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Still anti body and GAD negative 6 years later

Discussion in 'Parents of Children with Type 1' started by Ivan's Mum, Apr 18, 2012.

  1. Ivan's Mum

    Ivan's Mum Approved members

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    Hi Everyone, this is something I don't know much about but endo ordered more blood tests for Ivan to see if he is still anti body negative. Some of the results are in and looking at his letter it says that he remains anti body negative, (GAD,IA1, and ICA) and that he's sending off blood for DNA storage and looking at MODY gene testing (but that he expects this to be normal).

    My question is that if he is antibody negative as above, how can he have type 1?
     
  2. kiwikid

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    On the basis of these findings, we believe that diabetes characterized by the absence of glutamic acid decarboxylase antibodies and low glycosylated hemoglobin values should be classified as nonautoimmune, fulminant type 1 diabetes, a subtype of idiopathic (type 1B) diabetes. :eek: :confused: That doesn't help huh ??
     
  3. TheFormerLantusFiend

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    Type 1 diabetes is defined as diabetes whose primary cause is an inability to make insulin, rather than an inability to use insulin efficiently. More than 90% of cases are associated with antibodies (although if you only test the ones he tested, it's only about 80% - if only those three are tested and are negative, it's still probable that he has another positive antibody- one of the zinc ones, maybe). Autoimmune type 1 diabetes is subtyped 1A.

    Non-autoimmune diabetes usually doesn't have a cause that we can find (unless by cause you mean a lack of islet cells or visible damage to them that's on biopsy or autopsy, or you include the people with pancreatic agenesis or who have had pancreatectomie or acute pancreatitis). On average, people with antibody negative diabetes are more likely to have family members with diabetes, are more likely to have lower A1cs, are more likely to have very young onsets, and are more likely to have certain syndromes that include diabetes, and to have various genes that cause monogenic diabetes (some MODYs, DIDMOAD, etc). They are less likely to have other autoimmune diseases.
     
  4. mysweetwill

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    My son also has no autoantibodies, he is taking part in the University of Chicago study on monogenic diabetes. Our first endo told me it doesn't matter whether my son is a monogenic or idiopathic diabetic as he still needs insulin. It totally matters to me. He has a long life to live with diabetes, and knowing whether it is indeed a genetic mutation may impact his future (his children's odds, research and studies he may participate in or at least follow, advances in different areas). For example, I have been wondering lately, whether islet cell transplants are more successful in nonautoimmune diabetics.
     
  5. ChristineJ

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    Some monogenic diabetes can be treated with oral medication, so it's not necessarily true that he would still need insulin. If he does have monogenic diabetes, and it"s one of the forms that can be treated with pills, that would be important information to know.:)

    Christine
     
  6. Ivan's Mum

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    I am still scratching my head. I'll have to wait for the MODY test to come back, if that is negative I will still be asking questions, just to say he is type 1 and do not further testing is now not an option.
     
  7. Ivan's Mum

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    Diabetes at 4.11 months, no family history of either type and a high a1c which keeps going up even with good numbers 80% of the time.
     
  8. Andy'sMom

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    Andy also was neg for antibodies and we had him tested through Univeristy of chicago and they found a genetic mutuation that they believe caused his diabeties, so not autoimmune disorder. We are still waiting to hear more about it. He was dx at 10 months. It's not MODY and he still needs insulin, but it's good information to have. I recommend additional testing beyond MODY if that test comes back inconclusive.
     

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