Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie In Los Angeles


Emily8608

Recommended Posts

Emily8608 Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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 Community Regular

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 Community Regular

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 Contributor

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 Community Regular

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 Grand Master

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Emily8608 Newbie

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. 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,392
    • Most Online (within 30 mins)
      7,748

    Misty Looney
    Newest Member
    Misty Looney
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • bold-95
      Diana, I replied “ready,” but I’m brand new to the site and don’t know if I replied via the correct place.  I would like to participate.
    • bold-95
    • cristiana
      Luke warm bath (deep) with a handful of Epsom salts, and bath for about 20 minutes.  Be careful getting out of the bathtub, the magnesium (Epsom salts) can make you feel a bit woozy.  I've suffered from costochondritis, might be what you have?  I find rest very helpful, and avoid any foods that bloat you as this can put added pressure on the ribcage.
    • bold-95
      Are you saying that celiac causes you rib pain?  Or that your ribs are fragile due to being celiac?  Or that the vitamins you take act as an analgesic, and that OTC pain-relievers do not work for you?  I don't understand the connection.
    • bold-95
      I am so discouraged!  I would rather not eat... or even eat junk (with the expected result)... than cook!  I have been gluten-free (hah) since 2016.  But my husband eats tons of bread, biscuits, cake, muffins... you name it.  Everything on the SCD that's illegal, he eats.  And buys it and brings it home, many times in trying to please me!  Please don't suggest we have a heart-to-heart talk;  been there, done that.  He truly is unable to change.  ONE reason is that culturally, we are opposites.  Another reason is that he is in his 80's and isn't about to do something he doesn't want to.  If I don't cook for him, his nutrition would be less than poor. My mental state is going from bad to worse.  He is also declining mentally (memory, reasoning) and physically, and that makes me want to cry all the time; that, or be angry. My celiac symptoms are not completely resolved, just somewhat better. I have just read the book re SCD, wish I could try that diet (cause it promises a cure) but the learning/implementing curve is more than I can handle if I have to cook the way they say is necessary. I live in an area with poor medical help; I tried the (only) dietitian listed in my area who is celiac knowledge certified, but she doesn't accept my insurance.  I'm on my own. I am hypothyroid, and on HRT.  Cannot tolerate Buspirone; anti-depressives are ineffective due to gene mutations (I've been tested). Can anyone help?  Or not....
×
×
  • Create New...