This topic contains 57 replies, has 34 voices, and was last updated by Kate Osborne Peter Osborne 5 years, 9 months ago.

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  • #7741
    Kate Osborne
    Peter Osborne
    Keymaster

    Please share how you discovered you have gluten sensitivity…

    • Genetic Testing
    • Antibody Testing (Anti-gliadin, Anti-tissue transglutaminase, anti endomysial antibodies, etc)
    • Biopsy
    • Elimination Diet
    • Other?
    #8544
    Lori Quandt
    dlquandt
    Member

    I used the enterolab test (stool test) and I tested positive for active gluten sensitivity and the auto immune response, and my genes are 2 and 5.

    #8546
    Kate Osborne
    Peter Osborne
    Keymaster

    Gluten Free Society said:

    Please share how you discovered you have gluten sensitivity…

    • Genetic Testing
    • Antibody Testing (Anti-gliadin, Anti-tissue transglutaminase, anti endomysial antibodies, etc)
    • Biopsy
    • Elimination Diet
    • Other?


     

    Enterolab: stool test and genetic.

    I am double 0501

    #8554
    Kate Osborne
    Peter Osborne
    Keymaster

    I am homozygous for DQ2 on both alpha and beta 1 genesYell

    #8586
    Kate Osborne
    Peter Osborne
    Keymaster

    Could you explain the importance of knowing both the alpha and beta portions in the genetic testing?  As far as I know, they only tested the beta allele on mine and our kids’.  I have done some research saying that double DQ 1’s are typically much more sensitive  than even the “regular” celiac’s with DQ2 &/or 8 (to maybe even to less than 5ppm?).  I am finding that this may be the case with me as I am having much trouble feeling healthy again, and not getting the drastic improvements reported my many; any thoughts on this?

    #8587
    Kate Osborne
    Peter Osborne
    Keymaster

    mom24es said:

    Could you explain the importance of knowing both the alpha and beta portions in the genetic testing?  As far as I know, they only tested the beta allele on mine and our kids’.  I have done some research saying that double DQ 1’s are typically much more sensitive  than even the “regular” celiac’s with DQ2 &/or 8 (to maybe even to less than 5ppm?).  I am finding that this may be the case with me as I am having much trouble feeling healthy again, and not getting the drastic improvements reported my many; any thoughts on this?


    The importance has more to do with completeness.  Some people are negative on the HLA-DQ beta1 gene and positive on the alpha 1 gene.  It is important to investigate both genes for this reason.  

    Are you completely grain free?  Have you been tested for other food allergies?  Have you been tested for vitamin and mineral deficiencies.  These are vital components to regaining your health.

    See the video -/video-tutorial/regaining-your-health-again/

    This may give you some insight on accelerating your results.Laugh

    #8615
    julie huerta
    juliegirl
    Member

    going to my primary care doc ,do i just ask her to draw my blood for a test labeled HLADQ? than what ?Confused

    #8616
    Kate Osborne
    Peter Osborne
    Keymaster

    Julie,

    Have your doctor measure both your HLA-DQ alpha and beta 1 genes.  Your doctor should be able to help you, however; if he/she is not familiar with interpretation of genetic test results, watch the video tutorials on this site on genetics.

     

    All the best,

    GFSSmile 

    #8627
    Liz Ramsey
    Maifaire
    Member

    Fecal Anti-gliadin IgA    267 Units   (Normal Range< 10 units 

    Fecal Anti-tissue Transglutaminase IgA    107 Units   (Normal Range< 16 units 
     

    I diagnosed myself initially, read some books then found a PA who had me test with Entero Labs.

     

    Quantitative Microscopic Fecal Fat Score    1315 Units   (Normal Range< 443 units
     
    Fecal Anti-casein (cow’s milk) IgA    57 Units   (Normal Range< 16 units

    HLA-DQB1 Molecular analysis, Allele 1    0301   

    HLA-DQB1 Molecular analysis, Allele 2    0503   

    Serologic equivalent: HLA-DQ   3,1  (Subtype 7,5)
     
     “….gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

    #8641
    Kate Osborne
    Peter Osborne
    Keymaster

    Maifaire,

    You’re the first person I’ve ever seen with a fecal fat score higher than mine (not that I’ve seen that many).  Mine was 994, however the normal range on my report states less than 300 as normal (wonder why they would be different?).  Are you losing weight unwantedly?  Just curious because as I said, I’ve never met anyone else with high malabsorption.  I’ve lost about 30 pounds too much and I was on the small side to begin with, I do not like it at all.  I eat everything I can (which I am very limited being gluten, grain, egg, dairy, soy and yeast free) and have only recently stabilized, still working on gaining.Cry  Any tips?

    Jackie

    #8642
    Liz Ramsey
    Maifaire
    Member

    Hi Jackie,

           I’ve never met anyone else who has had this same testing.

    When I received my results via e-mail (before consulting with my PA) the lab had left off the “normal range” figures. I wanted to give my family an idea of how sick I was so I copied some normal range figures from internet not knowing the figures could evidently be different case per case.

           I had this testing done from enterolab in April of last year. I had also lost 30 lbs pretty quickly– I was about 142 lbs on 5’7 frame to begin with. It was terrifying to become so ill when I had always thought of myself as healthy, eating pretty much anything I wanted. When I lost the weight I was embarrassed by others remarks about it and kept telling everyone I was trying to gain most of it back.

          I also am quite resticted in my diet–it seemed that on top of the intolerance to gluten and casein I was suddenly allergic to everything. I am so much better now but it has taken about a year and 1/2 to gain wieght. Are you able to eat chicken? Avocados, steamed asperagus, cucumbers, apples, yams, most fruits have all helped me and I have recently intorduced grass fed meats (living in a small town I have to order the free range).

           I wish you the best in getting well and remember it does get better.

    Maifaire

     

          

    #8693

    I am self diagnosed. I do need to get tested. But it was trial and error how I learned. I listened to Elizabeth Hasselbeck on “The View” who has celiac disease and as I heard her talk, I realised “That sounds like me!”.  So I went off grains and eating gluten and found I then felt good!  My insides didn't swell up and everything else. Grains really made me sick before.

    #8702
    darlindeb
    darlindeb
    Member

    I was not officially diagnosed when I went gluten free 10 yrs ago this month.  2 yrs ago, my neuro had gene testing done, I have double DQ1..0601, 0603.  Being double DQ1 is a double whammy of gluten intolerance, plus one of the genes is prone to neuropathy, which I also am diagnosed with small fiber/sensory neuropathy, alone with, sleep apnea, chronic fatigue syndrome, raynauds, gluten ataxia, and still have malabsorption issues.

     

    I am totally grain free, do not use any sugar or sweeteners other than stevia, no red meats (fat content too high), no shellfish, no nightshades, no cruciferous veggies….I am also now on a candida diet, which has finally helped me to lose weight.  I didn't realize I was being glutened all those years by CC foods…I find that nearly all “gluten free” labeled processed foods contain gluten in a level I can not handle.  I do not eat any processed foods any longer, and do feel better than I have in years.  Now my boss feels I am having thyroid issues and asked me to see my PCP.  He is an optometrist and says my drooping eyelids are a huge indications of thyroid issues.  We will see.  I am nearly 55, had a hysterectomy 3 yrs ago..definitely at the thyroid age.ConfusedI have read that thyroid and headaches have a big connection, and I do have chronic headaches, never go away..maybe thyroid is the problem with the head.  I have tried everything else with no help for the pain.

    #8703

    darlindeb said:

    I was not officially diagnosed when I went gluten free 10 yrs ago this month.  2 yrs ago, my neuro had gene testing done, I have double DQ1..0601, 0603.  Being double DQ1 is a double whammy of gluten intolerance, plus one of the genes is prone to neuropathy, which I also am diagnosed with small fiber/sensory neuropathy, alone with, sleep apnea, chronic fatigue syndrome, raynauds, gluten ataxia, and still have malabsorption issues.

     

    I am totally grain free, do not use any sugar or sweeteners other than stevia, no red meats (fat content too high), no shellfish, no nightshades, no cruciferous veggies….I am also now on a candida diet, which has finally helped me to lose weight.  I didn't realize I was being glutened all those years by CC foods…I find that nearly all “gluten free” labeled processed foods contain gluten in a level I can not handle.  I do not eat any processed foods any longer, and do feel better than I have in years.  Now my boss feels I am having thyroid issues and asked me to see my PCP.  He is an optometrist and says my drooping eyelids are a huge indications of thyroid issues.  We will see.  I am nearly 55, had a hysterectomy 3 yrs ago..definitely at the thyroid age.ConfusedI have read that thyroid and headaches have a big connection, and I do have chronic headaches, never go away..maybe thyroid is the problem with the head.  I have tried everything else with no help for the pain.


     

    What is a candida free diet? What all can you eat on that? And what are crucerfix veggies?

    #8705
    darlindeb
    darlindeb
    Member

    Cruciferous veggies are cabbage, broccoli, cauliflower, brussel sprouts.  A group of very gassy veggies.

     

    Candida diet is a diet with no sugar or sweetner, no dairy and such that kills the bad bacteria in your system.  Some of us have too much of this bad bacteria in our bodies and stay very sick.  Just put “candida diet” in your search and click on it.

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