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

Help With Understanding My Blood Test

tTG-killer

Recommended Posts

tTG-killer Newbie
tTG-killer
Posted

Hi all,

Cliff Notes:

It is clear that I have Celiac (biopsy and blood work confirmed) I'm just trying to find out why I still feel so crappy and whether or not it is gluten or something else. Do the numbers after 2.5 months suggest I am still getting enough gluten to make me sick?

Longer Version:

So I was hoping that someone here may be able to help me understand my blood results a bit better. I asked my GI but I am skeptical of his interpretation. Basically he said that at this point (2.5 months gluten free) I should not be showing positive on any of my tests. However, I thought that it could take longer for some of the numbers to drop off. To me I thought it looked like my numbers were much better, but I do have a difficult time understanding them and it doesn't help that different labs processed them.

The numbers only concern me because I still feel very crappy. I have intense abdominal pain every morning, other abdominal issues throughout the day and reflux type symptoms all day long. These symptoms came on over night. I never had them until I went on a high dose of Protonix for gastritis (about a week before I started my gluten free diet). The doctor seems to think the reason I still feel crappy is gluten, but I have noticed very little to no decrease in symptoms since starting gluten-free. This makes me wonder if my symptoms are in fact due to gluten or if there is something else going on.

Anyway here are all the numbers I have:

ARUP Lab 3-20-2010

Celiac Reflexive Panel IGA 304 U/ml (68-378)

Deamidated Gliadin Peptide AB IgA 21

Negative <19

Weak Positive 20-30

Positive >31

Tissue Transglutaminase Ab, IgA 62

Negative <19

Weak Positive 20-30

Positive >31

LabCorp 4-10-2012

t-Transglutaminase (tTG) IgA 4 U/ml

Negative 0-3

Weak Positive 4-10

Positive >10

t-Transglutaminase (tTG) IgG 15 U/ml

Negative 0-5

Weak Positive 6-9

Positive >9

Endomysial Antibody IgA Negative (Negative)

ARUP 05-07-2010

Tissue Transglutaminase Ab, IgA 36

Negative <19

Weak Positive 20-30

Positive >31

Endomysial IgA, Titer <1:10 (Not Listed)

If you made it through all that and have any insight I would greatly appreciate any insight. Thanks so much for your time.

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

Celiac.com Sponsor (A8-M):


BabsV Enthusiast
BabsV
Posted

Not sure how your would compare these since it looks like different sets of tests? But from the ARUP tests it looks like your Tissue Transglutaminase Ab, IgA has dropped from 62 to 36 which shows movement in the right direction...namely downward! But I'm not a doctor or medical specialist.

At 6 months gluten free I still showed up as 'positive' but was much much closer to the negative range than I had been when I was diagnosed. My doctor told me that the results showed that I was responding to the diet and that it can take months (more than a year+) for some to get into the negative range. It all depends on how high your numbers were to begin with, how long you were sick, how you heal, how strict you are about the diet, accidental glutenings, etc. He told me that at 2 years gluten-free he would worry if I weren't in the negative range.

Is there any chance you are getting trace gluten? From medicines? From cosmetics/skin care products/shampoo? Did you replace your toaster/colander/wooden spoons/etc? Do you have a shared kitchen? Do you eat out alot?

Sticking to very simple, natural meals (meat, veg, fruit, eggs, etc.) and skipping the gluten-free replacement food may help you feel better. I'm 9 months gluten-free and still having pain issues although most of my other symptoms have improved greatly. I'm going light on grains and gluten-free replacement foods and that does help.

And 2.5 months gluten-free is not a long time. My doctor told me that I had to give it a minimum of 3 months for the start of any improvement in symptoms and more likely 6-12 months to be on the road to recovery.

beachbirdie Contributor
beachbirdie
Posted

Hi all,

Cliff Notes:

It is clear that I have Celiac (biopsy and blood work confirmed) I'm just trying to find out why I still feel so crappy and whether or not it is gluten or something else. Do the numbers after 2.5 months suggest I am still getting enough gluten to make me sick?

Longer Version:

So I was hoping that someone here may be able to help me understand my blood results a bit better. I asked my GI but I am skeptical of his interpretation. Basically he said that at this point (2.5 months gluten free) I should not be showing positive on any of my tests. However, I thought that it could take longer for some of the numbers to drop off. To me I thought it looked like my numbers were much better, but I do have a difficult time understanding them and it doesn't help that different labs processed them.

The numbers only concern me because I still feel very crappy. I have intense abdominal pain every morning, other abdominal issues throughout the day and reflux type symptoms all day long. These symptoms came on over night. I never had them until I went on a high dose of Protonix for gastritis (about a week before I started my gluten free diet). The doctor seems to think the reason I still feel crappy is gluten, but I have noticed very little to no decrease in symptoms since starting gluten-free. This makes me wonder if my symptoms are in fact due to gluten or if there is something else going on.

If you made it through all that and have any insight I would greatly appreciate any insight. Thanks so much for your time.

I'm a little surprised they tested you before 6 months was up. Though it looks like the trend is downward, so that is good.

Are you still taking the Protonix? Did you read anything about it before you started taking it? You can find a little info on side effects Open Original Shared Link as well as side effect information, such as vomiting, diarrhea, gas, headaches.

Skylark Collaborator
Skylark
Posted

It looks to me like you've gone from a high-positive TTG to a low-positive between the two ARUP tests. I think things are moving in the right direction. It's not unusual to still be symptomatic after only 10 weeks. That really isn't long on the diet.

Everyone has different levels of sensitivity to gluten. It's possible you are getting traces of it that are making you ill. The diet takes a fair amount of practice. Are you eating mostly whole, natural foods and avoiding processed stuff? Shift to eating mostly meats, fish, fruits, and veggies and see how you feel. :)

tTG-killer Newbie
tTG-killer
Posted
  • Author

Thanks everyone for your thoughts.

Like you all have mentioned the fact that my tTg IgA had dropped made me happy, but when my doc said I should be in the negative range it was kind of a blow as I felt I had been very careful and wasn

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,170
    • Most Online (within 30 mins)
      7,748
    Lisa Crowley
    Newest Member
    Lisa Crowley
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...