear the Irish are doomed, that's why I mention it. We're crazy too.

Anyway. directly as a result of my mother's diagnosis, I went on a 2 week, half hearted gluten challenge in order to have some blood tests done.

Reticulin abs - 1:40 - positive (they don't give a reference range)

EMA - negative - no numbers given

Gliadin ab, IgA 3.7 (<20 negative)

Gliadin ab, Igg <1 (<20 neg)

This was sent in to Mayo Medical Laboratories by my GP. He felt the results warranted a second round of tests and a more rigorous gluten containing diet. I requested a more complete panel, but he said I'd have to make an appointment with a GI for that. So, I did the exact same tests in the second rounds after 8 more weeks on a much more rigorous (and uncomfortable) gluten challenge. The results have confused me.

Reticulin abs - 1:20 - not clear if that is a positive or not

Everything else is exactly the same! How could that be?? One would think the numbers may have fluctuated a bit, even if not going into the positive range, especially the 3.7 number. I don't know much about medical testing, but that looked odd to me. Maybe someone here who is medically trained knows about this. Also, it is very odd to me that the Reticulin abs numbers actually went down, as my symptoms, some of which I haven't had for 5 years, when up dramatically.

I understand that Reticulin is no longer considered useful for diagnosing celiac disease, but it sheds light on the subject for me. From what I've learned, it is not sensitive (40% of those with celiac disease test negative on Reticulin abs) but it is very specific. I have read from some sources that it is considered 100% predictive of celiac disease. I think I may have read it in "Kids with Celiac Disease" but I can't honestly recall. I have also read that if the test does not specify whether this is Reticulin IgA or IgG, it is IgA. Mine didn't specify. I will be asking the GI more about this...it seems that the secret to correctly interpreting tests are closely guarded in the medical world, and possibly hold some legal liability.

I am scheduled to see the GI for the first time in a couple of days. In neither case was my Total IgA tested, so I will be certain to request that, as it seems to greatly effect the overall accuracy of these blood tests.

Thank you for taking the time to read this post.

b'siyata d'shmayah (with the help of Heaven)

[mftnchn]

Sorry I haven't read anything about the reticulin, that doesn't seem a usual test.

The others are negative. I notice a Ttg wasn't done either.

My impression also from what I have read is that it can take months rather than weeks on gluten for the damage to show up enough for positive tests. As well, as you know, a low total IgA may mean no positive tests even with significant damage.

[bsiyatadshmayah]

Sorry I haven't read anything about the reticulin, that doesn't seem a usual test.

First of all, thank you for your response. All the mystery and suspense causes me to need to communicate with others in similar situations about this. I'm sure everyone here can relate, otherwise none of us would be here in the first place.

Regarding Reticulin abs, yes it is considered an outdated component of most celiac disease panels. According to the chart on page 146 of "Kids With Celiac" by Danna Korn, ARA (an alias for Reticulin abs, according to Mayo Medical Laboratories site: Open Original Shared Link is 100% specific for celiac disease. I've read that at other sites, but since it is considered outdated due to it's lack of sensitivity (40% of folks with active celiac disease will not have positive ARA) it is not used much anymore. I guess my GP is using up some old lab kits or something. Of course, I'm only correct about the 100% specificity IF this test was Reticulin abs IgA, rather than Reticulin abs IgG. If it is IgG, then it's almost useless for me. I've deduced from hours of reading up on Reticulin abs that if it doesn't specify IgG, then it is IgA. I surely do hope that is correct.

The others are negative.

Yup.

I notice a Ttg wasn't done either.

Yes. I saw that when the results came in the first time around. After doing some reading, I did request a different panel that would include tTG but my GP said he couldn't order it. I had the second round done with the exact same panel for the sake of comparison. My GP has suggested I move on to a GI. I certainly hope this practice I'm going to has some docs who are up-to-date. I do have a list of questions which I lifted from "Kids With Celiac" that I will be asking in order to check up on them.

My impression also from what I have read is that it can take months rather than weeks on gluten for the damage to show up enough for positive tests. As well, as you know, a low total IgA may mean no positive tests even with significant damage.

Yes. I think I will be requesting a Total IgA as well. I sure hope they are helpful and not insulted if I know a bit about this. I'm not thrilled about a gluten challenge lasting for months. It's already ruined my summer. I haven't felt this miserable on a day-to-day basis for years.

I've been studying and studying this lab report, and have spent hours searching for answers about it, what it reflects, what the numbers mean etc. I will no doubt do the same with the second one when it is in my hands. I'm really REALLY wondering why or how the Reticulin abs could go down. I am gathering from my reading that it may still be in the positive range. Since this is the only component of the panel that is hinting at anything, that is the component where I am looking for answers from someone out there who may know more about it, until I get some more clues.

Another question: Does anyone out there have any experience with this "diagnostic" tool? The "SpectraVision BioBalancing Test." I put "diagnostic" in quotes because the homeopaths and N.D.'s in many states refuse outright to use the term diagnosis in conjunction with this tool. However, I found one practice that blends allopathic with other forms of health care in Georgia which names it as a diagnostic tool. In most states, health care practitioners would get slapped with some heavy fines and perhaps worse if they made any diagnostic claims. You should see the disclaimer page they make you sign in this state before proceeding. Some people, most notably M.D.'s, claim it is pure quackery, and others swear by it. My chiropractor has told me that it can be useful in pointing someone in the general direction, but that it can really be used to say whatever the technician (N.D., homeopath, chiropractor, nutritionist) wants it to say. So she cautioned against allowing anyone to use it if they have any information on the person being tested. Nothing, nada. Not nutritional, famililial, symptomatic. NOTHING.

Just wondering if anyone with experience as a "client" has any ideas as to how reliable these results from this thingamajiggie might be???

[fedora]

you absolutely need a total IGA level test done. This is run with even the most basic celiac tests usually. You can be a low producer of IGA or deficient. A tTg would be useful too....your dr. used some old tests.

[bsiyatadshmayah]

you absolutely need a total IGA level test done. This is run with even the most basic celiac tests usually. You can be a low producer of IGA or deficient. A tTg would be useful too....your dr. used some old tests.

Yes, I know...he did use some outdated tests. BUT, I'm actually grateful for the ARA, as that is the one that showed up positive. If that had been excluded because it's considered obsolete, I may have been overlooked. What I've read (pg 143 of "Kids With Celiac" by Danna Korn being just one example) is that the ARA is not sensitive, but it is very specific. Only folks with DH or celiac disease come up positive. In fact, it is considered 100% predictive of celiac disease when positive. I've just found out that on both my tests, ARA was positive. In the first test, oddly enough, the positive was higher. It's odd because I'm eating a lot more gluten now then I did at the time of the first test. But that may be accounted for by something as simple as the possibility of a different lab tech running the tests. It was IFA, and I think I remember those being somewhat subjective.

Good news: I just had my first appointment with a GI yesterday. They drew blood for the tTG and Total IgA. Results will be back in 5 days. Also, I will be going in for a biopsy in a few days, and the GI doing the biopsy has many celiac disease patients in her practice.

[leadmeastray88]

Yes, I know...he did use some outdated tests. BUT, I'm actually grateful for the ARA, as that is the one that showed up positive. If that had been excluded because it's considered obsolete, I may have been overlooked. What I've read (pg 143 of "Kids With Celiac" by Danna Korn being just one example) is that the ARA is not sensitive, but it is very specific. Only folks with DH or celiac disease come up positive. In fact, it is considered 100% predictive of celiac disease when positive. I've just found out that on both my tests, ARA was positive. In the first test, oddly enough, the positive was higher. It's odd because I'm eating a lot more gluten now then I did at the time of the first test. But that may be accounted for by something as simple as the possibility of a different lab tech running the tests. It was IFA, and I think I remember those being somewhat subjective.

Good news: I just had my first appointment with a GI yesterday. They drew blood for the tTG and Total IgA. Results will be back in 5 days. Also, I will be going in for a biopsy in a few days, and the GI doing the biopsy has many celiac disease patients in her practice.

Well, congrats to you! It sounds like you're on the right path! I hope your biopsy goes well and that all your symptoms will resole with the gluten-free diet.

Best wishes to you!

-Kim

[bsiyatadshmayah]

I'm specifically looking for someone who understands the ARA test. I realize that it is considered outdated. BUT, I get a small amount of conflicting information about it. Since it was done and it was the only positive value...and it was positive twice, I think I need to understand it with certainty.

On page 146 of Danna Korn's book, "Kids With Celiac" there is a chart which lists the various blood tests, their sensitivity, specificity etc. The ARA is listed. According to her chart, ARA is not sensitive, but it is very specific. Now, the GI who is going to be doing the biopsy called me back to answer my question. I wanted her opinion. She told me the ARA is not specific!! Very confusing.

All the lab sites I've looked up say it is very specific to celiac disease. Not sensitive means there is a significant number of people who are celiac positive, where the ARA test will come back negative (40%). But if it does show up positive, since it is specific, it is a fairly certain sign of celiac disease.

So, who's right? The GI, or all the literature I've read?

[happygirl]

I think you should talk to your doctor about the question you have. Tell her your concerns - you have seen literature that states one thing, and she says something else. Can she explain why she thinks it isn't important?

Also, before your biopsy, ask your doctor how many biopsies they plan to take.

[Matilda]

I don't know the answer to the sensitive/specific question.

However, I think this is one of those tests which is reported as a concentration, as some other auto-antibodies are, ie 1:20 is more positive than 1:40, for example.

[bsiyatadshmayah]

I don't know the answer to the sensitive/specific question.

However, I think this is one of those tests which is reported as a concentration, as some other auto-antibodies are, ie 1:20 is more positive than 1:40, for example.

That is interesting indeed. Do you have any idea how I could find out if that is the case with this test?

I had the biopsy done. I will have the results next week, both the blood work and the biopsy and will let the community here know when they are in.