Both GAD 65 and islet cell antibody tests came back positive. Now what?

I was expecting this but now that it’s actually true I’m not sure what to do. My endo messaged me today to tell me the results and said we would talk more about it at my appointment next week. My BGs the past 2 days were amazing and then today I spiked up to 225 hours after I had eaten. I never know what it’s going to be like. What do I do now?

First try to get a CGM, it’s the best way to know 24/7 what your blood sugars are doing. I honestly would get some fast acting insulin to start using in some very tiny doses so that you can correct when needed at least. Some doctors here like to prescribe just a basal at first.

But you might as well start getting used to learning to use insulin. It will help along the way and eventually you have to have it anyways, You are in what we call the honeymoon period. You are still making some and that will slowly go away until you stop and that can take years. So it will be irregular, some days your pancreas will do better and on other days, not so much. So that insulin will help you to make some adjustments, besides the fact your pancreas vacay days will happen more and more as time goes on,

There is some thought that taking insulin early might also help protect your pancreas longer. Some oral medications might help at the beginning and of course your diet.


I whole-heartedly agree with @Marie20’s suggestion to get a continuous glucose monitor to start to acquaint yourself with your unique glucose metabolism. It’s especially helpful for you to understand and learn how your body’s glucose function works.

Try to take the longer view of things. There is a lot to learn, but you have the rest of your life to get this right. Don’t offload the full responsibility to figure out your custom management plan to your doctor. Your doctor, even if s/he is the best endo with the best communication skills, will not be present and focussed 24/7 on your needs.

Commit to becoming the expert on your diabetes, as in obtaining PhD insight into how your glucose metabolism ticks. You don’t need to learn everything at once. Try to learn a little bit every day and after many months, you will surprise yourself about how much you know.

I suggest that you survey the many books that are aimed at managing diabetes well by teaching about how insulin works and how to use it. Check out Think Like a Pancreas by Scheiner and Using Insulin by Walsh. A book aimed more at the psycho-social aspects of living with T1D that I found helpful is The Book of Better by Eichten. His tagline that, “Life with diabetes can’t be perfect, make it better,” is a good mind-space to build on.

Your doctor can be a good ally but is not the quarterback of your team. That is your position. Embrace that attitude now and it will prevent much disappointment later. The sooner you own your diabetes, the better off you’ll be.

Be kind to yourself. This diagnosis is a shock to most of us and adjusting to it can take years. Try to avoid spending too long in any of the phases of adjusting to this new reality and the grief that accompanies it.

It’s not your fault that you ended up here but sometimes people spend much too long in denial or bargaining with this new reality. If you need to talk with a professional to speed this process, don’t be ashamed to do that.

Participate in places like this as you can learn much from those of us who walked this path before you. We’re willing to answer your questions and you’ll be surprised at how soon you will be willing to light the path of those who walk this way behind you. Helping others is part of healing that can help you.

Good luck! Sorry to welcome you to the club but if life demands that you play this game, you may as well learn to play it well.