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GAD antibody negative

A

Amy2993

Active Member
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31
Diagnosed with type 1 after DKA and weight loss. Have always felt I wasn’t diabetic. Went low carb initially and went into a great honeymoon period been off insulin for 4 weeks now. Levels are normal, never gone higher than 8. Pretty much gone back to my normal diet now with no noticeable spikes.

Doctors have now done GAD antibody test which has come back negative. Waiting for a consultants appointment to discuss but realise this could be a while. Does anyone know what the next steps will be?

Are there any other tests that can confirm either way? I would happily go private if needed just want answers.

Thank you in advance.
 
Apparently not every Type 1 has a positive GAD test. It is possible you are going through the honeymoon period and won't need insulin for some time. Of course your original diagnosis could have been wrong but only further tests will confirm either way.
 
Yeh I have heard not all type 1s have a positive GAD. I have no idea how it works haha, but I would have assumed if you were in your honeymoon period it would be higher cause there would be more antibodies attacking it than later on when all the cells are gone? I may look very stupid cause that’s not how it works at all I have no idea. Do you know what other tests can confirm? Feel I’m just stuck in limbo checking my BG all the time when I may not even be diabetic.
 
Yep me! My consultant said "so what? " If you need insulin, you need insulin. Don't sweat over it. Just my 2¢ worth.
 

The next steps? I’m disappointed to say but they’re just going to keep a close eye on you until your pancreas cannot cope and you will restart insulin. Nobody knows how long it will take.

Anti-GAD antibody positivity is only present in 70-80% of Type 1 Diabetics. There are other antibodies you may test positive for including IA-2, zinc transporter, islet cell and insulin antibodies.

Antibody tests are also not very reliable. When first diagnosed I was positive for GAD at 713 units/ml and positive for islet cell antibodies but the lab didn’t enter a value in, 3-4 months later I went to a private hospital abroad GAD at 349 units/ml and came back negative for islet cell antibodies
 
I'm sorry you were ill enough to end up in the hospital. I managed 2 years on extremely low carb and manic exercise after a type 1 diagnosis. I hoped they were wrong too, but in the end, I deteriorated onto insulin. Sometimes antibodies, disappear within months if you're not having reoccurring immune responses, so they can miss them. There is often a honeymoon period. It's important that you check your blood ketones if your blood sugars go above 13 mmol/l. I still feel like I'm not a diabetic.
 
Amy2993 said:
... Are there any other tests that can confirm either way? ...
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They usually do a panel of antibody tests, not just GAD. Together these tests, including cover 97% of cases. If you are negative for all of them, there is not much need for confirmation. Did they do antibody tests with the initial diagnosis? If not perhaps it never was diabetes.
 

I’m not really sure the DN said she would do antibody test GAD she didn’t mention any others. The nurse emailed saying the test was negative and the consultant will be in contact soon to let me know what it may mean.

No initial antibodies done and no initial HBA1C was done. Diagnosed on being in DKA and weight loss. My recent HBA1C was 33. I always felt the had the diagnoses wrong.
 
I tested negative for antibodies at the time of diagnosis 5 years ago however i am now insulin dependent
 
I don’t know how long you have been diagnosed, but the advice given to the medical profession is not to do the tests in the first six months as they are notoriously unreliable.
 
I tested negative for all the antibody tests but the consultant has ordered a c-peptide, renal panel & a pancreas scan.

But I’m in a different position since I still require insulin, it’s been reduced since diagnosis but at a certain point levels rise if I reduce it further.

Perhaps a cautionary approach would a hba1c test every 3 months & BG spot checks, especially if you start to feel unwell again.
 
becca59 said:
I don’t know how long you have been diagnosed, but the advice given to the medical profession is not to do the tests in the first six months as they are notoriously unreliable.
Click to expand...

I was diagnosed in June. Why are there not any clear, reliable tests haha. There were just a lot of factors in the days and weeks leading up to my diagnosis which make me think it’s not diabetes.
 
If you were in dka then there is a very high probability that your type 1 diabetic.
 
jamesfitz said:
If you were in dka then there is a very high probability that your type 1 diabetic.
Click to expand...

And that’s what the doctors keep telling me, but if everything else points to me not have type 1. People can go into DKA without diabetes surely?

I know everyone wants to be the odd case, and I’m sure everyone believes they are the exception. I just feel without antibody or an initial HBA1C they can’t be sure that is what caused DKA.

In the week leading up to my diagnoses I had a car crash on the motorway, I was taking a lot prescriptions drugs up until 3 days before I went into DKA, where I stopped taking them completely. I fee this may be the reason I was in DKA.
 
I am type 1

Never had gad antibodies

But a c-peptide test has show me producing as good as no insuljn
 
jamesfitz said:
If you were in dka then there is a very high probability that your type 1 diabetic.
Click to expand...

Could also be T2 with stratospheric insulin resistance.
DKA is a sign that there is not enough insulin to clear the glucose from the blood.
As I understand it this is either due to very low insulin or very high IR.
In either case the body takes emergency measures and switches over to running on ketones.
I think T2s are also diagnosed via DKA at times - however I think this is most often linked to obesity and very high insulin levels.

[Note to self: DKA must also mean that the body is unable to use the ketones for energy and absorb them into the cells. Must check further.]
 
LittleGreyCat said:
Could also be T2 with stratospheric insulin resistance.
Click to expand...

I have wondered if it could be type 2, I was overweight until a year or two ago were I lost considerable weight, I’m 26.

Would be levels be normal without any medication or eating healthy if I was type 2? Do they have some sort of honeymoon phase?
 
Yes, it could be T2. And could what was thought to be DKA have been HHS (Hyperosmolar Hyperglycemic State)? Lasting remission after weight loss and improving diet is also possible. That blood glucose is still somewhat raised also supports this. But what caused the weight loss, if it wasn't lack of insulin, is still a mystery.
 

I mean I ate well the initial month or two after diagnosis but then have gone back to my normal diet and there’s no change in my BG levels. They are normal at between 4/5 before meals, 6-7 in half hour after eating before going back down within an hour or less. Sometimes spikes to 8 but very rarely. I haven’t lost weight since diagnosis put on about 5 pounds.
 
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