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

Results Are In---confused!


*Donna*

Recommended Posts

*Donna* Newbie

I posted a couple weeks back wondering how long blood tests take...well I went to see my dr. today and I was told my bloodwork was negative for Celiac. He said something about my number was 17 and anything below 20 was normal. From what I read on here anything below 10 is normal??!! I am in Canada and I am assuming it is different here than the states? Anyone from Canada have the bloodwork done and what are the ranges? I was so sure it would be positive as I have almost every symptom possible! I am thinking of trying the gluten-free diet anyways to see if it helps. Are there any other diseases that would have all the celiac symptoms the same? I had my thyroid checked and it was normal. The only other thing I can think of is lactose intollerance. My dr. is telling me it is IBS--but I'm not buying that! <_<

~Donna


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Donna,

Each lab is different. Enterolab, Prometheus, LabCorp, etc etc etc. Each has different ways and different scores. You'll need to get the full copy of the tests (not just have them read them...physically go pick them up!). That will help, because you'll see the reference ranges. Plus, if you have questions, you can post your results/ranges here and we can help. Definitely get a hold of them ASAP!

You may not have Celiac and may be gluten intolerant. Or it could be a host of other things (including other food intolerances). I would suggest trying the gluten free diet and seeing what happens.

As soon as you get your tests, let us know!

Laura

2kids4me Contributor

Symptoms for celiac are extensive and yes they can mimic other diseases, food allergies and intolerances. You can be gluten intolerant and/or have lactose intolerance, or food allergies that would create malabsorbtion.

Each lab has its own set of normal values - it varies from lab to lab depending on the type of test and equipment used.

My daughter was borderline for her blood results - yet positive on endoscopy for damage.

Try the gluten-free diet if you would like and see how your symptoms respond. If they persist - then eliminate casein or lactose..... experiment to see which elimination results in the most improvement.

Ask your doctor about testing for food allergies as a possible cause for your symptoms

LKelly8 Rookie
...well I went to see my dr. today and I was told my bloodwork was negative for Celiac. He said something about my number was 17 and anything below 20 was normal. From what I read on here anything below 10 is normal??!! ~Donna

Just to echo what others have said - ranges differ lab to lab, there are so many (over 200) possible symptoms with celiac that it's been called "the great chameleon", and get a copy of that bloodwork.

I had negative bloodwork twice, years apart, before being dx by biopsy. <_<

celiacgirls Apprentice

My daughter had negative blood tests 3 or 4 times over the years but responds positively to the diet. I did have her tested by Enterolab which was positive but dietary response is just as definitive.

Terch Apprentice

Hi Donna,

My doctor didn't even do the bloodwork he just did an endoscopy. By the way I am Canadian as well. I know that our cholesteral numbers are very different than The United States so I think maybe that these tests might be as well.

I am going to see my GI on friday and I am terrified that it won't be celiacs, that it will be negative or worse that it will be something much more serious. Who ever thought I would want to have this illness...it seems that if it isn't celiacs they will go back to the ibs diagnosis and quite frankly I know it's not what I have.

Anyway after Friday depending on what I hear I will likely being going the enterolab route, you may want to think of that.

Good Luck

Helena Contributor

Hi Donna, well, I can't tell you much about the numbers . . .but I'm Canadian and I was tested in Toronto. It would matter too which test you are talking about---there is the EMA one and the tTG one and tests for antigliadin antibodies. My GI doctor ran all of them for me, but my sister was tested for EMA antibodies only. If you only had one test, you might want to ask about getting others done.

My doctor told me that my anti tTG antibody test was "slightly positive" so I guess that confirms what you've said---it isn't a black and white test. There's a range that is considered "normal" apparently.


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



Celiac.com Sponsor (A8-M):



Terch Apprentice
Hi Donna, well, I can't tell you much about the numbers . . .but I'm Canadian and I was tested in Toronto. It would matter too which test you are talking about---there is the EMA one and the tTG one and tests for antigliadin antibodies. My GI doctor ran all of them for me, but my sister was tested for EMA antibodies only. If you only had one test, you might want to ask about getting others done.

My doctor told me that my anti tTG antibody test was "slightly positive" so I guess that confirms what you've said---it isn't a black and white test. There's a range that is considered "normal" apparently.

Hi,

I was wondering when you started to feel better on your gluten free diet. I have been 4 weeks without any real improvement.

Many thanks.

Helena Contributor

Well, it's hard to say because I've been on a "gluten light" diet for several years. (For the past couple of years, all the gluten I was getting was in oats which I ate on the rare occasion. I did have barley and rye a few times too.) But I did have to go back on gluten for the purposes of the biopsy (until my doctor suggested we cancel for various reasons) . . . I don't react as severely as a lot of people on these boards do. I have mild GI symptoms. Plus I feel kind of tired after eating gluten---I'm over that in about a day I'd say, so I noticed a difference right away. But I've heard that it takes some people awhile. Maybe you should start a new thread on this topic---I'm probably not the best person to ask.

KarenLee Rookie
Just to echo what others have said - ranges differ lab to lab, there are so many (over 200) possible symptoms with celiac that it's been called "the great chameleon", and get a copy of that bloodwork.

I had negative bloodwork twice, years apart, before being dx by biopsy. <_<

My GI Dr. said that if my Prometheus blood test comes back normal(I hope to get results back tomorrow), then there's no need for a biopsy, that we will assume that I don't have Celiac. If it comes back normal should I insist on a biopsy, too? I have read that so many people have neg. blood tests, but had pos. biopsy results. Oh, I also sent in the test to Enterolab a few weeks ago...

Thanks

Mayflowers Contributor
You may not have Celiac and may be gluten intolerant. Or it could be a host of other things (including other food intolerances). I would suggest trying the gluten free diet and seeing what happens.

According to Dr Fine at Enterolab, it's all celiac disease. If you're gluten intolerant, you have celiac disease. There are just varying degrees of gluten intolerance.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748

    Kelly Hannon
    Newest Member
    Kelly Hannon
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.