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Celiac: Positive blood test, negative biopsy?

Discussion in 'Parents of Children with Type 1' started by Darryl, Oct 10, 2009.

  1. Darryl

    Darryl Approved members

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    Has anyone had a positive celiac blood test, followed by a negative biopsy?

    If so, what did the doctor then advise that you do?
    Did they want you repeat the biopsy each year?
    Did they say to eat GF, or not?
    If they say it's a "false positive" what is their explanation for the elevated antibodies?
     
  2. amber3cs

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    Yes, Cam first tested positive in May 2008 for celiacs.
    He had biopsies taken in July last year and result came back as "inconclusive". There were some changes consistent with celiacs but not all.
    As he was asymptomatic(apart from a problem with how his food absorbs, that was picked up earlier this year when he went on the CGMS), we decided to wait and see, and repeat the biopsy in a year.
    Since then he has had 2 other blood tests each came back positive but with different levels.

    He is having the gastroscopy repeated in 10 days time, so hopefully this time it will either confirm or rule out celiacs. It would be nice to know one way or the other.
    If you're in this situation I hope it all works out.
     
  3. C6H12O6

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    No 1st hand experience but a possible explanation for a negative biopsy would be if you were on a gluten free diet
     
  4. betty6333

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    Yep, positive ttg 92.
    Biopsy negative

    blood work a year Later was negative...

    They said that the type 1 antibodies can show up in blood work for celiac. I think they said there are only 3 diseases that can cause a false positive and type1 is one of them .

    He could still get celiac at any time, but for now he is growing like a weed and gaining weight very well.

    He only needs blood tests every 3 years bc the biopsy and follow up blood work were both negative.
     
  5. mmgirls

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    i have no first hand experience.but,if you were on a strick gluten diet then couldn't the body "heal" itself and there would be no "edividence" for the biobsy? Isn't this why they say to not start a gluten fre diet until after testing?
     
  6. Emma'sDad

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    That's quite amazing you should mention that. DW got a 35 for Celiac and we're waiting for the biopsy results and we were wondering the exact same thing!!!
     
  7. mmc51264

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    My non-D son had antibodies for celiac (low Iga) but the biopsy came back negative (good thing, he has eating issues and grains were the only thin he was eating). We took him to docter that specializes in autistic kids (they often have gut issues) and she found that Ethan was not absorbing fat and had no good bacteria in his GI system). He has normal growth hormone levels.


    They don't have an explanaton for the low IgA and as long as he is not symptomatic, he eats whatever he wants ( which is limited LOL). He is on a probiotic supplement and graprefruit seed extract to hlep balance his gut bacteria. It HAS helped. He still sees the neurodevelopmental ped and the endo three times a year to check growth.

    What caused you to have the celiac done? Mine has growth issues and issues with using the bathroom (constipation and accidents) We were looking for help anywhere.

    Good Luck!!!
     
  8. heamwdevine

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    I have heard that if you are having a test for celiac you need to eat gluten for atleast two weeks prior to testing.
     
  9. Caldercup

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    But that would only be if they had the blood work done and then went on a gluten free diet -- otherwise, both tests would come back negative.

    If you are planning on the biopsy, you need to continue to eat gluten until the biopsy is completed.
    Eileen
     
  10. Riley'sMom

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    i had blood work done for celiac yesterday for this reason. we have debated going GF for the entire house, and i have some symptoms, but before going GF i wanted to know if it was celiac or not, so that if i did eat gluten, i would know if it was actually harming me or just making me feel yucky. regardless of the results i will probably eat almost entirely GF just because i think i feel better that way.
     
  11. zimbie45

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    Also from what i have been told is this..

    1. if you went GF befor biopsy, then things can heal and you can and mostlikly will get a negative Biopsy..

    2. With the biopsy they only take a very small sample in a very small area, there is always a possiblitiy that they just didnt hit the right spot that is damaged. and just by luck got a spot that has not been damaged yet.
     
  12. WestinsMom

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    I think most biopsies consist of multiple samples...if not, your dr doesn't know what they are doing.
     
  13. Flutterby

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    yes, they should take multiple samples.. I think Kaylee's they took 4 or 5.. I think they usually take more than that.. but they could tell by looking at her through the camera that it was celiac, they took the other samples to make sure there wasn't something else going on and what the damage was.. it should definitely be more than one sample, for the very reason of the possibility of missing something.
     
  14. Darryl

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    In our case, we actually didn't do the biopsy, we decided not to do it since the TTG and EMA were both positive for Celiac both at her T1 dx and when repeated 4 months later. And she had T1 which made Celiac even more likely. Instead of the biopsy, she went on the GF diet, and then the TTG and EMA were normal a year later, which proved that she has Celiac and the GF diet was necessary.

    I asked the question because people are posting about positive blood work, and then being sent for a biopsy, but I can't see why a biopsy is helpful given that the gluten antibodies alone seem to be reason enough to go on the GF diet. So I was wondering what exactly does a doctor tell a parent when their T1 kid tests positive for TTG/EMA but the biopsy fails to find actual damage... do they recommend to continue to eat gluten even with the antibodies elevated?

    A GF diet isn't necessarily a life long committment. We had this discussion with our GI doctor. If a better test for celiac comes along some day, the test could be repeated later time in life if someone must know for "100%" sure that they have celiac (the current TTG/EMA test is supposedly 98% accurate). It seems to me that the biopsy is more to satisfy any lingering doubt than to confirm that a person actually has celiac since the blood test already confirmed that the autoimmune reaction to gluten is happening (the TTG can be elevated for several reasons, but the EMA test is specific to celiac). So I come back to my original question, if the TTG/EMA is positive but the biopsy is negative, what are you supposed to do?
     
  15. Caldercup

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    In terms of "knowing for sure," we found out that Silent Celiac isn't so silent (for us, anyway) after you go GF. My son got glutenized a month in and had some SIGNIFICANT symptoms that day. He now knows that he never wants to have gluten again. :eek:

    When I was reading about Celiac after my son's bloodwork came back so high, I suspected I had it too (unexplained anemia and other symptoms.) So I went GF as a "solidarity" move for my son. Well, I got glutenized and -- MAN-O, MAN -- I never want to live through that again. I told my son's GI and he said he'd be totally convinced I have it and should stay on the GF diet.

    Darryl, we were told by our GI that they wanted to see the severity of the blunting and the valleys between the villi -- that there was a concern that he might also have a lactose intolerance or more significant issues. We went ahead and did the endoscopy and I think it was more of a "mental" surety thing for us. We were able to embrace the GF diet, convinced that it was necessary. Although, why it took one final test to convince us when two others were very high, I don't know. ;)
    Eileen
     
  16. Ali

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    Darryl
    I am sure you know this but it sounds like (from the other posts) you can have "good" and "bad" blood results for a few different reasons and therefore your after results may not be a result of going gluten free. I may have misunderstood your post. What did your gastro specialist recommend? Ali
     
  17. BrendaK

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    You can have a negative biopsy if the samples were not taken the correct way (they have to be cut a certain way in the intestines). You can also have a negative biopsy in a case where the damage is just starting and very minimal, and the biopsy samples miss the parts where there is damage.

    A friend of mine had a biopsy that was diagnosed as negative - she then took the biopsy to a celiac specialist in Chicago and he took one look at the sample and said that it was cut completely the wrong way -- and it was impossible to tell from that sample if it was positive or negative. My friend does indeed have celiac, but the first biopsy missed it because the doctor did not know how to take a sample specific for celiac. Apparently a celiac sample must be cut differently than other samples.

    And, by the way, my friend was negative for the antibodies, and had a negative first biopsy -- she had to go for a second opinion to get an accurate diagnosis.
     
  18. Sarah Maddie's Mom

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    This thread makes clear that I'm really not understanding how a dx of Type 1 might influence a celiac blood test in such a way to give a false positive. Does anyone know? And can Drs drill down into a Type 1 positive for celiac antibodies to determine if it is celiac, or a "by product" of having type 1? Does that even make sense???:confused::cwds: Cause I guess if they could, they would ... nevermind
     
  19. Darryl

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    From all I have read, several autoimmune disorders (including possibly T1) could influence the TTG antibody.

    However, the EMA antibody, that is also part of the celiac panel, is virtually 100% specific to celiac. Here's a reference:

    http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm
    Causes of false positive celiac serologic tests
    The endomysial antibody test (EMA) is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis, diabetes and severe heart failure, as well as arthritis and various autoimmune disorders.
    So, if TTG and EMA are both positive, it seems unlikely to me that the biopsy - an unreliable hunt for signs of physical damage - could actually be used to rule out a celiac dx.
     
  20. Flutterby

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    why do you think the endoscopy is unreliable.. all I've read and heard is that the BLOOD tests are the ones that are unreliable and they use the endoscopy as a more accurate tests.:confused:
     

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