Jump to content

  • 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
      131,826
    • Most Online (within 30 mins)
      7,748
    Martis
    Newest Member
    Martis
    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

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.