Labs And Testing

[chaddwell]

Hello,

I am looking for opinions on my situation. I am 31 and have been stuggling for about 10 years with various symptoms including hair loss, acne, loss of muscle tone, fatigue, anxiety, bloating, fragrance/chemical sensitivities, eye issues, etc....as well as glutamine deficiency, low iron stores, and low vitamin D. My cholesterol is also very low.

I was first tested for Celiac in 1999 through Smithkline Beecham Clinical Labs if anyone remembers them. The endomysial screen was a high positive. Biopsy was negative. Doc figured not Celiac. I have since had follow up testing through Quest, who took over Smithkline Beecham and every test from Quest is negative over the years.

I did test positive for the DQ8 gene through Quest. I know the endomysial test is very specific and cannot be positive with anything else.

My question is do you think it's possible I'm not gettng a positve result now from Quest because they are completing the test differently or have different ranges then when I had the positive from Smithkline even though Smithkline essentially became Quest?

I am having another round of testing done but do not want to use Quest. I want to try another lab to see if I get different results. I was thinking of trying Lab Corp.

Anyone have any suggestions for labs to have blood drawn? Any other thoughts or suggestions on this would be appreciated. I find it frustrating. I am thinking of requesting another biopsy since the one I had done was in 1999. If I didn't have the gene I would probably let this go but I want to know what's wrong with me.

Thanks!

[ShayFL]

Have you tried a Gluten Free diet?? To see if you feel better. If you do, you have your answer.

I dont think Lab Corp is any better than Quest. Accuracy mainly depends on the technician who analysis your blood at the time.

[chaddwell]

Hi,

I have tried a gluten free diet only for a period of a couple of weeks and I did feel good but then went to feeling back to not great again. So I gave it up. Is that normal? Would I feel good right off the bat and continue with that? I haven't tried gluten free again since and that was a couple of years ago.

If from Quest I haven't been able to get another positive in the last 6 years do you think the first positive from Smithkline was wrong? It was a strong positive too.

Thanks for the replies!

[nora-n]

The endomysial antibody test is a manual test and very dependent on the technician doing it. It involves looking at the sample and looking for wether one sees it flouridating (a halo or something like that).

Two people can see different things on the same sample.....it is dependent on what they think is positive or not.

(on the forums I even read some year ago that pathologists sometimes were wrong on celiac testing, they demanded total villious atrophy, and if the patietn had flattened villi they would not give a positive diagnosis. That would be marsh 4 or more vs marsh 3. And, I also read that some patients sent the slides to be revieved at another lab, and they diagnosed with increased intraepithelial lymphocytes, which is some lower marsh stage. There is a new article at celiac.com about that (they call it signs of inflammation))

Now they often have replaced this test with the tissue transglutaminase test which tests about the same thing. This is an automated test, but the same sample will come negative or postitve at different labs.

There was an asticle here at celiac.com abut some scientists sending blood from a number of diagnosed celiacs to a lot of different labs, and some only got 50% of the celiacs, and some diagnosed more than 50%.

Also, some celiacs with positive endomysial antibody tests will test negative on the Ttg-test.

Also, if one is IgA deficient (10% are) one has to run the IgG version of that test.

Did they ever test your Ttg-IgA and IgGg, and

antigliadin IgA and IgG,

and total IgA?

About your question, all the labs have since 1999 changed test kits, and that several times as far as I think. And the cutoff ranges are diffeeerent on different labs.

And, we have read here that labs even botched up on lab ranges, so that positive tests read negative and teh patient posting here had to notify the lab that they interpreted the test wrong....and the lab had to write to all the other patients that their tests really were positive.(they had sent tese tests out of town and used the wrong ranges after the results came back)

Nora

[chaddwell]

Hi Nora,

Thanks for your reply. I have had all the testing you asked me about. All have been negative except the endo back in 99. Then no positive since from those tests but my symptoms have increased or not gone away. I just had some other tests done from another lab so we'll see. If I didn't have the DQ8 gene I probably wouldn't be harping on celiac but I'm not ready to give up yet to see if this is the cause of my ailments.

One other test I did was ordered by me from Optimum Health Resources I think it was and it was a finger prick test where you had to put your blood on to a disc with a buffer and it gave me a positive result this time around. I did the test a year ago and it was negative.

My positive with the finger test was for gliadin.

I drink beer and feel yucky the next day, puffy, etc...but I had a few wheat beers at a micro brew place which I don't ever drink and a day or so later I broke out with a nasty rash all over my face, neck, chest, and back. It was like sandpaper, red, and with white heads or something all over. It was embarrassing. I suspect it was from that beer which I haven't had since.

Does that sound like a wheat reaction??

I eat gluten all the time at the moment...I'd like to revisit a GI doc and see how that goes but regardless, I am going to try gluten free again and see where that takes me.

Shannon

[nora-n]

I think you just fall right below the detection limit in the tests......the test rages are calibrated to only pick up really positive cases (with total villous atrophy, or at least flattened villi, they do not want any "false" positives at all).

I guess the finger prick test was for antigliadin IgG. These often turn positive a bit earlier than Ttg tests. (but there are always some that only have one test posiitive, or none)

They are working on some more testing, like the three day gluten challenge where you must have been off gluten for a week at least before, were they look for freshly activated T cells.

I guess you have patchy villi damage and the villi are not so much damaged but you have the other damages from gluten.

It is also known that in the case of DH, not all have villi damage.

You really have to eat a lot of gluten, like at least 0,g per kg a day, for a long time for the tests to be positive, and stress is somehow connected with the start of the autoimmune rreaction to gluten. Someone explained that the damage is there, and the intestines heal quickly, but in the case of stress, the body cannot catch up and then you get more villi damage.

https://www.celiac.com/articles/21596/1/Is-...ease/Page1.html this artice says really that some patients have endomyssial antibodies but the villi damage is only marsh 1 or 2, not the required marsh 3a or b or c, or 4 (total atrophy, irreverisble atrophy)

nora

[Ursa Major]

All of your symptoms could be caused by celiac disease. Low iron and vitamin D are typical deficiencies with celiac disease. You have the gene, and you once had a positive test.

Your two week trial with the gluten-free diet was not enough to really see if it makes a difference, some people take six months before they notice a real improvement! You gave up way too early.

You might want to try the gluten-free diet for at least three months before you decide it isn't working. And while you're at it, you may want to eliminate dairy and soy as well, to make sure you can heal. Some people won't see much improvement until they eliminate all three.

[chaddwell]

Thanks Ladies for your responses!!

Nora, I'll check out that link you sent, thanks.

I consider myself a late bloomer. Didn't get my period till I was 15 and was left out in the cold in the breast department. Wasn't short though, very thin. I had surgery at 21 to remove my tonsils and it wasn't until 3 months later that I noticed my hair was thinning. When it first started it went through a period of thinning quickly but now it's a gradual thinning and hasn't stopped since. That was the start of many things. I had infertility, irregular periods, blah, blah, blah. The texture of my skin on my face has changed to gross. I've always had bloating even as a kid.

I've also developed some issue with my right eye. My face isn't symmetrical to begin with but my right eye has seemed to have gotten bigger or protrude more or something. It bothers me physically a lot. I have a weird sensation and sometimes feel like my eyes aren't focusing together. I wonder if I have inflammation in it because some days it protrudes more then others or my bottom lid is lagging more. I have symptoms of dry eye but the tests for that were fine. The doc gave me Restasis to use anyway and it helps somewhat. My eye visits check out OK and they always ask about my thyroid which has been fine. The eye issues started after my daughter was born. Smells and eye makeup bother them usually. I used to wear eye makeup all the time with no problem. My right eye always has sties. Never a week without one for years now. Last year my right eye twitched everyday for three months.

I also have moderately severe diverticulosis. That was discovered 10 years ago at 21. If I am celiac does that affect how fiber is absorbed? The doc recommends fiber for diverticulosis.

Aside from low iron and D (which I am on supplements for), my cholesterol is low. LDL has been 19 at it's lowest, total can range from 90s-130 and triglycerides are 90 or below. I don't know if anyone is familiar with complement proteins but one is consistently low and the other fluctuates, C3 and C4.

Back in the day I was an aspiring model and people would ask me all the time if I was. I had to give that up because you can't have a model with thin hair and nasty skin. It's hard for me emotionally and mentally what's happening to me physically. I know I should be grateful and I am for what I have in my life but it's still hard not being what I once was and should be at my age. Not knowing what's wrong with me makes it worse. I feel like I am aging before my time. My anxiety level has skyrocketed and it sucks.

Once I start gluten free again, is it possible for my hair to grow in again and for the shine to come back? It's been 10 years. It lacks luster now and is dry. Can my eye get better and feel better? Can I wear makeup regularly? Can I try to pursue modeling again? That would be exciting. I just want me and my energy back.

Thanks for listening.

[chaddwell]

PS- Wanted to add that I also have mild scoliosis. Haven't heard much about celiacs and that...

And my poor daughter was born with food allergies. She developed eczema by 8 weeks old and would break out in hives after nursing. At 9 months she had a severe reaction while eating barley cereal and that's when we found out she was allergic to wheat, oats, and barley among a bunch of other stuff. She is five now and is not allergic to barley anymore.

I wonder if whatever is going on with me allowed stuff to pass to her to make her susceptible to these allergies. I would like to have another child someday but I'm afraid they will have allergies like my daughter. I don't want to go through that again. It's scary and lots of work.

She was also born 4 weeks early.

I wonder if going gluten free will heal me and allow my next baby to be healthy.