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Karenmartin25
Total Posts: 15
Registered on: ‎04-02-2012

Gad65 Antibody - explanation needed

[ Edited ]

Can anyone give me a clear explanation of GAD65 Antibody test results? My daughter's was calculated as a 4. We are in the early stage of Type 1 from what I understood from her pediatrician but he did not elaborate. We meet with an endocrinologist this week. Online information regarding this lab work is confusing.

Karen
Mom to a brave 10 yr old daughter who was diagonosed as honeymooning with T1 (new terminology I have learned) March 21, 2012. Currently monitoring blood levels before every meal and at night before bed and trying to learn as much as I can so that I am prepared to take on this new chapter in our lives.
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katies_dad
Total Posts: 412
Registered on: ‎11-08-2009

Re: Gad65 Antibody - explanation needed

[ Edited ]

Karen,

 

I can only find medical textual references (blahhhh), the best summary is that GAD65 is used to distinguish between Type 1 and Type 2 diabetes.  Basically, if your are running high BG's and positive for GAD65, your Type 1 or headed that way.  If high BG's and no GAD65, then your type 2.  At least that is how I read it.  Since both forms give the same symptoms (high BG's) it looks like this is another scientific way to a definative diagnosis.

 

I should add that the treatments differ so greatly that is is critical to know which one it is.  Since not all Type 2's are overweight (though the media would make you think that way) and not all type 1's are skinny, weight can't be the determing factor (admitedly, their are other tests, think of the GAD65 as one voting member of the panel).  Type 2's can often improve the effectiveness of their own insulin with medications, but that is not possible for a type 1, since they don't make any / much insulin.

Katies Dad

Katie diagnosed T1 July 2008, pumping with Animas Ping since June 2009.
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Karenmartin25
Total Posts: 15
Registered on: ‎04-02-2012

Re: Gad65 Antibody - explanation needed

[ Edited ]

That is all I could find too. We are meeting with the endocronologist this week so I can ask all my questions. I just wanted to do a little research before then so I don't sound so green about all this. I am realizing how much I didn't know about eating healthy, carbs, etc and all the testing and results.

 

If anything "good" can come from this is that my whole family will eat healthier.

 

I am happy to have found all of you online. I feel I have a place to go for support and I am greatful.

Karen
Mom to a brave 10 yr old daughter who was diagonosed as honeymooning with T1 (new terminology I have learned) March 21, 2012. Currently monitoring blood levels before every meal and at night before bed and trying to learn as much as I can so that I am prepared to take on this new chapter in our lives.
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katies_dad
Total Posts: 412
Registered on: ‎11-08-2009

Re: Gad65 Antibody - explanation needed

Eat "normal".  There is nothing you have or haven't eaten that can cause or prevent Type 1.  For sure, you will be more food concious, you'll know which meals are higher in carbs and which are lower.  You'll also learn (have it confirmed in practice) that sugar = bread = pasta as far as carbs are concerned they all have the same effect.  Of course there are faster carbs and slower carbs (how long to digest) but in the end 1 gram of carbs is 1 gram of carbs.

 

A healthy diet is always a good thing.  The best way I know to eat healthy is to eat a little bit of everything and not too much of anything.  Steak, ice cream and french fries all have their place along side beans and corn and peas and chease.  Don't forget that carbs are essential to human development, you shouldn't reduce them and absolutely can't elliminate them from a childs diets (an adult can cut back, but not eliminate).

 

As to fast and slow carbs, don't automatically think slow is better.  Insulin works at a fixed rate (slow start, strong middle and finish for Katie).  If you eat really quick carbs the BG gets out ahead of the insulin and you end up high at the 2 hour mark, but come back to target later, maybe neading a correction.  If you eat really slow carbs, then the insulin can outpace the carbs and you end up low 2 hours in (can be low enough to require action) and then on target to high on the back end.  It's a learning game.  Fortunately it is not a really hard game.  Tedious for sure, my wife takes great notes and is always adjusting to accomodate the previous results for a certain food.

Katies Dad

Katie diagnosed T1 July 2008, pumping with Animas Ping since June 2009.
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Karenmartin25
Total Posts: 15
Registered on: ‎04-02-2012

Re: Gad65 Antibody - explanation needed

I've always been a healthy weight with a good metabolism and never had to worry about carbs/calorie counting etc. Now that I am looking at calories in certain foods/drinks I am shocked. I am 37 years old and a bit ashamed I am just now learning all this. I still have a lot of questions so I made an appointment with a nutritionist at our YMCA. I am glad you explained the above because whereas before, even though we ate healthy, we all enjoy our desserts. Ever since last weeks scare I panic (quietly and to myself) when my daughter eats anything. It's the unknown and newness stage. The more educated I get, the more calm and helpful I will be for her. I am dreading the day (hopefully far off future) when she has to do insulin injections. I will have to get over my fear of needles to help her. I know I will amaze myself in what I will have to do in terms of helping her. I'd do anything for her, so that will just be another adjustment and badge of honor as a mom.

Karen
Mom to a brave 10 yr old daughter who was diagonosed as honeymooning with T1 (new terminology I have learned) March 21, 2012. Currently monitoring blood levels before every meal and at night before bed and trying to learn as much as I can so that I am prepared to take on this new chapter in our lives.
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Karenmartin25
Total Posts: 15
Registered on: ‎04-02-2012

Re: Gad65 Antibody - explanation needed

And I think I finally understand the difference bt T1 and T2. T2 is where you need to be more cautious of what you eat, whereas T1 is just making sure you take enough insulin to process what you eat, correct?

 

Not that everyone, with or without any diabetes shouldn't already eat healthy.

Karen
Mom to a brave 10 yr old daughter who was diagonosed as honeymooning with T1 (new terminology I have learned) March 21, 2012. Currently monitoring blood levels before every meal and at night before bed and trying to learn as much as I can so that I am prepared to take on this new chapter in our lives.
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katies_dad
Total Posts: 412
Registered on: ‎11-08-2009

Re: Gad65 Antibody - explanation needed

[ Edited ]

Spot on!

 

In the simplest version - and there are many nuances - T2's either do not make enough insulin for their body weight, OR their insulin is somehow defective (T2's, pardon the simple terms) and doesn't work correctly (my aunt is one of these).  Because T2's do produce insulin, diet control is a large part of the BG control.  T1's on the otherhand don't make (hardly) any insulin and  no matter how few carbs they eat they cannot control their BG's.

 

When you get to your education classes you will learn of two functions for insulin:  Basal and Bolus. 

 

Basal or background insulin is produced all the time in people without T1.  This keeps their BG's stable and steady whether they are eating or fasting.  The "rule of thumb" for insulin dependent T1's is that about 1/2 of the daily insulin will come from "basals".  Like all rules of thumb this is only a rough estimate.  Katie, by example, only gets about 1/3 of her total daily dose as background insulin.  It seems I read that a lot of children are needing less than 1/2 from basals.  I suspect it is because their relatively small bodies don't take much to stay steady, but as growing kids they eat much more than they would if they were full grown (and that size).

 

Bolus insulin is the insulin that is given with food.  It is a simple as adding up the grams of carbs to be fed and giving the insulin for it.  It can also be a bit complex as you have to plan and measure and give the insulin before the meal AND you have to get the meal sizes right.  You don't want to leave a kid hungry, but you don't want to give them more food (and insulin) than they will eat.  It's not hard, it just takes time, practice and patience.

 

I see that you visited the sticky about carb factors.  That is great!  You can start practicing now on actually measuring and weighing food and doing the carb counting, estimating portion sizes etc.  You really are blessed to get some pre-notice.  You have an opportunity to "ease into it" that most of the other parents didn't get.  When you get to your classes, make sure they talk to you in "grams" of carbs, not "carb count".  They old school way was to assume every serving was 15 grams of carbs, like it was the minimum dose.  It was easy, a glass of milk or a slice of bread = 1 "carb count".  The big steps like that work for adults of ~ 170 lbs or so, but kids at 50 lbs are 3 times more sensative to both carbs and insulin.  The old school carb count is a lot like having one hammer, a nice big one for driving framing nails.  Problem is, our children are like finishing nails.  You need small hammers for small things and big hammers for big things - You need the right tool for the job.  In this case, that tool is how you count.  I encourage you to count in grams of carbs.

Katies Dad

Katie diagnosed T1 July 2008, pumping with Animas Ping since June 2009.
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zfamily5
Total Posts: 1
Registered on: ‎11-09-2012

Re: Gad65 Antibody - explanation needed

Two years ago, I was diagnosed with type 1 at age 51.  A few months after my diagnosis, I started have symptoms of weakness, loss of balance, and coordination, all on my right side.  After going through substantial tests (MRI, CT, Spinal tap, Ultrasound, Brain Scan, and lots of bloodwork), my neurologist ordered a paraneoplastic panel (blood test) and it came back with a positive GAD65 at a level of 4800.  Needless to say, there is more unknown about GAD65 than the association with onset of diabetes, be it T1 or T2.  My neurologist referred me to Cleveland Clinic where they diagnosed me with a rare autoimmune disorder called Cerebellar Degeneration (6 known cases to date). There is very little information available within the medical community.  I am currently on a treatment of IVIG Gamunex every four weeks to stop the progression of this disorder.   I had about 4 months of physical and occupational therapy to assist in the recovery of some of the deficiencies.  It has helped substantially, but the symptoms remain.  It has been about 16 months and my levels have dropped from a high of 4800 to 1350.  I am using the One Touch Ping pump and really like the convenience in handling insulin delivery.  For anyone who is insulin dependent, I highly recommend this insulin pump.  The diabetes aside, I am wondering if anyone else out there with T1 or T2 has had a similar diagnosis or symptoms?

 

Thanks, Tina

trisha01
Total Posts: 6,394
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Registered on: ‎10-31-2009

Re: Gad65 Antibody - explanation needed

[ Edited ]

zfamily5 wrote:

Two years ago, I was diagnosed with type 1 at age 51.  A few months after my diagnosis, I started have symptoms of weakness, loss of balance, and coordination, all on my right side.  After going through substantial tests (MRI, CT, Spinal tap, Ultrasound, Brain Scan, and lots of bloodwork), my neurologist ordered a paraneoplastic panel (blood test) and it came back with a positive GAD65 at a level of 4800.  Needless to say, there is more unknown about GAD65 than the association with onset of diabetes, be it T1 or T2.  My neurologist referred me to Cleveland Clinic where they diagnosed me with a rare autoimmune disorder called Cerebellar Degeneration (6 known cases to date). There is very little information available within the medical community.  I am currently on a treatment of IVIG Gamunex every four weeks to stop the progression of this disorder.   I had about 4 months of physical and occupational therapy to assist in the recovery of some of the deficiencies.  It has helped substantially, but the symptoms remain.  It has been about 16 months and my levels have dropped from a high of 4800 to 1350.  I am using the One Touch Ping pump and really like the convenience in handling insulin delivery.  For anyone who is insulin dependent, I highly recommend this insulin pump.  The diabetes aside, I am wondering if anyone else out there with T1 or T2 has had a similar diagnosis or symptoms?

 

Thanks, Tina


 

 

Tina,

 

Come join us, please, on the Type 1 forum for adults. This forum is the Parents forum for their children. You still may end up with some answers here, so be sure to check this one as well. The Type 1 forum is here . You can repost your post there. You have information that may help others, and maybe others will be able to answer your specific question on the rare issue that you have.

 

If it is the GAD65 that is dropping, that is because more of your beta cells in the pancreas are dying off, from the autoimmune attack on the pancreas. p.s. Eventually, the GAD65 may show no antibodies, once all the beta cells have been destroyed.

 

Trisha - Type 1

 




Trisha

IDDM (Type 1 Autoimmune) 30+ years ~ Currently using MDI & Minimed CGM ~
Check out my diabetes blog!

  All brittle means, is that one has great fluctuations, which is pretty much hallmark for Type 1's. Some more so than others. - me
  First light brings a new day, new hope, new wisdom, and a chance to start fresh again. - me

If everyone were dealt the same amount of cards, there would be no challenges in life. Challenges are part of life's lessons, to teach us to grow in all aspects, and to learn what we need to learn, to make it in this world. Life was not meant to be fair. -me



~ New Type 1 Info ~ Insulin, Test Strips, Lancets, and other meds ~ Kidney Damage Info ~


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Dtlotrl
Total Posts: 12
Registered on: ‎08-26-2012

Re: Gad65 Antibody - explanation needed

Hi. I lost 135 lbs and was diagnosed with type 2 DM over a year ago. But I wasnt responding to meds that well.  My endo suspected I had Latent Autoimmune Diabetes or type 1.5.  Did a c-peptide test which if that is low means you dont make enough insulin but my numbers were not conclusive.  So he then did the Gad-65 ab test. Considered low insulin over 1.0.  I had a 22.0 on this test which is very conclusive but same lab test did the c peptide test again and that was normal.  So for now my endo has diagnosed me with the hybrid form of diabetes. Basically my clinical presentation is like type 2 but my labs and numbers incidcate I don't have enough insuli but have some insuling.  Stopped the metformin and victoza and started levomir today.  Good luck to us all.