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

Blood Testing While Gluten Free

Tranquillity

Recommended Posts

Tranquillity Rookie
Tranquillity
Posted

First off, I know that you need to eat gluten to have accurate results. Thing is, I had NO idea my doctor had ordered celiac tests, until I had a needle in my arm and gazed at the papers! I've been gluten free since 2007-10-30, which is 2 months and a couple of days.

I'm not sure which tests were ordered, but lets give him the benefit of the doubt and suppose it's the full "celiac panel". All I know is that it was quite a few tubes, although other (non-celiac) tests were also ordered. The only test I know for sure was in was the tTG antibodies.

Will the results look good no matter what, or will they still look less-than-perfect IF I'm celiac? I really doubt I am at this point, though.

Thanks in advance :)

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted

Well it's not so easy..

The difficulties are two fold...

The simplest is that the 'normal' ranges are used and these have a wide range... your antibodies will drop off over time and this is pretty individual, not only for the person but also the time in your life and other health issues etc.

The results will be compared to this norm so a 'slightly elevated' might be significant given the amount of time you are gluten-free but MD's prefer nice categories.

aikiducky Apprentice
aikiducky
Posted

Some people who had a high ttg at diagnosis still have a higher than normal ttg when they have follow up testing six months or so into the diet, so I guess there's chance that you still could have some positives now. It's impossible to say of course since we don't know what your numbers would have been when you were still on gluten. I'd say in any case if anything is even a little bit positive it should be taken seriously. What are you planning to do, are you going to stay gluten free no matter what, or are you thinking that you might not need to after all?

Pauliina

Tranquillity Rookie
Tranquillity
Posted
  • Author
Some people who had a high ttg at diagnosis still have a higher than normal ttg when they have follow up testing six months or so into the diet, so I guess there's chance that you still could have some positives now. It's impossible to say of course since we don't know what your numbers would have been when you were still on gluten. I'd say in any case if anything is even a little bit positive it should be taken seriously. What are you planning to do, are you going to stay gluten free no matter what, or are you thinking that you might not need to after all?

Pauliina

I haven't noticed *any* change whatsoever on the trial diet, so if the blood test is ("completely") negative, I'll go back on gluten to check for reactions. If there is none, I'll most likely stay on.

Celiac wasn't very likely in the first place (long story, but lets just say that my symptoms don't really point to a stomach/digestive problem at all), but I figured a trial wouldn't hurt. :)

Offthegrid Explorer
Offthegrid
Posted

My family doctor ordered a blood test that came back positive. The gastro I was referred to ordered a different blood test over a month later that came back negative. The gastro said my family doc's test wasn't used any more.

But, bottom line, I get sick when I eat gluten. I did a gluten test, and it's painfully obvious that I am gluten intolerant. And when I accidentally eat it, I get sick even when I don't *know* I've eaten gluten. Most recent example is that three weeks ago I drank tea that I didn't realize had barley in it.

All my brother's blood tests and an endoscopy came back negative. He also clearly can't eat gluten.

So, I personally wouldn't put too much stock in a negative blood test. Do a gluten trial after you get the results if they are negative.

Gwen B Rookie
Gwen B
Posted
My family doctor ordered a blood test that came back positive. The gastro I was referred to ordered a different blood test over a month later that came back negative. The gastro said my family doc's test wasn't used any more.

But, bottom line, I get sick when I eat gluten. I did a gluten test, and it's painfully obvious that I am gluten intolerant. And when I accidentally eat it, I get sick even when I don't *know* I've eaten gluten. Most recent example is that three weeks ago I drank tea that I didn't realize had barley in it.

All my brother's blood tests and an endoscopy came back negative. He also clearly can't eat gluten.

So, I personally wouldn't put too much stock in a negative blood test. Do a gluten trial after you get the results if they are negative.

My doctor ordered a Tissue Transglutiminase IGA Serum test a year ago (whatever that is) and the result was a low negative. I was told that I might be low on B12 so to take supplements and this eased my dizzyiness and fatigue for a while but after a year of escalating gastric woes I decided I didn't have time to be sick over the holidays and have been gluten free since Nov 1 07 and dairy free about a month. I have been much better with only a couple of bad days usually when I found out I had had something glutinous or cassein.

One time was particularly bad on Dec 24 I had a supposedly gluten free meal in a restaurant which claims to have gluten free menus. I developed severe hives and swelling so bad my chin disappeared into my neck and had to get shots at the emergency room to counter the histamine reaction, not to mention the usual stomache ache I got later that day.

It makes me somewhat apprehensive of trying gluten again to see if I am coeliac. I had skin allergy testing which only tested posative for soy and hayfever related stuff, not wheat. but I was sure I had had a lot of wheat in that meal and I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

The allergist doctor also conceded that he didn't know what caused the hives and that although the IGA result made it 'extremely unlikely' that I was coeliac, if I felt better on a gluten-free diet then I may well be reacting to a protein in wheat or some other gluten culprit.

Should I try it again?

slee Apprentice
slee
Posted

I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

Wouldn't the soy sauce have caused you a problem anyways since you are allergic to soy??

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

Celiac.com Sponsor (A8-M):


Gwen B Rookie
Gwen B
Posted
I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

Wouldn't the soy sauce have caused you a problem anyways since you are allergic to soy??

May be but usually it just furs my mouth up if I drink soy milk. I've had soy yogurt several times since and not had a reaction. I was told that heating/cooking soy milk might destroy the protein to which I react.

May be there was the combination of wheat and soy which triggered soy. I definately felt bad afterward like I have done in the past when I've been glutened.

I've asked my doctor for a (proper) blood allergy test which is supposed to be more accaurate.

Archived

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

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


  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748
    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • 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/   
    • trents
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By trents · Posted

      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...