My son was recently dx’d type 1 in August. He’s still in the very early stages of trying to manage his diabetes with insulin, taking both Lantus at bedtime and using Humalog before eating. I’m very involved with helping him make the best choices for his management. We have embraced Bernstein’s concepts for living successfully with diabetes. I’m very grateful to have read a number of posts regarding the resistance and even hostility that nutritionists and endos have toward following low carb diets. My son met with his endo yesterday at Joslin. Our main concern was to reduce the variability in the daily glucose levels. My son has had some unexplained afternoon highs in the 190 range and I thought perhaps the doctor could provide us with some insight as to what might be going on. Instead, she suggested that his overall readings were too low (avg. 107) and perhaps he didn’t need to bolus insulin before eating. Of course we are not going to follow this advice as he is not yet achieving normal bg levels (80-90) consistently and the variability needs to improve. Of course the next question by the endo was what does my son typically eat for meals. We were cautioned by this doctor that my son is not eating enough carbs and as a consequence another appointment was made on our behalf with the nutritionist, another lowfat, high carb advocate.
I really believe that this extreme pressure to include lots of grains and to cut saturated fat in the diet could be killing diabetics. One friend of mine whose husband died horribly from diabetes related complications told me emphatically that a low carb diet would cause severe hypoglycemic attacks that are more harmful than maintaining high bgs. In other words, she was lead to believe that keeping an A1c at 7 or slightly above was necessary for safety reasons. Another diabetic friend who suffered a debilitating stroke at the age of 40 was equally adamant about the necessity of following a diet with carbs as the highest percentage of the total diet.
Anyway, a word to the wise for my fellow newbies - reveal as little info as possible about one’s low carb diet when talking to medical professionals. My son goes to Joslin which we have found to be a good place to go as far as learning about new advances in treatment. My son has the opportunity to be in a research project on Beta cell preservation which could be of great benefit to him, but as far as the day to day management of his diabetes, we are on our own.
I was also diagnosed in August. My endo is not happy with how "low" my BG tends to be during the day (70s and 80s) and keeps telling me to lower my insulin, both at meals and before bed even though I told her I was happy with my BG levels. It's driving me crazy. I'm ignoring her emails now and continuing to inject the amount of insulin that I felt was working for me. I definitely did not tell her about eating low-carb. I did mention that I'm slowly losing weight which is when I received an email with her saying she "hopes" I'm not eating low-carb and that I should eat at least 45g of carbs per meal. Yeah right!! I have been ignoring the calls from a diabetes education centre, because driving 30 minutes just for me to sit there and ignore a dietician is a waste of my gas, time, and money. I've noticed that the more information I divulge, the more stressed out I end up.
I've been enjoying funny pictures put together by people with diabetes. I can't help but notice that a bunch of them say things like "Yes I can have sugar." "Yes, I can have alcohol." "Yes I can eat that." etc, while another good chunk are also about having high BG and celebrating when it's 140.... And all I'm thinking is "I guess you CAN'T (or shouldn't) really eat that despite what the ADA/CDA says." :/ It's just puzzling to me. I am not going to act like I have a healthy, normal pancreas... Except on my birthday, Christmas and Easter :P
CaryJ,
GOOD FOR YOU for being such an advocate for your son! You should be commended for taking such a proactive approach and for critically analyzing things that you hear from your physicians and then taking the approaches that you feel is healthiest for your son. Your son has a lifetime ahead of him of dealing with diabetes, and it's so wonderful that you are starting him off with the goal of achieving NORMAL blood sugars (and resisting the garbage that diabetics should maintain anything higher than normal). My kids are in elemantary school with so many children with nut and gluten allergies, so it will hopefully not be too difficult for people to understand that your son needs this low carb diet to stay healthy.
Wonderful that you have access to the Joslin; wish we lived closer so that I could be seen there. As it is, I got so much pushback from my endo about the low carb approach that I just stopped going to her all together. My Nurse Practitioner is much more supportive and has taken the lead on my care (basically just prescribing me the insulin/paraphanelia that I need) and also taking specific blood chemistry labs when I need them.
I've been following the Bernstein approach now for 2 years; I've had my ups and downs, I was much better about following it to a "t" the first year and I've slipped a bit (I'm eating carrots and tomatoes...GASP...I've binged on some high carb stuff sometimes too). But overall, if you consider it LIFELONG approach, it is really the way to go. My HBA1C my first year got down to 4.6%, now it's up to 5% but I'm still ok with that.
You get the Mother of the Year award! :) Good luck.
Has your son split his lantus dose? If not, that could be explaining the afternoon highs. Lantus DOES NOT last 24 hours, although I'm sure the folks at Joslin are telling you it does. He should take half his dose at bedtime and half his dose in the morning. You may have to tweak it more than that. I have to take a bit more at bedtime than in the morning, but half and half is a good place to start. Also- if you ever decide to fire the Joslin people, family practioners, DO's and naturopaths can be much more supportive than endo's. Of course, you should interview them and figure out their view. If naturopaths are allowed to prescribe insulin and take insurance in your state, they might be your best bet. I know two here that recommend Bernstein. In my state, they cannot prescribe so I see a family practice doc. She basically has no clue about Bernstein so she isn't exactly helpful, but she's supportive and not at all critical. My A1C's are always in the 5's and I'm the "best controlled diabetic she's ever seen."
Thank-you GlacierLily. Yes, we were really in a quandary as to why the late spikes. We will try splitting the dose of Lantus. I did ask about that, but the endo told us that Lantus acts for 24 hours in contradiction I might add, to people's personal experiences on this blog.
I am quite involved in my son's diabetes management. It is sometimes awkward because he is an adult (34), but if you can read between the lines, he does need my involvement. My situation is more akin to a mother dealing with a teenager. A mature 30 something would probably not welcome or need this level of involvement from a parent. I also like the naturopath idea. To be fair, the present team is not stellar, but they don't push drugs such as flu shots, statins or other drugs I find questionable.
The ignorance of recent research into dietary matters by Healthcare professionals is astounding and Scandalous! Simply ask them to show you the research proving that any dietary carbs are necessary and name the specific deficiency diseases caused by lack of carbs. Equivalent information is available for proteins, and the Essential vitamins!
I admire your son for aiming at NORMAL blood Glucose right from the start. I'm a T2 andd aim there too. Of course we sometimes miss. Then it's time for "pick yourself up, dust yourself off and start all over again."
Only MORMAL blood glucose is SAFE. It is known that people who are not thought to be diabetic,[ I bet they actually ARE] but have elevated blood glucose are subject to "Diabetic Complications"
PS My husband was diagnosed T1 at about 28. We'd been married some years by then and he didn't take care of himself properly and self monitoring wasn't as good then either [he's now 65}
He now has multiple complications, 2 Charcot feet, which ulcerate quite often, retinopathy, which has led to virtual loss of sight in 1 eye and kidney disease. He's currenly on his 4th week of multiple antibiotics for an infected foot ulcer and bladder infection. He's feeling pretty bad and through not eating has lost over 20lb in weight in that time. He could stand to lose it, but we've been running a balancing act betweeh hospital and GP appointments and keeping BG under control. We're trying to avoid having him admitted for IV antibiotics!
If he'd done a better job 35 years ago, he might not be in this state now.
He's a REAL object lesson.
Hana
First, let me echo what others have said here -- major kudos to you and your son for approaching this pragmatically and not just blindly and uncritically accepting all "professional" advice -- much of which is just plain wrong. Ultimately, the most powerful weapon you have is your determination to do your own thinking, make your own decisions, and aggressively manage and control your son's condition.
Another point worth reinforcing is that Naturopaths and DOs, as a general rule, will tend to be more open minded and willing to work with you than classically trained MDs and CDEs. There are exceptions on both sides of that fence, of course -- there are always exceptions -- but it's a pretty good rule of thumb. It was my Naturopath who steered me to Bernstein, as I think someone else here said as well.
As far as the low carb debate is concerned, anyone with open eyes can see that the evidence is in and the verdict has been rendered. It's been oh, roughly six months since I went low carb and about three months since I started insulin, both according to Bernstein's recommendations. In that short time my A1c has gone from 7.1 to 5.7. When we check it next, in January, I expect it to be lower still. (Back in the day, when Bernstein would stand up at a conference and say that diabetics are entitled to normal blood sugar, he would actually get booed! Crazy.)
Here's a nice, pungent commentary on the professional community's attitude toward carbohydrates:
http://www.nmsociety.org/docs/FunFacts/ADA%20Carbs%20to%20diabetics...
I had to shop around to find a doctor who would treat me as a partner and not a wayward delinquent, but I did find one and we have a terrific relationship. (He's a DO, by the way -- see above.) I actually feel sorry for him in some ways; he said yesterday that many of his T2 patients are basically in denial, take a lackadaisical approach to management and mostly do what they please. He tells them "look, if you keep doing this, in 10 or 15 years you're going to be in serious trouble," but it mostly falls on deaf ears. Sad, and it has to be discouraging too.
I don't even particularly like my endo, and oddly his reaction to a low carb diet was a refreshingly realistic one.
He said that there's kidney damage risk from the high protein, but that this hadn't been proven anyway. Higher fat diets tend to raise cholesterol, but again, this hasn't been significantly proven either.
I was given the all clear to try it. My A1C lowered a bit, and I've since started statins anyway (they've been trying to get me on them for years as a precautionary measure, but I could never see the point if I had no issues), so I feel I'm fairly covered to run with it for the time being.
The only thing I don't enjoy about my low carbing, is that when I go off of it, carbs tend to act like rocket fuel and don't quite equate in the way they do when I'm eating them with every meal in larger amounts. It does almost make me wonder if my insulin sensitivity is decreasing by eating this way, even though I'm using less. It seems to do less.
Perhaps it would return to normal if I began eating 'normally' again.
I had tried low carbing once but didn't have my continuous glucose monitor back then. With this thing I feel I'm able to see how stable things truly are. It's quite incredible just how predictable levels are when I get it right.
I say go for it, and try to find an endo who won't make you feel ashamed for trying something that works, even if it bucks a slightly blinkered method system.
Hi CaryJ:
You are doing the absolutely right thing. I find the level of ignorance in the medical community about blood sugar control infuriating. My own experience with my local endo who misdiagnosed me as a Type 2 initially in May led me to recently becoming a patient of Dr. Bernstein. His approach works, and works brilliantly. My A1c was 8.8% diagnosis. Last week it was 5.3% and at the current trajectory I fully expect to be in the under 5% range soon. I emphatically agree with his position that "people with diabetes are entitled to the same blood sugars as non-diabetics," and it is entirely achievable.
Based on what you share about your son's regimen, maybe you can glean some modifications on how Dr. Bernstein is treating me. My original endo had me on Lantus too. Others responding to your post are correct; it is not a 24hr insulin. Bernstein has me on Levemir instead and I take two doses, one in the morning and one at bedtime, and I have no spikes. Also, I have enough remaining beta cell function left that through a combination of his exercise regimen and diet, I rarely ever need to inject Novolog anymore. When I do, they are tiny doses: 1/2-1 unit. He writes that most Type 1's have some Beta cell function and he's only ever had two patients who've lost all, one being himself. And he believes that it is possible to preserve that remaining function indefinitely through tight control.
Had I not challenged my original endo, I would have ignorantly plodded along on oral medications until I completely burn my pancreas out. By the way, she maintains that 160mg/dl after meals is "good control."
His diet is key. Not just the low carb, but how you eat. What is important is to remain consistent on protein and carb intake from one day to the next. What you eat is up to you, and you can switch as you see fit, just maintain the same quantities. I consume 5oz of protein in the morning (3 eggs, 4 slices of bacon), 11oz of protein at lunch and at dinner (usually fish, beef, chicken, etc. and approx half a plate of veggies: broccoli, Brussels sprouts, asparagus, etc). My BMI is optimal and my weight rarely varies more than a pound either way. Please note, it is key to tailor this to your specific metabolism such that it doesn't result in hunger between meals and unwanted weight gain or loss. It's good to get a food scale initially, but once you do this for a while you can start to eyeball portions pretty accurately. The logic is that through this consistency you can then more easily fine tune your insulin/medication regimen because you remove the variability that different portion sizes can drive in your glucose levels.
The other key thing that I learned was how effective his Glucograph sheets are in fine- tuning medications, food and exercise. I work in IT and my initial reaction to his approach was thinking how quaint and archaic it was, believing that the multitude of smartphone apps and online tools available to record and track have long eclipsed this approach. However, it's refreshingly simple, logical and effective.
The things I mention here are explained in great detail in his book, which I assume you already have. I've downloaded it from the Amazon Kindle store and keep it as a reference on my iPad/iPhone and computer. Two other books I've found immensely helpful are from Jenny Ruhl (who also posts on this site), Diet 101 and Bloodsugar 101, also available for Kindle.
Meeting with Dr. Bernstein was an inspiration. He is nearly 80 and is undoubtedly the healthiest person his age I have ever met, and he is living evidence that all of us have the ability to live long, healthy lives free of diabetic complications. I refuse to allow any ignorant, arrogant or uninformed medical professional ever to stand in the way of that, and you're doing the right thing by taking the same approach.
Christopher
I envy you having the ability to see Bernstein personally. But as someone else posted here recently, everything he knows is in his books, so as a "next best thing" they rank pretty high. Still, you're very fortunate to be able to consult the good doctor directly.
I too work with computers and thought the idea of a form seemed a little quaint. But for a number of reasons I find that it is indeed the optimal solution. I don't use Bernstein's form, however. It calls for a number of things I don't need, plus which I just can not write legibly enough to include everything I want in those teeny, tiny boxes. So I designed my own and it works great. Different strokes.
Bernstein's book is my bible. I keep spare copies on hand to give to people where I think it will do some good. Matter of fact, I loaned one to my PCP on Friday, pointing out a couple specific chapters I thought might hook him. He was very receptive, I suspect in part because he can't disregard the results I am getting (A1c down from 7.1 to 5.7 in 3 months).
I agree emphatically that consistency is key. When I eat consistently, my BG behaves in a much more predictable fashion. No possible doubt about it.
YDMV, however. The only significant variation I see between your experience and mine is that I am always hungry, regardless of what I eat. I haven't yet found a combination that stops that. But that's me, not necessarily anyone else. The upside is that self discipline improves with practice, so I'm getting pretty darn good at it.
Hi Christopher,
We are so appreciative of the helpful suggestions. We have just tried using an additional Lantus dose taken in the morning which seems to have prevented the usual afternoon spike up to 190. We did not get a prescription for Levemir which acts somewhat differently, but I figured we could make do with the Lantus for now. I think what may have been happening could be similar to what Dr. Bernstein calls the Chinese restaurant effect. My son has been getting extremely hungry by the afternoon. Even though he hasn’t been snacking it could be possible that the liver is dumping glucose in response to the hunger?
He is a very picky eater. He only likes poultry, fresh vegetables, peanuts and cheese. I’ve been building menus around these items. I’ve been following the exact same low carb menu plan myself, although I like a wider variety of foods. For instance, I will have fish while my son has chicken. I’m perfectly fine eating this way and I have been losing some unwanted belly fat. I’ve stopped worrying about the lack of variety in my son’s diet since he doesn’t seem to mind eating the same things day in and day out. He sometimes doesn’t get enough calories which could mess with keeping the bg’s within a narrow range. I’m not sure.
We are keeping to the 30 carb range per day, but he still seems to need about 3 to 4 units of humalog before meals to keep the bgs between 80-90. I’m a little surprised that he seems to need so much insulin as his c-peptide levels were normal. Perhaps this test is an unreliable indicator of endogenous insulin. We’ve only been at this for 2 months so I’m assuming that consistency and perhaps lowering insulin needs will be a gradual process. Did you achieve consistency right away when you started your present plan or did it take a few months?
Hey CaryJ
That's good to hear that you're making progress in controlling afternoon spikes with an additional morning dose. What's happening to your son in the afternoon is very common for Type 1 diabetics, including me. When I was normalizing my glucose levels I dropped from 200lbs to 175lbs (moderately overweight to ideal weight. I'm 6 feet tall) through the low-carb diet. During this phase I never got hungry between meals. Now that I've leveled off, however, I found myself getting ravenously hungry about 3hrs after lunch. Type 1's have an impaired ability to produce Amylin, which as stated in Wikipedia "Amylin plays a role in glycemic regulation by slowing gastric emptying and promoting satiety, thereby preventing post-prandial spikes in blood glucose levels." It is tied to insulin production, and if you don't produce enough or any insulin, you won't produce enough Amylin. In short, it is essential in making you feel full after a meal. Dr. Bernstein devotes a portion of his book to this topic and talks about various medications such as Byetta, Victoza and others that assist in not only regulating blood sugars, but also for "off label" uses in appetite suppression by triggering similar physiological effects to Amylin. I'm currently using low doses of Victoza with lunch and dinner and it's made a huge difference.
Your son's Humalog doses strike me as on the high side, but everyone is different. Factors like weight and insulin resistance can play a role. I did not achieve consistency right away. In fact, I was using far too much insulin and constantly adjusting up and down. Consulting with Dr. Bernstein gave me the insight into why keeping my proportions of protein to carbs and portion sizes the same from day to day is so important. I've been able to cut my total 24hr basal dose from 26 to 14 units, and cut out my pre-meal 2 unit Novolog doses entirely. Every so often I might have to use 1/2 unit of Novolog, but it now an infrequent exception. Also, strenuous exercise makes a huge difference. I started with just doing 30 minute walks in the morning. Now I try to get to the gym 3-4 times a week to run on a treadmill for 30 minutes and get my heart rate at an average of 150bpm. Next week I'm meeting with a trainer to build a complementary anaerobic resistance program to my current aerobic activity. Dr. Bernstein is a strong advocate of this, and I've seen how exercise has really helped me with blood sugar control. I see 48hrs of improved readings through one 30minute run in the morning.
Your son's food preferences might be limited, but if he has the right balance of proteins and vegetables, he should be fine. A word of warning, however. It could be the peanuts that are driving the spikes too. They carry a lot more carbs than you think, and he could be eating a lot more than he realizes. They have a nasty way of rearing their head in elevated blood sugars many hours later when I eat them, so I tend to avoid them and most other nuts.
I hope this helps.
Christopher
Hey David:
You're absolutely right: Dr. Bernstein follows the methodology in his book exactly. Hence, even if you're not a patient of his, you can benefit from his approach. I was surprised to see on his website that he is still accepting a limited amount of new patients, so I thought I'd give him a call, and 4 weeks later I was in his office.
Your hunger is not uncommon for anyone with impaired insulin production. As I shared with CaryJ, your hunger could be the result of limited Amylin production, which I'm treating quite effectively with Victoza. Dr. Bernstein writes about this in his book along with some other medications that achieve similar results like Byetta.
Christopher
As a matter of fact I do plan to look into exenatide, liraglutide, and DPP-4 inhibitors -- eventually. One of my cast iron cardinal rules is, only change one thing at a time. Otherwise it's impossible to know which change produced what effect.
David,
I don't remember you in any of my science classes :o) That is something I emphasised heavily in my teaching. I've often seen published papers, which miss on that. Including one which advocates a high carb diet for diabetes!!!!!!
Hana
Hana,
Having lived my entire life on the west coast, it seems unlikely that I would ever have been in one of your classes . . ;)
Seriously, it's just part of my basic approach to problem solving. (Bernstein and I each come from engineering backgrounds; probably why we both tend to deal with things empirically.)
David
Hi,
We have just started to keep records of food intake. I think I didn't realize the importance of keeping a food diary.I use sugarstats.com to graph the bg readings, but I have been too lazy to list food. We just got a food scale and yes, we were underestimating the portions. Sitting down and eating peanuts out of the shell can add up to quite a few carbs as you point out.
My son is 6'1" at 168 lbs, not a bad weight, but he certainly could use more muscle mass. I think building muscle and overall endurance could make a huge difference. Dr. B is a living example of maintaining a high fitness level at an advanced age through weight training and intense cardio.
I find it puzzling that the doctors do so very little analysis of their patients. It seems to me that the total functioning of the pancreas should be analyzed. The amount of Amylin in the body should be assessed as well as anything else that is potentially compromised. The alpha cells might not be functioning properly either. I did get some copies of my son's lab results. I like to see the actual numbers, titers, normal ranges etc. some I have not received such as the c-peptide level (was just told it was normal). All this information should be discussed with the patient to get a better idea of the level of damage that uncontrolled bg's have already had on the body.
Dr. B did discuss the potential benefits of taking drugs that would delay stomach emptying. I would hesitate to use any of these drugs such as Byetta especially if one has gastroparesis. I think it is possible to take Amylin itself (marketed under the name Simylin?) My son's endo said that Simylin was the same thing as Amylin - could be wrong. Anyway, all the suggestions have been most helpful.
You are correct about Symlin. It is the medication equivalent of Amylin. (The technical name is Pramlintide; Symlin is the trade name.)
Hi CaryJ
It's good to track and log glucose, food and exercise, but what really helped me when I met with Dr Bernstein is that it is not really that important to actually write down everything you eat, but rather be consistent about what you eat and when you eat it. This is what he explains in his book under "negotiating" a meal plan. In short, what you need to do is assemble a list of all the allowable and preferred items you want to consume, and then put together a menu including these items that results in no more than 6g, 12g, and 12g of carbs for breakfast, lunch and dinner, respectively. The protein portions are sized based on what carries you best through the day. Once fine tuned, these should remain the same each day. By way of example, I consume 5oz, 12oz, and 12oz for breakfast, lunch and dinner, respectively. Once you lock this down, you remove almost all variability that your diet will have on your glucose levels. You can mix and match the actual food items as you see fit, just keep the protein and carb values constant. Ideally, try to avoid snacks in-between meals. Through this methodical approach, you can then focus on other variables and what effect they have, such as exercise and medication, and then fine tune them accordingly.
I find Dr. Bernsteins Glucograph charts to be simple and extremely effective in data analysis and optimizing all the variables. I highly recommend them. I also use dbees.com to log my data. It has the benefit of entering data from any smartphone or computer and has some cool charting and trending functionality. Best of all, its free.
I've found that getting the diet straight is the most important variable in the equation. Exercise is clearly also important, but many people are not thrilled about the idea of intense work outs, which is also ok. Even 30 minute daily walks make a difference.
I share your frustration regarding Dr's arrogance and haste in reviewing tests. You are legally entitled to copies of all your blood and other tests. I demand copies of everything. I then go online and educate myself as to what each test is and means. Most of it you can learn about yourself. The remaining ones I'll follow up with my Dr. I would find the statement about C-Peptide highly dubious. If it were normal, that would suggest he's producing sufficient insulin. If that were the case and his glucose levels are high, that would suggest insulin resistance, and hence Type 2. I believe you said he was diagnosed as a type 1. Be sure to get copies of this test and demand to speak with a Dr to explain this, not some harried assistant who just reads you the values over the phone.
I'll share a trick I learned in my own self-education process, and also how I successfully challenged my initial Type 2 diagnosis with my original endo. Many Drs will just give you a lab order form to take to a lab for your draw. I did my research (much of which came from Jenny Ruhl's website and book, Blood Sugar 101 and bloodsugar101.com), and checked the boxes for additional tests for GAD and Islet antibodies, as well as C-Peptide. They're so busy in most Dr's offices, they'll never remember what they actually ordered. The antibodies came back positive and the C-Peptide very low, which is typical for a Type 1 LADA. My point here is that don't be at the mercy of their prejudices and oversights. You can take active control in answering your own questions and doing your own research.
Yes, I believe there are multiple options for addressing an Amylin deficiency. However, before exploring these options, I would consider locking down the meal plan first. Your son's hunger might also be the result of varying portion sizes, meal times and meal quantities. Once this is stabilized, this might no longer be an issue.
Christopher