- advertisement -

antibody tests posivitive= celiac??

Discussion in 'Parents of Children with Type 1' started by sweetkid4, Mar 8, 2013.

  1. sweetkid4

    sweetkid4 Approved members

    Joined:
    Nov 20, 2008
    Messages:
    294
    DS's gastro called today.... and said his anti endomysial antibody and tissue transglutaminase antibody are possitive to suggest celiac. We are scheduled to do an upper endoscopy. I have many questions......especially does this absolutley mean celiac? Could it be a false possitive? Do I need a second opinion? I know there are many threads I could research to help with these questions, but honestly my mind is not geared for searching ATM :eek: ANY help would be awesome!!!
     
  2. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    There was an article recently on the need, or lack thereof, for the biopsy is the correct blood work is done. Ellen might have posted it. I'll see if I can put my hands on it.

    But in short, I'd say that, "yes" is probably means celiac. :( The actual score on the blood work matters, so you'll want to look at that and for a child I probably would want to have the blood work done a second time just to be sure that the lab didn't make any errors and especially if you are considering not doing the biopsy.
     
  3. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
  4. sweetkid4

    sweetkid4 Approved members

    Joined:
    Nov 20, 2008
    Messages:
    294
    Thank you sooo much!!!!:cwds:
     
  5. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Just keep in mind that the biopsy only tests for damage caused by celiac. You can have celiac and not yet have visible damage. Even if the biopsy comes back negative, you still have another problem which is that gluten is elevating your TTG and EMA antibodies, and elevated antibodies can lead to other long term problems. Here's are some articles worth reading:

    http://americannutritionassociation.org/newsletter/avoid-wheat-if-elevated-antibodies-no-symptoms-0

    http://www.celiac.com/gluten-free/topic/87507-negative-biopsies/
     
  6. sweetkid4

    sweetkid4 Approved members

    Joined:
    Nov 20, 2008
    Messages:
    294

    So if the biopsy just tests for damage, should I have it done? I am confused on what to do.... If the elevated antibodies are suggesting Celiac, what would the results of the biopsy change to the dx? If there is damage would a medication be in order?
     
  7. Meredithsmom

    Meredithsmom Approved members

    Joined:
    Oct 14, 2009
    Messages:
    204
    When we were in that boat, I had two thoughts. 1. There will be repeat labs done before an endoscopy is done and 2. An endoscopy will be done before we make another huge lifestyle change. Eliminating gluten is not easy nor is it something I would do if I didn't have to. The repeat labwork came back the same and the endoscopy confirmec celiac.

    We are here for you.
     
  8. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    I do not beleive that there is any "medication" for celiac. The only treatment is to maintaine a Gluten free diet for the affected person or the whole family as a sign of solidarity.

    There are several groups of people and choices to be made:

    There are people that beleive that elavated antibodies is enough of a DX to go gluten free for life.

    Then there are those that want the endoscope to verify damage and then go Gluten free.

    And yet others that wait to go Gluten free until there is visable damage with endoscope testing.
     
  9. Dad of Daughters

    Dad of Daughters Approved members

    Joined:
    May 7, 2008
    Messages:
    421
    We had the same thoughts as listed above. Is the endoscopy necessary or should we just go GF based on elevated antibodies. In the end we went ahead with the endoscopy.

    As far as the process of the endoscopy, I want to say that it went VERY smoothly for us. You'll get guidance from your endo about how to approach BG management. Our DD handled everything very well and she was very young. There was little to no pain for her and the whole process from anesthesia to recovery happened within an hour I believe. We were very pleased with how it went other than the results. :( DD has been GF ever since.

    And to your question about medication. There is no pharma intervention yet, but a GF diet effectively reverses Celiac. The damaged areas usually regenerate and proper absorption processes are restored.
     
  10. sweetkid4

    sweetkid4 Approved members

    Joined:
    Nov 20, 2008
    Messages:
    294
    Thank you....all of you!! I keep coming up with questions and it is so comforting to have all of you to help..:cwds::cwds::cwds:
     
  11. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    If the biopsy comes back negative, and you don't go on a GF-diet, here's what happens:

    1) Antibodies remain in a perpetually inflamed state. Antibodies are the immune system's trigger to attack the GI tract. If the TTG is > 100, there is a 98% certainty that damage will occur at some point, even if it is not evident today (here's one study - http://cat.inist.fr/?aModele=afficheN&cpsidt=16733112 - "Forty-nine of 103 patients had TTG levels of >100 U, with 48 of 49 exhibiting positive biopsy results") At a TTG between 20 and 100, the study found a 50% chance of damage.

    2) Because of #1, if the biopsy is negative, it probably won't be your last. You'll probably get a recommendation to go back again, year after year, until it is confirmed that your child's GI tract has been damaged by celiac - because a high TTG+EMA does mean that they have celiac disease, even if the damage has not yet been evident.

    There are some rare conditions that can fool the 98%-accurate celiac blood test into giving a false positive. However, you can easily resolve the "2% doubt" without the biopsy: Just eat GF for a year, repeat the test, and if the Celiac antibodies drop, then it is celiac.

    The biopsy is good if you feel that you need to see actual damage before putting your child on a GF diet.
     
  12. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    It is true in the early stages of celiac that switching to a GF diet will usually restore any damage to the GI tract itself. However untreated celiac may lead to secondary complication that may not be reversible.

    http://www.umm.edu/celiac/celiac_facts.htm - "Untreated celiac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma."

    And it's so easy to avoid this... just don't eat gluten. Almost every food in the world is GF except for bread, pasta, boxed breakfast cereals, soy sauce, and beer, and there are GF replacement for those.
     
  13. sweetkid4

    sweetkid4 Approved members

    Joined:
    Nov 20, 2008
    Messages:
    294
    "At a TTG between 20 and 100, the study found a 50% chance of damage."



    His TTG was 21
     
  14. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    Yes, at the moment the study was conducted. The 50% without damage may have damage by the next year, which is why you need to keep going back year after year for the biopsy if TTG is abnormal (>10) in case damage appears.
     
  15. Flutterby

    Flutterby Approved members

    Joined:
    Nov 11, 2006
    Messages:
    14,623
    I would not put my kid on a gf diet without the biopsy done... I would just be constantly questioning myself if we didn't do the biopsy, what if the blood work was wrong?
     
  16. swellman

    swellman Approved members

    Joined:
    Jul 30, 2008
    Messages:
    3,544
    What if a biopsy showed no damage?
     
  17. susanlindstrom16

    susanlindstrom16 Approved members

    Joined:
    Nov 29, 2012
    Messages:
    371
    My daughter's TTG was abnormal at the time of her dx, and we had the biopsy done which did not confirm celiac. We are going to continue to monitor her labs. I think that if the blood work continues to come back abnormal, we will consider going gluten free without another biopsy, but we are not GF now, as advised by the doctors. She has never had any symptoms and is growing and gaining weight normally.
     
  18. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Joined:
    Sep 10, 2006
    Messages:
    4,925
    I had a slightly high TTG that was normal range when it was repeated, and it was normal again two years later.
    I think with a number of only 21 it is worth while to at least repeat the bloodwork.

    And btw, I do have GI issues, and I have had two endoscopies for reasons that had nothing to do with celiac, and while they weren't fun, I probably would have another one before going gluten free if my TTG ever went high again, unless I had newish symptoms, because if I had a gluten intolerance then that would be worth treating regardless of endoscopy results.

    But I already went gluten free (for five months, when I was 16 and 17, in the hopes that it would help with some sensory integration issues) and it didn't do much except get me to cook a lot and try quinoa.
     
  19. Darryl

    Darryl Approved members

    Joined:
    May 8, 2008
    Messages:
    4,313
    You could always continue to eat gluten repeat the test a 2nd time (that's what we did) to be sure that the blood work was not mixed up with another patient.

    If the antibodies remain elevated though, there still could be risks in delaying treatment because the elevated antibodies can cause other problems that are more serious than the GI damage. And keep in mind, if the child stops eating gluten, their antibodies will return to normal levels, which can also be confirmed about 1 year after starting the GF diet.

    http://jama.jamanetwork.com/article.aspx?articleid=194747
    "Holmes et al provided evidence that dietary compliance to a gluten-free diet (GFD) reduces the risk of lymphoma and other malignancies in CD."

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378455/pdf/gut00609-0067.pdf
    "The risk is increased, however, in those taking a reduced gluten, or a normal diet, with an excess of cancers of the mouth, pharynx and esophagus, and also of lymphoma... The results are suggestive of a protective role for a GFD against malignancy in coeliac disease and give further support for advising all patients to adhere to a strict GFD for life."

    http://www.biomedcentral.com/1471-230X/7/8
    "An increased mortality due to cancer in patients with CD has been also described [14,15]. There are considerable, but not definitive, evidences that the strict compliance to gluten-free diet is protective against the development of malignancies [16-18] ... the diagnostic delay is a risk factor for developing a malignancy because of the prolonged period of dietary exposure to gluten [15,16] ... This paper confirms that the gluten-free diet is likely to protect from the development of malignancies in CD patients, since higher is the age at diagnosis of CD, higher is the risk of developing a malignancy, Therefore, the importance of a prompt diagnosis of CD is emphasized"
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice