Test Results

[mom26boys]

I am now more confused than ever with my test results and hope someone can help me. I had a positive endomysial antibody screen that was ordered by my primary care physician. His office told me it appears that I have celiac, so they sent me to a gastroenterologist. The gastro said the endomysial antibody wasn't the right test and that I needed a TTG Antibody.

Before getting my first test (endomysial antibody), I tried the gluten-free diet for 3 weeks and could not believe the improvement in my symptoms, especially in the fatigue and aching joints. This is what prompted me to get tested for celiac. When that test came back positive, part of me was ecstatic to finally have an answer for all the undiagnosed problems I've had over the years. When I had the endomisial antibody, I had gone back on the gluten, but not as much as before and the doctor told me it wouldn't matter. Even with not having had that much gluten, this test came back positive.

The results for the TTG test the specialist ordered are:

TTG Antibody, IGG <3 (ref range <7 u/ml)

TTG Antibody, IGA <3 (ref range <5 u/ml)

Immunoglobulin A 229 (ref range 81-463mg/dl)

Now for this test, I had been back on gluten for several weeks prior, but would give myself "breaks" without gluten for 2-3 days at a time because I was feeling so bad being back on the gluten. When I saw the specialist, he told me I needed to be on gluten for 10 days, then he said 7 would be fine. I got back on gluten full force and endured it for 7 days, counting the days I could finally be off of it for good, until I did the blood test, including having pancakes the morning of the test. I just received a copy of my "normal" results and I'm more confused than ever. The previous test was positive, even though my gluten was somewhat decreased, and this test, where I stuffed myself full of gluten was normal.

I have read that the endomysial antibody screen is specific to celiac, but now this other test is showing these levels to be normal. I have read that there are lots of false positives, but I truly expected this test to be abnormal, since the other one was too. I realize that the true answer comes from how I feel going gluten free and I do feel much better. The only thing I'm noticing different is that I'm getting sick with colds now that I'm off gluten, when I haven't gotten sick with a cold in years. Don't know if thats related or not, but other than that I feel great and have no desire to ever eat gluten again.

I'm sorry for the long post, but as I mentioned before I am REALLY confused and could sure use some help understanding. I have read so much about all these tests and celiac in general that I feel like one of those people on the Bing commercials with information overload. I would really appreciate any information or advice that can help me figure out if what I have is celiac or a gluten intolerance. I know I could just go off the gluten and not worry about it, but I have a lot of kids, and I feel I owe it to them to find out for sure. Plus, so many people and doctors have looked at me like I'm from another planet for thinking that my problem could be celiac because I don't fit the textbook celiac profile, that I feel, for my own sanity, that I need to know for sure either way. Thanks so much!!!

[ravenwoodglass]

Well first off there are a lot of false negatives but false positives are really rare and usually heard of when the endoscopy is either 'not conclusive' or a false negative itself.

You need to listen to your body first and tests second IMHO. You do not need a doctors permission to be gluten free and if eliminating gluten helps and adding it back in makes symptoms come back you really have your answer.

Testing leaves a lot to be desired and my doctors only going by tests and never even telling me what those tests were for cost me a lot of years and resulted a great deal of pain and in some of my neuro issues being unresolved because of the length of time they went on. I also had severe arthritis, and my celiac associated gene is thought to be a RA gene here in the US. It took about 6 months for total remission of my joint pain, some deformity still remains in one hand but I have been pain free from the arthritis now for almost 7 years. I am very thankful they didn't do gene testing on me until 5 years after I was diagnosed celiac.

Bottom line, listen to your body.

[nora-n]

A positive EMA cannot be explained away by anything else! It is enough to order an endoscopy and if they do not botch it up by taking only one or two biopsies on the wrong places ony, it will be positive. The doctor is totally wrong.

A negative ttg in this setting does not mean it is inconclusive since a positive EMA means so much (=celiac) and you were off guten

[mom26boys]

A positive EMA cannot be explained away by anything else! It is enough to order an endoscopy and if they do not botch it up by taking only one or two biopsies on the wrong places ony, it will be positive. The doctor is totally wrong.

A negative ttg in this setting does not mean it is inconclusive since a positive EMA means so much (=celiac) and you were off guten

Thank you so much! I thought so too, but these doctors take a look at me and since I don't fit the celiac profile, they tell me the positive EMA could be caused by all kinds of other things, which even if that were the case, it would seem to me that as doctors they would want to find out what could in fact be causing it to be positive. Everything I've read on EMA says its 100% specific to celiac, and thankfully my gp says so too, but he needed to refer me to a specialist. I am off gluten now and feeling much better (besides the getting lots of colds that I never used to get before), and I know I don't need the doctor's permission to go off gluten, even though for some reason the gastros I've seen seem seem to think you do!!! After my experienced with these gastroenterologists, I started to think that maybe I was crazy and it was all in my head, but after listening to my body, I know that I'm not. Thank you for restoring my sanity!!!

[mom26boys]

Well first off there are a lot of false negatives but false positives are really rare and usually heard of when the endoscopy is either 'not conclusive' or a false negative itself.

You need to listen to your body first and tests second IMHO. You do not need a doctors permission to be gluten free and if eliminating gluten helps and adding it back in makes symptoms come back you really have your answer.

Testing leaves a lot to be desired and my doctors only going by tests and never even telling me what those tests were for cost me a lot of years and resulted a great deal of pain and in some of my neuro issues being unresolved because of the length of time they went on. I also had severe arthritis, and my celiac associated gene is thought to be a RA gene here in the US. It took about 6 months for total remission of my joint pain, some deformity still remains in one hand but I have been pain free from the arthritis now for almost 7 years. I am very thankful they didn't do gene testing on me until 5 years after I was diagnosed celiac.

Bottom line, listen to your body.

Thank you again, Ravenwood. You are absolutely right about listening to my body! I've been thinking that maybe I'm crazy and this is all in my head, but my body yells at me whenever I do eat any gluten so that is my answer. After all these years of knowing something is definitely wrong and no one being able to help me figure it out, it would just be so nice to have validation and know that I wasn't crazy. I will still pursue the genetic testing, but like you said, its not something I have to do right away so I can live with that. Thank you again for time and support you put into this forum! It truly has been a blessing for me to have this forum!

[mushroom]

I notice no one answered your question about catching lots of colds now that you are gluten free. I found that immediately after quitting gluten I was very sensitive to any infection going around and caught it much more severely than usual (i quit it in November and was sick all of December and January with successively a three-week coughing flu, followed by three weeks of acute bronchitis a few days later. But since then I have had no respiiratory infections at all which is extremely unusual for me; however, strangely, this summer I developed allergic rhinitis, firstly it was obviously pine pollen that was causing it, the second bout the cause remains unknown. It seems really weird for that to happen this late in life.

[mom26boys]

I notice no one answered your question about catching lots of colds now that you are gluten free. I found that immediately after quitting gluten I was very sensitive to any infection going around and caught it much more severely than usual (i quit it in November and was sick all of December and January with successively a three-week coughing flu, followed by three weeks of acute bronchitis a few days later. But since then I have had no respiiratory infections at all which is extremely unusual for me; however, strangely, this summer I developed allergic rhinitis, firstly it was obviously pine pollen that was causing it, the second bout the cause remains unknown. It seems really weird for that to happen this late in life.

Thank you! And thank you for the link back here. Initially when you said you had replied to my previous post, I thought it was a thread that I had posted on that someone else asked the same thing and I posted that the same thing was happening to me. I lost track of the thread and have't been able to find it to see if there were any other responses, since I don't remember who the orinigal poster was. Anyway thats the one I thought you were referring to, so I'm sorry if I seem like a complete idiot! I forgot that I also put that in this post so thank you so much for replying.

It is exactly how I feel right now--like I catch everything going around and more severely than ever. I've had this coughing flu like you mentioned for going on 2 weeks now, and we are on a vacation which makes it worse! I took antibiotics for it last week, which I never do, but I hoped that it would knock it out before our trip, but since we got here on Sunday, it has come back and gotten much worse! Hopefully, like you, I can look forward to this phase being over with and getting no respiratory infections. I am sorry about your allergies. My husband and son are very allergic to thngs like pollen and other things, so I know how difficult it is t deal with. Hopefully those will be over for you soon too! Thanks again!!!

[Nataliyc]

Dear all,

This is my very first posting. Hi, my name is Nataliy.

I have hypothyroidism, and this prompted me to do some celiac tests.

Here is the results of my test. I would appreciate the comments.

Deamidated Cliadin Abs, IgA ....7.6 .............0.0-10.0

Deamidated Gliadin Abs, IgG.....0.8 .............0.0-10.0

t-Tranglutaminase ( tTG) IgA.... 1 ..............0-3

t- Transglutaminase ( tGG) IgG...1 .............. 0-5

Endomysial Antibody IgA .... Negative ......... Negative

Immonoglobulin A, In, Serum.....301.............70-400

I thought, I was negative for celiac or glutein sensitivity, yet, my naturopathic MD told me that the very first IgA is 7.6 and it should be "0" to be considered as a non-celiac.

She had told me that I am possible have glutein intolerance.

Please, let me know what you all think

Thank you

Nataliy.

[Skylark]

Hi and welcome. You might get more answers if you start your own thread. It's hard to know you've switched the subject to your own lab results otherwise.

A test result that is within the reference range (between 0 and 10 on your deamidated gliadin) is within the error of the lab and is considered normal. It means that they cannot distinguish your test from the normal assay background. I am a little concerned that your doctor doesn't understand this. A zero reading on an antibody test would be rare.

If you react to gluten in your diet, you may have gluten intolerance but you certainly are not positive on your celiac blood panel.