Hi, all! I was diagnosed as prediabetic (A1C 5.7) almost 1.5 years ago, along with a hashimotos diagnosis at the same time. This was 5 months after having a healthy baby boy. I am naturally thin, so my endo tested my c-peptide and insulin levels (both low) and my GAD65 antibodies (elevated). At that point, she suggested going gluten free and basically waiting for diabetes to fully develop. I went gluten free, as she suggested, and started eating low carb about 6 months ago. My current A1C is 4.9. Only diet. And my GAD65 antibodies tested in the normal range (not elevated). I have to eat low carb (to my meter) or my blood sugar will spike (the highest spike I’ve recorded is 164), so clearly I’m diabetic.
So what’s going on with me? I’ve been diagnosed so early, and it’s obviously very slow onset, so is there anything I can do at this point to help lower inflammation and possibly slow the onset of this?
Also, I’m very early pregnant after two miscarriages, and I’m obviously concerned about the progression of this during pregnancy. Thank you for your suggestions!
Not an expert, here, but it would seem to me that what you’ve been doing is working to slow that progression down to a near standstill – perhaps even having it backtrack a bit, if the normal GAD65 is any indication (which I am unsure about).
I’d keep doing what you’re doing, and testing a lot to keep an eye on things. Make sure your OB/Gym is aware of the situation, as well, so you’ll be prepared to make changes if needed through the pregnancy.
It’s amazing that you have been able to stave off Type 1 for so long, but I would be remiss if I didn’t say it still could happen…but it won’t be because of anything you did wrong.
When I was first diagnosed, I met my team (PCP, diabetes nurse, etc…). The diabetes nurse said, “oh, I remember you.” I was puzzled by what she said but was overwhelmed at the time.
I went through my medical history later and found that a year earlier, I had a 6.8% A1C that did not repeat three months later. I have no recollection of them saying anything to me at the time, which seems really strange.
You are doing exactly what you should, dealing with what is and keeping an eye out for changes. Continue what is working for you, but don’t feel bad if it’s not enough.
Thank you! I am very confused by the onset of this, as well. I’m thankful that it’s been slow, but I also have the feeling that I’m missing a golden opportunity most people do not have to do something. But it will probably just happen when it happens.
How long have you been gluten free? I think your endo did you a disservice by recommending that you go gluten free without getting tested for celiac disease. TD1, celiac disease and Hashimoto’s are strongly linked. Your GAD antibodies many have decreased because you might have celiac disease and a GF diet reduces not only celiac antibodies, but often other antibodies. It is all about inflammation and your body attacking you! My Hashi antibodies increase if my celiac antibodies increase (due to gluten exposure) and vice versa. In fact my thyroid nodules and enlargement are gone! I have insulin resistance. I have not had my GAD antibodies tested for a variety of reasons. I monitor with my meter and control with diet alone for now.
Testing for celiac disease does require you to be on a gluten diet. So, it might be too late, at least while you are pregnant. I can tell you that celiac disease is also linked to miscarriages, but that can be managed on a GF diet! So do not panic. You might have to take the GF diet very seriously and act as a celiac until your baby arrives. Discuss this with your OBGYN. Your thyroid should be carefully monitored as well.
Hey! Thank you for your response! She did test me for celiac disease before I was put on the diet, but it was negative. She said some people still had positive results from avoiding gluten, so I could try it.
There certainly have been studies identifying the possibility of “non-celiac gluten sensitivity” – which can result in an autoimmune attack, and yes, be responsible for some of those GAD65 antibodies. Here’s one: http://gut.bmj.com/content/early/2016/07/21/gutjnl-2016-311964.full - but just search “non-celiac gluten sensitivity”’ and you’ll find more.
As to LADA being slow? It definitely can be – in fact, it’s usually a low slower than “typical” Type 1. How slow? and how it will manifest? I think that’s definitely a time to say ‘YDMV’ – your diabetes may vary – I think there is a LOT of variation on presentation and timing. I may be in that position, myself – jury’s still out on that one!
Honestly, other than the pregnancy, you sound like you’ve got something very similar to whatever I have. I was diagnosed Type 2, initially, but had very low fasting insulin and elevated antibodies. After adopting low-carb eating and taking Metformin, my BG and A1c are firmly back in the “normal” range (last A1c is 4.6%, my fasting BG ranges from 85-95 depending on how many carbs I’m eating). The last endo I went to even questioned whether I was “actually” diabetic. I’m also thin (although as a weightlifter I’ve had times where I was pretty stout) and athletic at 42.
Point being, I’m now in a “holding pattern” where my doctors are telling me to just keep doing what I’m doing and see what happens. I’m likely not Type 2, or some very “weird” type of Type 2 (I am insulin sensitive). I’m likely LADA (positive for antibodies) but, at this point, pretty much presymptomatic. I can definitely have bad BG numbers if I don’t watch my carb consumption, but all I take is a half dose of Metformin, low-carb (about 50g per day right now), and plenty of exercise.
It works, for now, and we’ll see how it develops over time.
If you go back to the 80s and 90s original research on slow-onset adult Type 1, in which the term LADA was suggested, they indicate that “progression” to insulin dependence can take anywhere from 6 months to fifteen or more years after detection of antibodies associated with Type 1. I’m sure that, with increased testing and knowledge, that window might even be considered a bit larger now. Then again, it seems few doctors (and even endos) are familiar with that kind of research, so it can be hard to get that kind of info without access to scientific literature. I’ve been told by two different doctors now that they don’t “believe that LADA is real.” In 2016 and 2017, I’ve been told that “Type 1 is for kids and Type 2 is for adults.”
I’m curious what these two doctors objected to about LADA. Did they believe it’s simply type 1 diabetes and any further adjectives are superfluous? Do they think that LADA is really type 2 diabetes? Do they understand that classic T1D occurs with blood antibody markers whereas T2D does not?
This reality screams willful ignorance to me. That and a basic lack of intellectual curiosity. I know that doctors are just people but their advanced level of education and medical degree confers on them a natural propensity for their patients to accept their doctors’ position on things medical as credible.
I suspect your level of knowledge about the medical literature likely makes some of these doctors feel insecure. Your experience of these kind of statements from doctors is unsettling to patients. We want to believe what doctors tell us at face value. Unfortunately, it’s more complicated.
Can’t agree more. I honestly think that, in my case, the “not believing in LADA” is just based in shallow experience and lack of need to look deeper. I live in the interior PNW, which is incredibly sparsely populated. My PCP who originally diagnosed me flat out didn’t believe that adults could develop Type 1. The endocrinologist I saw (the only one in the northern half of the state) predominately deals with childhood Type 1 cases, and flat out told me that, despite antibodies and family history, because my A1c was good without insulin that I must, necessarily, be Type 2.
She also, amusingly, was the doctor recently that insisted I raise my A1c to 6.0 or higher, since it was unsafe for a diabetic to be below that (regardless of the fact that this is the same doctor who just told me I couldn’t be Type 1 because I wasn’t on insulin). After consulting again with my Primary Care Physician (the new one, after I fired the “only children get Type 1” guy), we agreed that I’d just more or less manage my own case, with her help on prescriptions, until something happens to change that. She also apologized for referring me to the endocrinologist in the first place.
My PCP, who, at least is willing to learn new things, has told me a version of this – which is also wrong. When I told him my endo had re-categorized me as Type 1, he shook his head, “No, can’t be Type 1 - he must mean Type 1.5.” – with the implication that “Type 1” is only for children… Whether LADA (which is what he meant by T1.5) is just Type 1 that happens to come on more slowly than T1 does in younger folks or whether it is a somewhat different route to a condition that is, essentially Type 1 notwithstanding, there clear are folks that present as “classic Type 1” who are my age and older.