GAD levels, confusion

thanks, i think i'll ask my endo that as well, what the statistics or percentage is that type 1's will develop other autoimmune related diseases. my aunt had rhumatoid arthiritis Dx, at age 12, which she eventually died from..maybe that was the autoimmune 'link' for me...who knows.

In my research I have found the following and more:

"Individuals with an autoimmune disorder are at increased risk of developing a second autoimmune disorder." -http://www.sclerodermatt.org/articles/news/393

"Type 1 diabetes (T1D) and autoimmune thyroid diseases (AITD) frequently occur together within families and in the same individual."- http://edrv.endojournals.org/content/29/6/697.short

"Insulin-dependent diabetes mellitus patients with hypothyroid Hashimoto’s thyroiditis were more likely to report another autoimmune disease compared to euthyroid Hashimoto’s patients or individuals with no thyroid disease (30.8% vs. 17.2% vs. 13.9%; P < 0.01)." - http://jcem.endojournals.org/content/83/5/1548

"Some researchers recommend that Type 1 diabetics and their families be screened yearly for thyroid function. This is particularly true for family members if the Type 1 diabetic has developed thyroid disease, which puts the family members at increased risk."- http://www.genetichealth.com/DBTS_Other_Diseases_in_Type_1_Diabetes.shtml

"Autoimmune thyroid diseases are frequent in patients with type-1 diabetes mellitus.""These findings suggest that there is a strong association between type 1 DM and autoimmune thyroid
disorders. The detection of these abnormalities in early stage will help the patients to improve quality of life
and reduce the morbidity rate."- http://indjst.org/archive/vol.3.issue.9-10/sep10kedari-8.pdf

However, the "Type 2s" who are found to be GAD positive are misdiagnosed Type 1s/LADAs--they have autoimmune diabetes. There is a small percentage of people who are GAD positive who don't have Type 1 diabetes, but I don't know of any study that is following that group of people to find out if they develop Type 1 diabetes at some point in their lives. Finally, some of the studies (TrialNet, for example) that have looked at the antibodies associated with the autoimmune attack in Type 1 diabetes (GAD, ICA, IA-2) have come up with predictive tools of who will develop Type 1 diabetes and how soon, based on levels of antibodies and positivity for one or more.

yeah, i don't know any type 2's who are antibody positive? that's why these two diseases are so entirely different!

Holger -

I'm pretty new to this GAD test thing. Keep in mind that I was diagnosed without even a blood test 30 years ago and sometimes I think of bg testing as newfangled :-).

I googled around a bit for "GAD antibodies" but I'm not sure I even figured out what GAD stands for much less what the test actually looks for.

Have you read anything that suggests, that GAD tests be run on the general population as a "pre-screening" for T1?

Have you read anything that suggests, that GAD tests be done on blood relatives of T1's that are not yet diagnosed with diabetes, or on those with hypothyroidism but not diagnosed with diabetes?

Does the GAD test have a large "false positive" rate? i.e. if only 0.1% of the general population is T1 diabetic, what percentage of the general population tests positive for GAD antibodies?

Mostly I'm trying to figure out what the medical standards for such tests are today. While I showed up in the ER in DKA coma as a kid, obviously it would be nice if not everyone had to be diagnosed in that way.

Tim.

Hi Charity: Welcome! I have both Type 1 diabetes and Hashimoto's Disease, and I was diagnosed with Hashimoto's very soon after my Type 1 diabetes diagnosis. In people with autoimmune diabetes, autoimmune hypothyroidism (Hashimoto's) is the most common associated autoimmune disease, followed by celiac. One stat I have seen says that by age 40, 80% of women with Type 1 diabetes will also have Hashimoto's Disease. I take Levothroid, and I feel great at the levels I am at (symptom free).

I have thought about what I would do if I were in your situation. First, I would work to get better information for myself regarding the treatment of Hashimoto's. Gerri, one of the TuDiabetes admins, is a good source of information on Hashimoto's. Then, I would get the full suite of antibody tests, not just GAD (so I would get GAD, ICA, IA-2). I would do this because the more antibodies a person has, and the higher the levels, equates to a much greater risk of developing Type 1 diabetes. Getting into the weeds, I would exercise regularly and eat a lower carb diet, and I would test my blood sugar occasionally before meals and 1-2 hours after a meal. Being a person who wants to know where I stand, that's what I would do. Finally, if I felt the endo was not being the kind of advocate for my health that I want, I would go to a different endo (maybe seek some recommendations prior). Just my two cents!

there is tons of info out there, http://diabetes.diabetesjournals.org/content/50/8/1735.long

Thank you very much Melitta, you sound like you have done your research. I have an appointment with a new Endo on the 13th of January, its a friday.....scary. I was doing great on my medication until it got cold, thats when I always seem to get all messed up. I am doing ok on my meds now, I am just kinda tired and joint pain. I will talk to my new Endo in lengths about this.

I am looking into the TriaNet, I don't know if I qualify to be studied, but I will sure look and see.

You and others have been so helpful. Thank you you all are truly making a difference.

i'll just throw this out there, what Charity listed as her results for her GAD 65 are sky HIGH, incredibly high, if those are indeed the results, at those HIGH positive antibody numbers, i would think (assume) that something would have already been effected in terms of blood sugars...again off the chart results. something seems odd.

Charity, don't get scared or concerned. If you're unsure of your results, please discuss with your Endo - a medical licensed Endocrinologist, who I believe you mentioned didn't want to do anything in terms of 'thyroid' for you either. none of us are doctors and can't possibly know your whole medical history...plus, there's your interaction and treatment and Dx, as you stated, with a naturopathic doctor. So, i'm not really sure with all this.

Hi Tim: The antibody tests are glutamic acid decarboxylase antibodies (GAD), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies, and the presence of one or more of the antibodies in someone with a fasting BG of 125 mg/dl or greater means the person has Type 1 autoimmune diabetes. Zinc transporter (ZnT8) is "the new kid on the block" in antibody testing. One or more of the antibodies is present in the vast majority of people with Type 1 diabetes. The TrialNet study is looking at relatives of people with Type 1 diabetes, performing antibody tests on those people as a "pre-screen" for Type 1. Antibody testing for someone in a situation such as yours at diagnosis isn't really necessary, but antibody testing can be extremely useful for people with adult-onset autoimmune diabetes (so they get appropriate treatment (exogenous insulin) and are not misdiagnosed as having Type 2 diabetes) and also for women with gestational diabetes (about 10% of Caucasian women with GDM have autoimmune gestational diabetes, and if it is not caught very quickly, the results are tragic).

My reading of that article, is that of the non-diabetic population they tested, 3% tested positive for GAD antibodies.

I know that they weren't testing the general non-diabetic population but were focusing on relatives of T1's and I'm sure that skews the statistics... but off the top of my head, I'm not sure which way it'd skew things!

If only 0.1% of the population has T1 diabetes... that's interesting. I'm not sure it makes GAD useful as a "pre-diabetes" screening tool if false positives outnumber the actual disease rate by a factor of 30. You can tell me I'm reading the statistics wrong.

well, typically a cpeptide is done along with the antibodies too when diabetes is present. i told my brothers to take the test, see if they tested positive for any of the antibodies...they refused (I wouldn't do it either if I were them)...so, you screen positive for the test..what does that mean then...maybe nothing.

Like you my type has never been determined with blood tests. I am not sure if the pre-screening would be helpful. It is not possible to stop the autoimmune attack after it has started. If the general population would be pre-screened then it would reveal high GAD results for some individuals like Charity. Of course as I have pointed out it is good to be prepared. Your point about the coma is the perfect example. It is life threatening to let it progress that far. The individuals with positive results could be educated to know the signs to look for and so forth. At the same time these individuals would worry for a long time until the autoimmune attack will lead to the first stages of type 1 diabetes. Worries are really impacting the quality of life. Here the relation between precaution and being overly alert can easily get out of balance. In general the signs of type 1 diabetes can not be overlooked if the people knew what to look for: peeing, weight loss, breath smelling like acetone. I think a campain that is pointing at these symptoms would have a higher impact than a costly GAD screening. I am sorry but I have no data at hand about the likelyhood of false positives. I think it must be low to make the test useful but surely it is possible.

Well, they are different but the newest studies even link T2 to an autoimmune reaction.

It is my understanding that only 85-90% of T1s test positive for any antibody, but that doesn't make then not T1. Most T2s are not tested, so it is not surprising that you don't know any. You might find this surprising, but having been diagnosed T2, I actually find I need to treat myself more like a T1. Medications never helped so today I use insulin. Diabetes is a spectrum disorder. T1, T2 these are just labels. Everybody has their own personal diabetes.

they're not just labels...they're two distinct diseases, in most cases...90% of type 2's have additional metabolic syndromes - symptoms; excessive weight, high blood pressure, cholesterol, family history, etc...these are just facts. i'm not being condescending or mean, but go sit in a crowded Endo's office and compare most the type 2's with the type 1's sitting there, you can often see the difference. it's just true. there are exceptions, there are exceptions to everything, especially this disease..the type 2's who are tested, typically because there isn't clarity on the disease 'type'...usually do test positive for the antibodies and have been misdiagnosed.

I think it is a misrepresentation to say that "the newest studies even link T2 to an autoimmune reaction." Only a very small percentage of people diagnosed with Type 2 diabetes test positive for the T cell reactive antibody. GAD, ICA, IA-2, and/or ZnT8 are the antibodies seen in Type 1a/LADA, and the OP tested positive for GAD (the only antibody she was tested for).

Hi Brian: I don't see how autoimmune diabetes (GAD, ICA, IA-2, and/or ZnT8 positive) and monogenic diabetes are spectrum disorders. And yes, you were diagnosed as having Type 2 diabetes, but that is the "garbage can diagnosis" (to quote Natalie) and you haven't done all the testing that would rule out T2. (I was also diagnosed initially as having Type 2 diabetes, but I was misdiagnosed and my diagnosis was corrected to Type 1a diabetes). I am not sure I would call Type 2 diabetes a spectrum disorder, it is certainly complex (and not well enough studied). For lack of a better term, "garbage can diagnosis" is the best descriptor I know.

i think one can often tell the difference in terms of how much insulin a type 1 takes vs. a type 2...i read on one type 2 post someone was having to take 200 units of levemir, basal. for most type 1's that would kill us. i'm happy insulin works for type 2's too and insulin should be available for ANY type who needs it to control their diabetes...but there is a difference in terms of dosage, treatments, protocol, etc...

Melitta

I thought "an autoimmune reaction" is a term general enough to extend beyond the autoimmunities involved with developing type 1. I am just refering to the type 2 studies where the scientists see clear indicators for the involvement of an autoimmune reaction against adipose tissue. It is a different reaction but nevertheless it is autoimmunity. Or as one of the scientist said: "We are in the process of redefining one of the most common diseases in America as an autoimmune disease, rather than a purely metabolic disease." Let me say it again: they are clearly different. But they might have more in common than we all think. To me there is an environmental factor involved for all the autoimmune problems we see. The current rate of new T1 and T2 cases is just too abnormal:

T1 rate in Germany:
2010: 19.4 new cases per 100.000
2026 (projection): 37.9 new cases per 100.000

Or T1 rate in Finnland:
1980: 31.4 new cases per 100.000
2005: 64.2 new cases per 100.000

The numbers for T2 are much higher. An elephant is in the room...