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Type 1 with no antibodies

Discussion in 'Parents of Children with Type 1' started by tresmom, Jul 10, 2008.

  1. tresmom

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    Hi, a quick intro. My name is Teresa and I have two children with type 1 diabetes. My oldest son was diagnosed at 5 and is 15 now. My oldest son is from my first marriage. My ex-husband's mother had type 1 since she was 16 and my ex was diagnosed with type 1 in his 30s so for my oldest to have diabetes was not a huge shock to me. Now, my second son from my current marriage was diagnosed in October with type 1 as well. I took this diagnosis much harder and am still struggling with it. There is no family history of type 1 in my husband or myself although there is a history of type 2 and I did have gestational diabetes with my last pregnancy (although not with his). I guess the other thing that perplexes me is our endo said Steven (my second son) did not test positive for antibodies. He said that he was basing type 1 off of his C-Peptide levels and something else, but I can't remember. It's just been bothering me that he doesn't have antibodies for it and I've yet to meet anyone with a type 1 diagnosis that doesn't have antibodies. I have debated on having my other kids screened for antibodies, especially since Steven doesn't have any, but it is also very hard for me to understand how I have two kids with diabetes now. It just seems there has to be some kind of link to me. I don't know I guess this is rambling here, but I am wondering if anyone else here has a child with diabetes without antibodies being present.
     
  2. deafmack

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    Actually I think a person may or may not have the antibodies present and he probably had the antibodies but they were not there at the time he was diagnosed. From what I understand the antibodies are not present 100% of the time but can come and go. At least that is the way I understand it. Also at the pumping conference I was told the difference between type 1 and type 2 was not antibodies but that a person with type 1 also does not produce a hormone called Amylin, while people with type 2 do.
     
  3. hypercarmona

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    I don't have antibodies, but I'm still classified as type 1. Even with no honeymoon and a nearly normal fasting c-peptide, I'm considered type 1 because I was in DKA at diagnosis.

    My endo explained to me that the antibody test doesn't really help to explain anything if they're absent, because like deafmack said, they come and go. But if they're present, they can sometimes help confirm a type 1 diagnosis. Or they can help to show a "risk" of developing diabetes, but not necessarily a guarantee of developing type 1.
     
  4. Amy C.

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    Type 1 is not diagnosed based on the antibodies as the test is not precise enough. My son is worked on his 11 year of living with diabetes and did not have antibodies at diagnosis.

    Truth be told, the experts don't know why Type 1 developes. There are theories, but none is proved.
     
  5. tresmom

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    I had not heard that before.

    Thank you. I feel a lot better now. I still worry now a lot about my other kids getting diabetes. It has been much harder having 2 kids than 1 with it and I guess sometimes you find yourself looking for answers.
     
  6. kel4han

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    My dad was type 1 in his 30's and no antibodies. I was dx'd at 28 WITH antibodies, which is how they decided I wasn't type 2 :rolleyes: and my daughter was dx'd at age 6 without any antibodies. Weird. You were speaking of the GAD antibodies right?
     
  7. tresmom

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    I'm not sure he didn't tell me which one and I don't know why I didn't ask, but I think that is the one.
     
  8. Twinklet

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    I was/am worried about our younger daughter because of some issues, so had TrialNet labs done. She has no antibodies and I breathed a sigh of relief. Then the Endo told me that about 20% of people with T1D have no antibodies and I still need to watch for signs.
     
  9. Thoover

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    I have the GAD65 antibodies, and will go to Phase II. However I did the GAD65 test twice since they wanted to see if it would go away.. However it didn't I just got the results back yesterday and they were higher then the first test. The trial net did state the even if you don't have the antibodies or you do doesn't mean you will develope type 1 and doesn't mean you won't. They did state with my second go round of blood work another antibodie came up positive but they didn't tell me which one..
     
  10. butterflybeez

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    hi

    I totally know how you feel.
    My four year old daughter was diagnosed with type 1 in February and she too has no antibodies. She is also my second child with type 1. My 9 year old son was diagnosed 8 years ago. I absoloutely know your struggle with the second diagnosis. I am still having a hard time accepting it too. Actually, I let my guard down with her as she went through trial net last July and was negative...six months later, type 1-no antibodies. The only thing going on is her celiac panel. 169...(above 20 is positive). We have the biopsy to confirm that tomorrow morning. More of a formality than anything else, her Dr. is quite certain she has it.
     
  11. jendean

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    I have heard that a lot, actually. I think it is interesting, to say the least. You dont always have to have the antibodies, and having the antibodies does not mean you will have loss of function of a particular organ.
    It is a good indicator. But so much is still misunderstood.
     
  12. trickyw72

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    Antibodies

    Hi,

    I also have two children with T1D. My eldest was diagnosed at age 4 and had the anitbodies. My youngest was diagnosed at 10 months with NO antibodies. I totally understand your grief at the 2nd diagnosis. It was so much harder for me to accept .. partly because of his age, but also because I knew full well what I was dealing with. With the first diagnosis you are so caught up in learning it all that you don't have as much time to think & 'grieve'. The second time around it just hits you like a tonne of bricks :(. This thread sure is interesting, as I certainly don't understand the whole concept of antibodies.

    Tracy
     
  13. 4MyBoys

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    We also have two of three sons with diabetes. My oldest son was never tested for antibodies (diagnosed in ER, 9/1/06 with BG >600, large ketones, but no DKA) because our Endo said it doesn't matter if he has antibodies because up to 20% of people do not have the antibodies they have isolated as indicators. We participated in Trial Net, just because is was rather non-invasive and going on at our local hospital. I had two of the three antibodies they tested for, my husband and two non-D sons were negative for all. !5 months after being negative in TrialNet, my middle son developed symptoms of Type 1 and has since been diagnosed. Again, the Endo did not test for antibodies. -Allison
     
  14. hmmmcormick

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    Morgan was diagnosed in March and tested negative to the antibodies. I questioned this and was told by his endo. that the antibodies testing is more of a screening test than diagnostic. He also has hypothyroid, but I have never asked to test for the antibodies for that. I don't know if they ever have I just know that the diagnosis was made based on TSH levels. He was at 20 something when diagnosed.
     
  15. tresmom

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    Yes, this is exactly how I felt with my 2nd child diagnosed. It makes me feel a little better knowing that other's don't have antibodies. I know this is going to sound ridiculous, but I figure you all here will understand idiotic paranoid mom thinking. I worry that one day they will find a cure and these antibodies will be related to it and that one of my kids will be cured and the other will not which for some reason troubles me. I have absolutely no idea why I have thoughts like that, but I guess it's just mom worry.

    I also worry because I have 4 other children (6 in total) that with 2 kids with diabetes that one of my others will get it now too which is something I never used to worry about. Now, I find myself petrified any time my other kids have anything that closely resembles symptoms. Even being as aware as I was of the symptoms of diabetes I totally missed it with my second son. I couldn't believe in hindsight that I hadn't seen it. Anyhow, I guess this is long and rambly, but I always worry there might some day be a correlation to a cure and antibodies and that and with my second son not having antibodies I don't feel any safety net having my other kids screened for antibodies either.
     

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