Home of Gluten-Free Society Forums All Gluten Free All The Time Celiac Test was Inconclusive..what now?

This topic contains 9 replies, has 5 voices, and was last updated by Kate Osborne Peter Osborne 8 years, 7 months ago.

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  • #7958

    Hi. I am a new member and have been looking into Gluten-Free diets for the last couple fo months I am 42 and suffer from Lupus SLE  which includes arthritis (mild to severe), body aches, sores, fatigue, blood clots , pleurisy, rayanud's disease etc. I have been on prednisone for 13 years (mostly on rather than off) and I am also on immunosuppresants (Imuran) and Plaquenil as well as warfarin. I am tired of being sick and tired and pray that going Gluten Free will help with some of my symptoms.

    I recently had a Celiac test done by my rhematologist (at my request) and it came back “inconclusive”. She told me “trying a gluten-free diet won't hurt”.  I agree but I would like to know 100% if gluten snsitivity is going on.  Are there any other tests I can request? I can not afford the genetic testing or I wouldl go this route. I would also like to get my 8 year old son tested as he suffers from ADHD. Any way for me to test for this by my Doctor?

    Thanks so much,

    Michelle

    #9052
    Kate Osborne
    Peter Osborne
    Keymaster

    Genetic testing is your best route.  You can ask your doctor to perform Hla – DQ testing.  The problem will be that standard labs only look at and report celiac disease genes.  If your genes are celiac negative it does not mean that they are not gluten positive.

    #9069
    Polina Conrad
    Polina
    Member

    Hi Michelle,

     

    My genetic tasting for gluten was positive and I am trying to follow the true gluten free diet for 4 months now, I do have an autoimmune condition like you and am responding well to the gluten free diet although not entirely healthy. I did have a bad attack the beginning of the year and had to be on prednisone also, this drug is awful, about killed me.

    My son also has ADHD and just like you I am trying to save money for his genetic tasting as well, chances are he is 50% gluten intolerant. He does respond well to a whole some diet of organic food, I avoid anything artificial, dinners are mostly meat and vegetables. My main concern for him going gluten free will be not eating bread. I am still experimenting with the gluten free breads and treats from Dr. Osborne's book. 

     

    #9071
    Lori Quandt
    farmwife67
    Member

    I know this is a little expensive, if I remember right it was 200 or 300 dollars. Enterolab is what I had done and you can purchase just certain parts of the test.  It is a stool test and cheek swab (genetic test).  The stool test gives you other info.  You could look and enterolab.com and see if they offer just the genetic test.  If you do yourself first and find out that you have 2 positive genes then you don't have to test your child because you know they get one of those two genes from you.  I have a celiac gene and a gluten sensitive gene, so I know all of my kids without doubt shoud NOT eat gluten.  Unfortunately, we found out too late and they are addicted.  I would get him on a gluten free diet ASAP.  It will be much easier now than it will be as a teenager.  Good luck, if you need anyhelp with that website let me know.

    Lori

    I know there are other good sites for genetic testings too, but that is the only one I had experience with.

    #9072
    Lori Quandt
    farmwife67
    Member

    Just looked it up for you, it looks like the gene test alone is only 149.00.  NOt a bad price for genetic testing!

    https://www.enterolab.com/StaticPages/TestInfo.aspx#gene_gluten

    #9073
    Jacqueline Scarbrough
    Jackie Scarbrough
    Participant

    I was going to post the same thing!  I also did enterolab for my genetic test (among others).  I was very happy with finding out the results (like you said, just to KNOW).  It does give you an explanation also and you can call them with any questions afterward which I took advantage of.  The nice thing about the genetic test alone, it is only a cheek swab, very easy.  I would highly recommend it. 

    #9075
    Kate Osborne
    Peter Osborne
    Keymaster

    I used to use enterolab.  The problem with their genetic test is that they only test for one of the known genes (HLA-DQ B1).  GFS tests for both B1 and A1 genes via cheek swab.

    http://www.glutenfreesociety.org/genetic-testing-for-gluten-sensitivity/

    All the best,

    Dr. OSmile

    #9077
    Lori Quandt
    farmwife67
    Member

    My genes via enterolab were 2 and 5.  I thought that meant it was testing for two genes.  Maybe I'm not understanding something.  My husband had two also, I can't remember off hand what his were, one was gluten sensitive and one was actually not gluten sensitive or celiac gene. (I was surprised about that).

    #9079
    Jacqueline Scarbrough
    Jackie Scarbrough
    Participant

    Dr. O, I see what you mean about there being a more and less thorough test, but could you (attempt) to explain to us lay people the benefit of the more extensive analysis. 

    1.  Is it possible that someone could test negative for both the celiac and the gluten sensitivity genes, say through enterolab's type of testing (only the B1 portion), but still be positive on the A1 portion? 

    2.  If someone is positive on one or both of the B1 portion of their genes, then what additional significance does knowing the A1 portion have?   

    Thanks!

    #9080
    Kate Osborne
    Peter Osborne
    Keymaster

    Hi Jackie,

    1. It is possible that someone could test negative for both B1 alleles (gene pieces) and be positive on the A1 gene. 

    2. The main reason for looking at both A1 and B1 is to avoid the possiblity of false negative findings. (i.e. B1 is negative and A1 is positive).  If someone has already been identified as positive B1, the significance of knowing the A1 gene alleles has more to do with determining family risk.  The more genetic pieces, the greater likelihood they will be passed down to children, the greater odds that the parents and siblings could be gluten sensitive.

    Hope that helps clarify,

    All the best,

    Dr. OSmile

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