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
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.