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 Test Results?

abby03

Recommended Posts

abby03 Contributor
abby03
Posted

Back in January I got the blood test done for Celiac but wasn't able to get copies of my results until yesterday. Shortly after my blood test, I had an endoscopy. The endoscopy initially showed damage that apparently looked like Celiac but the the biopsy came back negative. About two months ago my GI doctor went ahead and put me on a gluten free diet and said that I had a positive blood test (I was told differently by my regular doctor, who was the one that ordered the tests.), all the symptoms, and that the endoscopy looked like Celiac even though the biopsy was negative. She basically told me that I had Celiac and to try the diet. So for the past 2 months or so I've been gluten free and feel somewhat better but not completely. I went to a nutritionist and she was confused because my primary doctor wrote "positive gluten intolerance" on my record while my GI apparently had Celiac written down. That left me confused so I got the results for myself and am hoping that someone on here can tell me what they mean and if I even need to be on a gluten free diet. Here they are:

Deamidated Gliadin Abs, IgA: Result: 14 Normal Range: 0-19 Normal

Deamidated Gliadin Abs, IgG: Result: 27(Abn: H) Normal Range: 0-19 Weak Positive

t- Transglutaminase(tTG) IgA: Result: 2 Normal Range: 0-3 Negative

t- Transglutaminase(tTG) IgG: Result: 4 Normal Range: 0-5 Negative

Endomysial Antibody IgA: Result: Negative

Immunoglobulin A, Qn, Serum Result: 177 Normal Range: 61-348 Negative

From what I can see, I only have one weak positive out of the whole panel. And from what I read, that's one of the least accurate tests. And I have a negative biopsy. Do I even need to be eating gluten free with these results? Do I have Celiac disease or not? Thanks for any help you can give me!

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

Celiac.com Sponsor (A8-M):


Hornet Rookie
Hornet
Posted

I am not an MD and I believe you need to get your medical ppl together or see a different GI doc for a second opinion. I can't speak for others who will reply, but I would not change anything until you meet with your doc and discuss what is better, what isn't and get these questions resolved. Good luck.

abby03 Contributor
abby03
Posted
  • Author

Thanks for replying. :)

I don't think switching doctor's will be necessary. I like my GI doctor and I'm sort of stuck with my regular doctor anyway. I've already had all the tests done and gotten results. Now I just need someone to interpret them and help me figure out if I have Celiac or not. I know that some people on here are good at interpreting test results and knowing what each test means so hopefully someone can give me an answer!

MitziG Enthusiast
MitziG
Posted

Actually, the DGP is a very specific and reliable test. It is not uncommon to have the majority of bloodwork come back negative. Antibodies are mostly in the gut, not the bloodstream.

My guess would be that you are in early stages of the disease. Celiac is patchy, and easy to miss on a biopsy. The fact that your GI saw visible damage is a big clue though. Had the disease progressed, eventually your bloodstream would become mmore saturated with antibodies.

Healing takes time. The fact that you have noticed some improvement is also telling. Many people take 6 months or more beefore they see significant improvement.

So, in answer to your question- yes, you have celiac, and yes, you do need to be on the gluten free diet for life.

abby03 Contributor
abby03
Posted
  • Author

Actually, the DGP is a very specific and reliable test. It is not uncommon to have the majority of bloodwork come back negative. Antibodies are mostly in the gut, not the bloodstream.

My guess would be that you are in early stages of the disease. Celiac is patchy, and easy to miss on a biopsy. The fact that your GI saw visible damage is a big clue though. Had the disease progressed, eventually your bloodstream would become mmore saturated with antibodies.

Healing takes time. The fact that you have noticed some improvement is also telling. Many people take 6 months or more beefore they see significant improvement.

So, in answer to your question- yes, you have celiac, and yes, you do need to be on the gluten free diet for life.

Thanks for the help! I must have gotten the DGP confused with another test.. is it this one that has 99% accuracy? I read that one has 85% accuracy and I thought that was the one I tested positive in.

And just to be sure, false negatives on blood tests are extremely rare, correct? It probably sounds like I'm trying to deny that I have celiac or something and I'm not- I just want to be 100% sure that I have it. I've done pretty well with the diet for the past two months and have been lucky to only have a few rough days. I've actually enjoyed eating healthier and learning new recipes and such! Anyway, thanks again for the help! :)

beachbirdie Contributor
beachbirdie
Posted

From what I can see, I only have one weak positive out of the whole panel. And from what I read, that's one of the least accurate tests. And I have a negative biopsy. Do I even need to be eating gluten free with these results? Do I have Celiac disease or not? Thanks for any help you can give me!

The Deamidated Gliadin is actually pretty accurate. There is an older version of the test for gliadin antibodies, that is the one that's not so specific.

I think a positive DGP means celiac.

Also...the term "positive gluten intolerance" is sometimes used interchangeably with "celiac". Though you apparently didn't have the villous atrophy, you do most likely have celiac. You just haven't been badly damaged yet. Either that, or they didn't do enough biopsy samples...that happens a lot.

Do you have a copy of the biopsy report? Reading for yourself can tell you a lot more than just hearing "negative" from the doc.

Yes, you are reacting to gluten and need to be gluten-free.

Oh brother, I can see there were a lot of us here all at once, LOL. Sorry for the extraneous info! :ph34r:

abby03 Contributor
abby03
Posted
  • Author

The Deamidated Gliadin is actually pretty accurate. There is an older version of the test for gliadin antibodies, that is the one that's not so specific.

I think a positive DGP means celiac.

Also...the term "positive gluten intolerance" is sometimes used interchangeably with "celiac". Though you apparently didn't have the villous atrophy, you do most likely have celiac. You just haven't been badly damaged yet. Either that, or they didn't do enough biopsy samples...that happens a lot.

Do you have a copy of the biopsy report? Reading for yourself can tell you a lot more than just hearing "negative" from the doc.

Yes, you are reacting to gluten and need to be gluten-free.

Oh brother, I can see there were a lot of us here all at once, LOL. Sorry for the extraneous info! :ph34r:

I actually just read my first post and realized I made a typo. The "positive gluten intolerance" should be "possible gluten intolerance." My bad.

Also, I do not have a copy of the biopsy report. All I have is the paper they gave my parents at the hospital when I was still drugged up haha. That's the paper with pictures and the one that says they saw damage and suspected Celiac.

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

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

yes, the DGP IgG is the most specific test around, after the EMA test.

GFinDC Veteran
GFinDC
Posted

HI Abby,

RE: your question about false negatives, yes, there are false negatives. False positives are rare but false negatives are not. The antibodies to your gut (celiac antibodies) are mostly in your gut where they do their work. They aren't aimlessly floating around the blood stream, they have a job to do and they go do it. Actually most of them are created in the gut to begin with. Your gut is a front line defense mechanism in protecting you from invading microbes, and it has lots of immune cells to fight that battle. If it didn't we would be in bad shape with eating all those little ugly buglies in our food each day. The stomach has hydrochloric acid to stop some of them but it isn't enough to kill all of them. That's why probiotics work.

Here is some reading material for new people and older people too.

Open Original Shared Link

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

Archived

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

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


  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748
    Lostcha
    Newest Member
    Lostcha
    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
      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.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.