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Trying to find out if I'm diabetic

Discussion in 'Type 1.5/LADA Diabetes' started by erin40, Nov 25, 2020.

  1. erin40

    erin40 · Member

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    Hi everyone,

    Sorry in advance for the long post. I am trying to find out if I am diabetic or not, and am curious as to what people think who have been on this rollercoaster ride themselves. This indeterminacy has been going on for me now for a year and a half. I have three people with T1D in my family, and they were all diagnosed in their late thirties (my age now). Around last March, I suddenly had a feeling like I couldn't digest the sugar in my meal. I felt like I had eaten five chocolate bars when it was only oatmeal. It felt like I was hungry but food wasn't feeding me. I was amped up and super thirsty. This was the exact feeling my brother said he had when he became diabetic. He kept eating and wound up with a big dramatic problem; I switched my diet to low carb, and the problem retreated... At least, at first. So, I forgot about it and started eating high carb again. And, I was getting slow healing cuts and stuff. Then several months later I had another 'crash' feeling and felt like I couldn't eat anything sugary. It was like I was a prisoner in my own diet.

    I feel like this is likely diabetes but I haven't been able to get medical confirmation of it because, seeing as I switched my diet to low carb, my blood sugar is in the normal range. I ate one high carb meal in the last year, and my BS spiked to 12.7 (227) two hours after, and 11.5 (205) four hours after. But that's it. It's frustrating because, I am fairly certain I could do the OGTT and have confirmation of the problem in two hours, but I don't want to hurt my pancreas further just to get a diagnosis. 'First do no harm' is a principle that seems to be completely disregarded when it comes to the OGTT, at least for people with type 1.

    So, I have had a bunch of other tests. My GAD and islet cell auto-antibodies are both negative. Which is fantastic. But, my insulin level is borderline low and fasting C-peptide was also very low amd into the range where they recommend starting insulin. My endo insists I am not diabetic based on these results, but I am not convinced. She said to increase my carbs by eating higher carb vegetables, and I was like ok I will, how about oatmeal? 'No! Not oatmeal!' Oatmeal is too high sugar, apparently. So I am like, why are you telling me not to eat oatmeal if you don't think I'm diabetic? Should I not be able to handle oatmeal in that case?

    I feel like I am playing a game of Clue trying to figure out what my problem is. My Dr. basically admitted indirectly that, even if I had positive antibodies there isn't anything they could do to stop the progression of the disease, (if it's T1 - it's not likely to be T2), so there's no point worrying about it at this stage. In the meantime though, I am in the epistemic-diagnostic hinterlands and it's frustrating not knowing what's going on, and being told I am fine when I don't feel fine at all and I can't eat: bread, pasta, rice, quinoa, oats or potatoes, or particularly, carrots peas and corn. I think my endo intuitively suspects something may be wrong but she doesn't want to say because I might start bugging her for more tests. I don't want more tests, I just want a more straighforward sense of how likely it is that I have this problem. At this point all I have is sort of anecdotal signs, so I was wondering, I guess, if any of this experience rings a bell with anyone else as regards, what it was like for you around when you first started having problems, and if so if you have any thoughts or suggestions.

    --

    2) I am eating mostly meat and low carb vegetables, plus fats like avocado and hummus. I feel low energy and lethargic. I am wondering, is this likely to be my diet? Some people on this forum seem to suggest that once they started on insulin and went back to eating carbs, their energy improved. I am wondering if that is likely to be the case because a part of me wouldn't mind trying to get some, maybe, fast acting insulin and eat some bread, for example.

    My endo is unlikely to prescribe this though when she is saying I am not diabetic.

    --

    3) My endo said something super encouraging about T1D. She said that it's not known whether a low carb diet can prevent the development of it. It is not believed to be the case, unlike in type 2 diabetes where a LC diet is clearly shown to reverse the problem. But it might be possible and they just don't know, they just don't have evidence. So, it's possible that my low carb diet is not only 'hiding' my problem or diagnosis, but it is actually interacting with it, in the sense of preventing it.

    Also: Dr. Valter Longo has done research on how prolonged fasting can reverse T1D in mice. On one of his youtube videos, he states that prolonged fasting actually consumes autoimmune cells. It regenerates the pancreas on the one hand, through the activation of stem cells; but it also somehow affects (decreases) autoimmune cells. I find this super interesting as I have done a few prolonged fasts in the last year (actually, fasting mimicking diets using his protocol), and I found that my ability to tolerate sugar after each one improved slightly. Also, I am currently antibody-negative. A minority of people with LADA don't have the antibodies, but I am wondering if it is possible that my fasting has eliminated them. If so, that would be super amazing.

    I basically don't feel sick or healthy. I feel in-between. It feels like my pancreas - or something - is not fully functioning in the way that it used to, but the problem has not got any worse in about a year, since I changed a bunch of things in my lifestyle. It has remained the same. If so, I wonder if it could be a rare situation - perhaps not so rare, but, it seems, unknown to the doctors, from their perspective - of managing & keeping at bay an early T1D, or what would otherwise develop into it - through lifestyle changes.

    Before I changed certain things, my situation felt like it was deteriorating. Since then, I have been able to manage on my own without undue panic and discomfort. What I did, just in case anyone is interested:

    --general disclaimer: this involves fasting. I think fasting is pretty dangerous and not recommended for people on insulin, outside of a supervised setting. Ditto for other diabetes drugs. I am not recommending it. I am not on any drugs, so I have been fasting without incident.

    1) low carb diet. I eat a lot of low carb vegetables, plus meat and dairy, nuts etc
    2) time restricted eating, following Dr. Satchin Panda's general protocol / advice. I eat for ten hours in the early part of the day, and fast for 14. This is because women reach autophagy faster than men, so our time restricted feeding does not have to be as restrictive for us in order to get the benefits. (Autophagy, or recycling damaged parts of cells in the body, including the pancreas, is a benefit of fasting.)
    3) Occasional prolonged 'fasts' (fasting mimicking diet) of 2 to 3 days. I have got a lot of mileage out of these. When you come out of it at first, your blood sugar is more volatile rather than less, so it can seem like it had a negative effect initially, but after a few days the benefits become obvious

    These are the main things, but I also take a multivitamin, Vitamin D (due to the research on autoimmune issues and vitamin D) and turmeric. I take some other herbs as well, but I don't feel it's appropriate to list them because they can alter the balance in the body in different ways and are not necessarily a good idea. I have found they work for me, but it's a trial and error type of thing.

    I also started going to bed earlier. Apparently the circadian rhythm has a lot to do with health and various processes in the body, including autoimmunity. I feel a lot better having made this change.

    --

    Anyway, I just thought I would share my experience so far, the highs and the lows, in case anyone has any thoughts or finds any of it helpful. My goal is to keep the health that I have and hopefullly improve on it. It would be nice to get a better idea of where I stand with this problem, but it seems that that may not be forthcoming, and, it's not the main thing. 'My pancreas is walking with a limp' does not seem to be an idea that is very current in the medical diabetic community, which prefers 1 or 0, on or off, 'You have this' or 'you don't.' But it seems to me to best describe my current reality.

    Thanks for reading x and if you have any thoughts or suggestions, please comment.
     
    #1 erin40, Nov 25, 2020 at 10:04 PM
    Last edited: Nov 25, 2020
  2. EllieM

    EllieM Type 1 · Moderator
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    Disclaimer: T1 here so not an expert on LADA, I expect they will post when we're back in UK daytime.

    Well, if you are LADA (and we're not allowed to diagnose on these forums), it sounds as though you have reduced the carbs in your diet to a level at which your reduced insulin consumption can cope.

    Some endos seem to leave LADA folk off insulin until they tip over into full blown T1, others like to start them on low doses of insulin earlier, which may keep their islets producing insulin longer. It's not unknown for LADA folk to keep their pancreases working for years on a low carb diet.

    I see your point about the OGTT but will leave others to comment on whether one high carb meal will make any difference to the health of your pancreas. I find it puzzling that your endo thinks you don't have diabetes but tells you you can't eat oatmeal....

    And also note that MODY is a rarish variant of diabetes often seen in people with multiple diabetic family members. It's a bit weird, and doesn't always require insulin, and there are genetic markers for it (I think). T3c occurs when there is physical damage to the pancreas, so insulin production is reduced but not necessarily destroyed completely. So there are other options than LADA.

    But if you're not happy with your endo, have you considered getting a second opinion?

    Many of the folk on here have plenty of energy of keto/low carb diets, so am concerned that you are not feeling well. I assume you've had thyroid tests? (OK clutching at straws here.)

    If it is LADA then you need to keep a bit of an eye on your glucose and ketone levels, as if they suddenly go up you'll need insulin. (High sugar plus high ketones = time for insulin).

    Good luck.
     
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  3. Ronancastled

    Ronancastled Type 2 · Well-Known Member

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    Firstly, if you've been eating a low carb diet for almost a year then hit your pancreas with 50+ grams of carbs in a single sitting it's not going to react like a normal non-diabetic. Google "physiological insulin resistance", low carbers need to carb up in the days before an OGTT although the amount advised varies widely.

    A single spike from an OGTT is not going to do you any long term damage, many non-diabetics spike too, perhaps multiple times daily without complications.
    It's the long term exposure to hign blood sugar >7.8 (140) that appears to do the lasting damage.

    So I'd ask your surgery to perform a 75g OGTT, FBG & Hba1c then you'll know where you stand.
     
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  4. erin40

    erin40 · Member

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    Hi EllieM and Ronancastled, thanks so much for your replies. This is really helpful. Had not heard of type 3c diabetes and it is something that rings some bells with what my symptoms are, so I am going to ask my doctor to check about it. Also did not know about 'physiological insulin response,' though I figured my one high carb meal probably would not be giving normal non-diabetic pancreas numbers. The advice about going high carb for a few days prior to an insulin challenge makes sense. I know the OGTT is not supposed to be harmful, and maybe in most cases it isn't, but I found that my ability to tolerate sugar sharply dropped - and did not return - after a single episode of very sugary eating last year, so I don't want to risk repeating this. I might try to do a 'lite' home GTT though and see what happens, haha...

    Thanks again guys, :)All the best...
     
  5. ert

    ert Type 1 · Well-Known Member

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    Your low c-peptide isn't a concern unless you had high blood sugar also. It can't be interpreted independent of BS. I hope you decide to get an OGTT soon.
     
  6. erin40

    erin40 · Member

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    I'm not comfortable doing the OGTT. As mentioned, I had an episode where I ate a tonne of sugar and then the next day, I couldn't eat anything, and it did not improve from there. If you plotted it on a graph, it would be: eating a high carb diet one day, and then from then on, vegetables and meat only because anything more than that spikes my sugar and makes me feel sick. So, I would like to know my diagnosis but the OGTT is not something I'm prepared to do. I don't want to risk making things worse. I am not thrilled with not knowing if I am diabetic or not, but for the time being, the indeterminacy is something I need to tolerate and am willing to tolerate in order to keep things from potentially getting worse. Is it possible I am mistaken about this? Sure, but it's the course of action that I think is most reasonable & that I'm following.
     
  7. ert

    ert Type 1 · Well-Known Member

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    You could get antibody tests to see if you've had an autoimmune response in the last 6 months: GAD, IA2.
     
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  8. AlfonsoJones

    AlfonsoJones · Member

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    When eating carbs you shouldn’t be obtaining a post-meal glucose of 12mmol/l. I’d get a hba1c done. Any weight loss?
     
  9. erin40

    erin40 · Member

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    I know. That's what I thought. It was 12.7 three hours post-prandial, and 11.5 four hours post-, which is almost a fasting glucose (fasting glucose is five hours or more without food). My endo strongly felt that it was a false positive, because I swung from low carb to high carb eating all of a sudden and then got that result. I understand the reasoning, but I don't think it accounts for the whole picture, because, for example, I cannot even eat 2 tbsps of oatmeal without feeling wired all day long.

    But -- my hba1c was very low - 4.7, due to my diet. No weight loss, just a feeling of being hungry a lot of the time. My endo took my antibodies and they were negative, so there isn't really much I can do by way of figuring out a diagnosis unless I want to do the OGTT. (It's definitely not T2D because my insulin level is low.) The thing is though, I don't really need to know at the moment. I could push it (request more antibody testing), if I wanted to try an early intervention treatment for T1D like low dose insulin. But I don't really want this, at least, not enough to push strongly for it, and my endo is not in favour. And I'm actually feeling all right at the moment. So, I am basically in agreement with her suggestion to just keep doing what I'm doing with the low carb diet. I would like more clarity, and it's a weird position to be in, and I disagree with her assessment that I don't have a problem. But I agree with her suggestion just to continue doing what I'm doing, so, in the end, for the time being, it comes out as a wash.
     
  10. AlfonsoJones

    AlfonsoJones · Member

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    I know GADs have a false negative 1/3rd of the time.

    Do you know if you had a c-peptide? That’s an indication of how much insulin your pancreas is making.

    Are you able to tolerate any carbs at all? That’s the only solution I see.. have some carbs for a few days and see if your glucose increase. Also do you have access to a ketone meter? - you’re likely having ketones now due to the low carb diet but if you eat carbs and the ketones stay then you know your Pancras is on it’s way out
     
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  11. AlfonsoJones

    AlfonsoJones · Member

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    Seen the c-peptide comment further up. Hmm it does make me wonder whether your insulin production is decreasing but your low carb diet is compensating for it. I’d either bring in some carbs or continue to watch your fasting/morning blood glucose and monitor if it starts to increase.
     
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  12. erin40

    erin40 · Member

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    Thanks, this is what I think is happening, my insulin level is low but my low carb diet is compensating for it without giving me high blood sugar. Thanks for the suggestion about ketones. It looks like this may be the only way I have right now of getting any info (short of doing a glucose test). -- I've done GAD, insulin level, c peptide, islet cell autoantibodies and fasting morning glucose and a1c. So I may get a ketone meter.

    As for the GAD and false negatives, ouch - that's not good news. My endo did mention that the test sometimes shows up as positive later on. If I have an autoimmune issue, it doesn't currently seem to be that bad, as if anything my problem seems to be getting a bit better. But it's something to keep an eye on, for sure.

    Cheers, thanks a lot for your help!
     
  13. Technician87

    Technician87 Type 1 · Member

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    You keep bringing up the point that oatmeal makes you feel unwell for long periods of time, even a small amount of it? Could you be gluten intolerant? Coeliac disease and diabetes are like very good friends apparently. The auto immune response to the gluten protein in your intestine can make the uptake of nutrients difficult. This is known to cause rise in blood sugars and insulin not being able to perform its job?? This would also go hand in hand with you being fine on your low carb diet then feeling dank when you reintroduce them. Just a thought and maybe something to discuss with your medical professionals. Hope you're ok and stay safe. X
     
  14. Swillbos

    Swillbos LADA · Active Member

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    'First do no harm' is a principle that seems to be completely disregarded when it comes to the OGTT, at least for people with type 1.

    I think it is unusual for type 1s to have this test. Younger diabetics and full-blown LADA cases tend to present with serious and potentially life-threatening symptoms requiring immediate use of insulin, OGTT absolutely contra-indicated! I use the term 'full-blown' as there is a fairly wide spectrum in the LADA community with respect to the speed of pancreatic decline.

    I am reasonably typical of the slower onset end of the LADA spectrum and like a significant number I was initially identified as Type 2. My diagnosis did involve the OGGT, I was only re-diagnosed as LADA when my low carb/exercise approach began to fail quite spectacularly after a number of years of success: constant readings in high teens, unintended weight loss and ketones....Now you may (or may not) be in this camp and your change of lifestyle is currently so effective that it is only when and if it unravels that you may be diagnosed as LADA. It may also be that you are Type 2 and your keto lifestyle is keeping your bloodwork on the straight and narrow, and this need not change. The OGTT would not necessarily confirm whether you are Type 1 or Type 2.

    There is a very strong correlation between LADA and other autoimmune diseases (thyroid in my case) and any evidence of this might tilt the balance of evidence towards LADA/Type 1 rather than type 2.

    Anyway, good luck with your investigations!
     
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