Anyone having GAD antibodies disappear completely?

[TypeZero.]

Hi all,

I was wondering if anyone has ever had their antibodies disappear and did it help them?

So the background to my story is I was diagnosed 6 months ago with GAD antibodies level of 713 U/ml

Then about 3 months after I went abroad and went to a private hospital for diabetic checkups and they just randomly did the test and my antibodies were down to 359 U/ml

I recently moved out of London and because the NHS is so disconnected they redid antibody tests again and my GAD antibody tests were down to 164 U/ml.

Now I know a lot of you are going to say that my cells were killed so my immune system doesn’t need to produce as much antibodies BUT my basal insulin has consistently been 14 units throughout the whole 6 months and I used the same amount ever since leaving the hospital so never really had a wonderful honeymoon like some people do.

Is my immune system establishing tolerance or am I going crazy?

In terms of other antibodies:
For ICA I am negative
For IA2 the results haven’t come yet
For insulin abs (irrelevant as usually occurs in young kids)
For Zinc transport abs (occurs generally later on in the progression of the disease so irrelevant)

 

[ert]

The antibodies are supposed to disappear six months after an immune response. Or so my specialist says. Having them for longer could indicate (ongoing or more than one) immune attacks on your islet cells. I didn't have any GAD antibodies (for 1.5 years) between two immune responses two years apart, which in the end left me with only trace c-peptide. I tested positive again when I deteriorated onto insulin, two years after diagnosis.

Also, GAD antibodies can exist in general in people without diabetes, who never go on to develop diabetes. They are also linked to other autoimmune diseases like rheumatoid arthritis and thyroid disease.
https://www.healthline.com/health/diabetes/GAD-antibodies#cause

 

[KK123]

Hi all,

I was wondering if anyone has ever had their antibodies disappear and did it help them?

So the background to my story is I was diagnosed 6 months ago with GAD antibodies level of 713 U/ml

Then about 3 months after I went abroad and went to a private hospital for diabetic checkups and they just randomly did the test and my antibodies were down to 359 U/ml

I recently moved out of London and because the NHS is so disconnected they redid antibody tests again and my GAD antibody tests were down to 164 U/ml.

Now I know a lot of you are going to say that my cells were killed so my immune system doesn’t need to produce as much antibodies BUT my basal insulin has consistently been 14 units throughout the whole 6 months and I used the same amount ever since leaving the hospital so never really had a wonderful honeymoon like some people do.

Is my immune system establishing tolerance or am I going crazy?

In terms of other antibodies:
For ICA I am negative
For IA2 the results haven’t come yet
For insulin abs (irrelevant as usually occurs in young kids)
For Zinc transport abs (occurs generally later on in the progression of the disease so irrelevant)

I was told that you've either got antibodies or not (but this was GAD antibodies in my case) and that generally it makes no difference whether it's a higher or lower number, they also said antibodies can disappear altogether. I was told that the presence of them versus no longer having them made no difference to anything. Also, having a honeymoon does not mean you plod along with NO insulin necessarily, it could be that you simply need lower amounts because you may still be producing some of your own. Your 14 units of basal sounds like you still could be in a 'honeymoon' period to me. Also, I'm not sure many of us would ever find out whether we still had antibodies after the first test, it was hard enough getting the test in the first place! x

 

[TypeZero.]

I was told that you've either got antibodies or not (but this was GAD antibodies in my case) and that generally it makes no difference whether it's a higher or lower number, they also said antibodies can disappear altogether. I was told that the presence of them versus no longer having them made no difference to anything. Also, having a honeymoon does not mean you plod along with NO insulin necessarily, it could be that you simply need lower amounts because you may still be producing some of your own. Your 14 units of basal sounds like you still could be in a 'honeymoon' period to me. Also, I'm not sure many of us would ever find out whether we still had antibodies after the first test, it was hard enough getting the test in the first place! x

Well the number of GAD antibodies kind of does matter. The more antibodies you have the quicker your cells will be destroyed - that’s why people with diabetes type 1.5 have low number of GAD antibodies thus it takes years for them to require insulin.

If these antibodies disappeared sooner then you would retain more of your insulin production but I’ve read somewhere that people with autoimmune conditions have flare-ups so potentially when I was first diagnosed I was having a flare up and there is a potential of having another flare up which may make my antibodies go sky high and destroy any little cells I have

 

[Seacrow]

I wasn't tested for antibodies at diagnosis because I presented with ketones off the scale, which automatically got me written up as type one. Three years later I transferred to a good diabetic clinic, they ran tests and I got GAD positive, c-peptide zero. Another seven years and my doctor wanted to double-check, GAD negative, c-peptide in non-diabetic range.

So, in theory, if I had no insulin resistance I might be non-diabetic. Right up to the point where my immune system had another attack. (I actually have severe insulin resistance, so I'm never going to be non-diabetic).

 

[KK123]

Well the number of GAD antibodies kind of does matter. The more antibodies you have the quicker your cells will be destroyed - that’s why people with diabetes type 1.5 have low number of GAD antibodies thus it takes years for them to require insulin.

If these antibodies disappeared sooner then you would retain more of your insulin production but I’ve read somewhere that people with autoimmune conditions have flare-ups so potentially when I was first diagnosed I was having a flare up and there is a potential of having another flare up which may make my antibodies go sky high and destroy any little cells I have

Do you have any evidence of this?, it sounds interesting. x

 

[TypeZero.]

Do you have any evidence of this?, it sounds interesting. x

I can’t find any evidence on it because it’s a well established scientific fact so nobody really shares anything about it. Antibodies are Y-shaped proteins produced by B lymphocytes, the antibodies bind to antigens which is GAD65 in our case, this triggers inflammation and alerts other immune cells such as cytotoxic T lymphocytes to release molecules such as perforin and granzyme which destroy your pancreatic B-cells, this causes more antigens to be released and sooner or later you might have other antibodies popping up.

So the idea is, if you have fewer antibodies your immune system is not as stimulated so it kills your pancreatic B-cells more slowly. I’ve found this little info graphic to support my claim

https://www.researchgate.net/profil...DA-patients-at-the-time-of-GADA-screening.png

The people who require insulin have a much higher antibody count than those who do not.

 

[MarkMunday]

I found the results of this study interesting:

Within the first 5 years from diagnosis, 19.4% of individuals (median age 13 years) had neither GADA nor IA-2A, and by 6 to 13 years after diagnosis (median age 18 years), 31.7% were antibody-negative. There was no significant interaction between onset of disease and duration of diabetes for IA-2A (P = 0.30). The interaction was significant for GADA (P = 0.0002), resulting from differences in subjects diagnosed at or older than age 14. For these individuals, there was no apparent effect of duration of disease on the percentage of GADA-positive subjects within the first 5 years of diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/ar...he first 5 years,31.7% were antibody-negative.

 

[ashish1]

Hi all,

I was wondering if anyone has ever had their antibodies disappear and did it help them?

So the background to my story is I was diagnosed 6 months ago with GAD antibodies level of 713 U/ml

Then about 3 months after I went abroad and went to a private hospital for diabetic checkups and they just randomly did the test and my antibodies were down to 359 U/ml

I recently moved out of London and because the NHS is so disconnected they redid antibody tests again and my GAD antibody tests were down to 164 U/ml.

Now I know a lot of you are going to say that my cells were killed so my immune system doesn’t need to produce as much antibodies BUT my basal insulin has consistently been 14 units throughout the whole 6 months and I used the same amount ever since leaving the hospital so never really had a wonderful honeymoon like some people do.

Is my immune system establishing tolerance or am I going crazy?

In terms of other antibodies:
For ICA I am negative
For IA2 the results haven’t come yet
For insulin abs (irrelevant as usually occurs in young kids)
For Zinc transport abs (occurs generally later on in the progression of the disease so irrelevant)

Hey, did you find an answer to your question? Did your immune system actually develop resistance?

 

[Fenn]

I wasn't tested for antibodies at diagnosis because I presented with ketones off the scale, which automatically got me written up as type one. Three years later I transferred to a good diabetic clinic, they ran tests and I got GAD positive, c-peptide zero. Another seven years and my doctor wanted to double-check, GAD negative, c-peptide in non-diabetic range.

So, in theory, if I had no insulin resistance I might be non-diabetic. Right up to the point where my immune system had another attack. (I actually have severe insulin resistance, so I'm never going to be non-diabetic).

I’m sorry to jump in but are you saying you had cpep result zero then had a later test that showed normal? My result was 0.05, does your comment mean my cpep could be better if I tested again? Sorry if a dumb question.

 

[Bubbleblower]

My antibodies have disappeared almost and in September I will know if they have disappeared completely. I assume if they couldn't disappear they wouldn't even test it.

my cpep could be better if I tested again?

You bet it could and it seems vitamin D helps with that.

 

[EllieM]

You bet it could and it seems vitamin D helps with that.

That's interesting. I didn't know that. Have you got a link?

And of course, a better cpeptide result depends on what type of diabetes you have.... T1s are too low, T2s are usually too high (at l;east at the beginning)...

 

[Fenn]

My antibodies have disappeared almost and in September I will know if they have disappeared completely. I assume if they couldn't disappear they wouldn't even test it.


You bet it could and it seems vitamin D helps with that.

That’s amazing, as cpep was the only reason I was rediagnosed, I could presumably be rerediagnosed? Consultant has applied for me to get funded libre, I better hope they don’t find out I’m a potential fake before I get it lol

I have been taking VitD since the start of the pandemic and pre cpep test

 

[Seacrow]

I’m sorry to jump in but are you saying you had cpep result zero then had a later test that showed normal? My result was 0.05, does your comment mean my cpep could be better if I tested again? Sorry if a dumb question.

Yes, my c-pep went from zero to normal. My diabetes consultant says he's not seen another case like it, and while you can imagine a set of circumstances which permit it, in reality, this shouldn't happen. Once the insulin producing cells are dead, they should not be able to regenerate. C-pep should not be able to increase from zero.

If your c-pep isn't all the way down to zero, then it can increase. I don't know if more insulin producing cells can be formed, but the remaining ones can go into overdrive and produce more insulin and c-pep.

 

[Bubbleblower]

Once the insulin producing cells are dead, they should not be able to regenerate.

Dead cells don’t regenerate, but new cells are born all the time. When it comes to antibodies this is an interesting view:

Bart Roept

 

[Seacrow]

Dead cells don’t regenerate, but new cells are born all the time. When it comes to antibodies this is an interesting view:

Bart Roept

Large number of points I don't agree with here. Once insulin producing beta cells are destroyed by the the auto immune reaction they do not regenerate, they do not regrow and you do not get 'new cells' born. There are large amounts of evidence for this, the most convincing being that type ones with no on going immune reaction do not regenerate an insulin producing ability. Think of them like a female's egg cells, you are born with a finite number, when they're gone, they're gone.

Antibodies as a side effect of the reaction that kills the betas. Well, yes, that's what antibodies are. They are the bodies way of identifying and neutralizing the 'foreign ' body that is killing cells. Either this guy doesn't have basic biology, or his systematic knowledge base differs considerably from most doctors.