Newbie In Los Angeles

[Emily8608]

Hello everyone, 

 

I've been lurking for a few weeks but waited until my blood test came back to join. I have quite a few of the standard symptoms and more of the vague ones, but I won't bother going in to those now. I'm more looking for confirmation of my blood work and advice for the LA area. First, my results (for what it's worth I have not seen a doctor about any of this yet, instead I chose to get the tests done at a lab and pay out of pocket in case I was crazy and wrong then I wouldn't have to deal with an MD charging me to tell me that):

 

tTg AB, IGA 9, normal listed as <4

IgA 163, normal 81-463

Endomysial antibody screen (IGA) with reflex to titer was positive, normal is negative

Endomysial antibody titer 1:5, normal is <1:5

 

I'm a nurse, which is both helpful and harmful at times. I know that with blood work there is a lot of variation with how "abnormal" a particular test is. As in some tests are very abnormal when the numbers are off by just a few, while others are not concerning until they are off by a few hundred. Because of this knowledge and trouble finding more specific info online, I can't figure out if my results are REALLY positive or a weak positive. Any interpretation here would be helpful.

 

Second question, does anyone live in the Los Angeles area and have advice on doctors? It looks like UCLA has a Celiac Clinic but I don't know much more about it. I'm new to the area and since I'm taking a job at USC starting next month I don't have insurance details all figured out as to who I can see and who I can't. I'm sure docs at USC will be covered, but as far as I can tell they don't have celiac specialists per se. If anyone has a GI in town that they really like I would love to hear about them. 

 

Thanks in advance!

 

Emily

[GottaSki]

Welcome Emily!

 

With celiac antibody tests there really is no difference between "weak positive" and positive.  Many labs still list the results in degrees, but positive is simply positive.  I had mild positives on each test in the celiac panel with complete villious atrophy and I've seen folks with huge antibody numbers that had much more mild intestinal damage....we are simply all different.

 

I suggest you do make your GI appointment with the UCLA Celiac Center -- finding a gastroenterologist with real celiac knowledge and experience is important.

 

I knew the former Director of UCLA's center, Dr. Gregory Harmon, but the last person I referred there found he has left practice to concentrate on teaching/research.  Would think his replacement would still be a very good choice.

 

Minimally, you will want to have more blood work to complete the celiac antibody panel along with nutrient testing.

 

Good Luck

[nvsmom]

I agree that a positive is a positive. Think of it like pregnancy testing - for some people those double lines are very faint, but they still mean the same thing..

 

And I would not call your tTG IgA result a weak positive. You are about triple the normal upper limit; a non-celiac would have a result of 1, not 9. KWIM?

 

The deaminated gliadin peptide tests (both IgA and IgG) and the tTG IgG tests would be good ones to request. Are you going to pursue the biopsy?  Two positive celiac tests is really quite definitive, and I think you could accept celiac disease as a true diagnosis already.  Then again I'm biased, I went gluten-free based on a positive tTG IgA and EMA IgA (skipped the biopsy) and I feel much better.

 

Don't go gluten-free until your testing is done - you probably already know that.  

 

Good luck.

[Fenrir]

From what I read the test is like a pregancy test, positive or negative. You are producing antibodies that you shouldn't be at all, so that indicates something is going wrong. However, small number of people with a weak positive result will have another autoimmune disease that might cause a false positive but that is a pretty small number.

 

My test results were almost exactly the same as yours but I'm not diagnosied with Celiac yet. I just had my biopsies done yesterday, so I will find out by the end of the week.

 

In any case, you should get the EGD with biopsies done to confirm it.

 

My tTG IGA was 8 (normal 0-3).

[NoGlutenCooties]

Hi Emily and Welcome!

 

Just wanted to add that my ttg iga was 13, on a scale that considered anything over 11 as positive.  My biopsy showed moderate to severe villi damage.  So don't be fooled... positive is positive.  Welcome to the one club you never really wanted to join!

[Fenrir]

Just and FYI, got my biopsies back this afternoon and I have Celiac. 

 

So, like people said, positive is positive. Mine was classified as "weak" positive and I most definitely had Celiac per the biopsy.

[cyclinglady]

Aw.... Welcome to the club! Here's to a speedy recovery!

[Emily8608]

Thank you all for the quick follow up! I definitely intend to get the biopsy done as I don't think that my family or I can manage the lifestyle change without an official diagnosis. There's also no chance of me going gluten-free before the biopsy as I am currently eating my way through what I'm calling my "Gluten Bucket List" of things I won't be able to eat afterwards. Being vegan we already eat lots of naturally gluten free foods, but there are of course plenty of things that I'm disappointed to give up and so I'm eating them now. I'm paying for it with increased symptoms now, but I think this is better than finding out about celiac and having to give up gluten cold-turkey.  I'm blessed with an incredibly supportive boyfriend who has already gone through the house figuring out what we need to get rid of and is finding substitutes for my favorite things. I think he got more excited about the selection of gluten-free/vegan frozen pizzas he found at Whole Foods today than I did. : )

 

Fenrir, sorry about your official diagnosis, but I hope you start feeling better soon! Sounds like we will be newbies together.