The Most Valuable Lesson I’ve Learned about Managing Type 1 Diabetes
A severely low blood sugar landed me in the ER one year ago today.
Prior to January 29, 2011, my approach to managing my Type 1 diabetes, at least with regard to my diet, pretty much fell in line with what was recommended by my doctor, which followed the current guidelines (or lack thereof) promoted by the American Diabetes Association (ADA). For example, in questioning my doctor about the foods I was eating, I once asked her, “Are there foods I should be avoiding completely?”
“No, as long as you inject the appropriate amount of insulin for what you are eating. Now, that doesn’t mean sit down and have five or six slices of pizza. You have to keep things within reason.”
To many Type 1 diabetics that advice may sound familiar. You are basically allowed to eat what you want as long as you shoot the correct amount of insulin for the corresponding amount of carbohydrates. Numerous Type 1 bloggers and parents of Type 1 children have devoted entire blog entries and message board posts to vehemently defending this position, often showing their disgust with an “uneducated” observer who suggests that they shouldn’t be eating certain foods.
“Should your daughter be eating that piece of birthday cake? I thought she had diabetes.”
“You have Type 1 diabetes? It must be hard to not be able to eat sweets.”
“Wow, diabetes must suck, you can’t eat anything good.”
“It’s unfortunate that your son has to live with that horrible disease.”
These are examples of the types of comments that have led to outrage among certain members of the Diabetes Online Community (DOC). Of course, prior to last year, I would have been frustrated by those comments as well. I had been giving myself insulin injections at least five times a day and pricking my fingers more than that, yet I was trying to live like I was normal. I was trying to live like I didn’t have a disease. After all, medical advancements have given us insulin. We’re not living in the dark ages anymore. The main difference between me and a non-Type 1 diabetic is that they have a working pancreas and I have to shoot insulin before meals, right? That means I can still be normal, doesn’t it?
If you traverse the posts of many of those same defensive bloggers, you’ll notice that they also suffer from complications that include nerve damage, retina damage and more. Ten years down the road (or less), with the same attitude, I imagine this blog would read much like theirs, a handful of well-intended posts speckled with the evidence of emerging complications and growing frustration. And as I would be left wondering what I did wrong, my endocrinologist would likely continue to tell me that my A1C was in a good range for being a Type 1, and reading countless issues of the ADA’s Diabetes Forecast magazine (dubbed “The Healthy Living Magazine”) would ensure me that my diet was appropriate. All the while, this same advice would be slowly killing me, like it has been doing to Type 1 diabetics for decades now.
In my opinion, the most important thing that I’ve learned over that past year is that ARTIFICIAL INSULIN CANNOT MIMIC EXACTLY A WORKING PANCREAS. What does this mean? It means that believing the all too common misconception, even among healthcare professionals, that injected insulin can adequately cover meals with either large amounts of carbohydrate or fast-acting carbohydrate, is only guaranteeing us a slow, incremental, “silent” death from the devastation of diabetic complications. In simpler terms, THERE ARE FOODS THAT TYPE 1 DIABETICS SHOULD NOT BE EATING. Dr. Richard K. Bernstein, himself a Type 1 diabetic, makes the following crucial point, “Injected insulin – even with an insulin pump – doesn’t work the same as insulin created naturally in the body.” Even with its Dual Wave Boluses, etc. that release an insulin dose in installments over time instead of all at once, an insulin pump cannot prevent the ravaging spikes that occur after consuming foods containing fast acting carbohydrate or heavy amounts of carbohydrate. In an attempt to follow Dr. Bernstein’s recommended diet, I have given up breads, pasta, cereal and flour-based desserts like cake, pie, etc., to name a few of the foods I now completely avoid.
As a result, I have lowered my A1C and have managed to mostly avoid drastic swings in my blood sugar, resulting in my doctor’s office to comment that they have never seen such steady blood sugar levels on a CGM (Continuous Glucose Monitor) graph. Despite these positive steps, I still have a lot of work to do in managing my Type 1 diabetes. I want to exercise more regularly, if not daily. I need to eat smaller meals but more often, which will help me to better manage the carbohydrates that I’m consuming at each sitting. I need to stop cheating here and there by having two bites of this or a couple tastes of that. Doing so during meals only complicates the amount of insulin I need for the entire meal. For example, if French fries come on a salad at a restaurant, I’m often tempted to have a few, despite picking the rest off.
TYPE 1 DIABETES IS A DISEASE. I AM NOT NORMAL, NO MATTER HOW MUCH I WANT TO LIVE LIKE I AM, ESPECIALLY WITH REGARD TO MY DIET. To quote poet Charles Bauldelaire (as well as a certain 1996 film), “The greatest trick the devil ever pulled was convincing the world he did not exist.” In many ways, this reminds me of diabetes. Most days it doesn’t readily show its face. It often lingers in the darkness, waiting years, potentially decades, before it reveals its most damaging effects. I know that truly accepting my disease, educating myself with right knowledge, and acting on that knowledge every day of my life is the only way that I have any chance at beating this to live a long, healthy life. It surprises me that there are those out there who don’t believe that this is possible. Some have accepted diabetes more as a boulder crashing through their lives instead of a curve ball that they can still swing at. For nearly all Type 1 diabetics, to swing or not to swing is all a matter of having the will to make the right choice, despite how difficult it is.
My name is Kevin Lang and I am a Type 1 Diabetic who was diagnosed in May of 2004 at the age of 27. My last A1C was 6.0 in May 2015. I used to use daily shots of Lantus and Novolog to control my blood sugar until I switched to the MiniMed Paradigm Revel Insulin Pump in February 2011. To learn more about me, follow the about link in the menu bar.
Im sorry to say this but i think youre just looking for sympathy and that fact that my 4 yr old was diagnosed at 1 1/2 does not make me feel all that bad for you. Saying ITS A DISEASE I AM NOT NORMAL, is pretty weird considering when you have a child with it, you’re constantly trying to make them feel normal
Kristen, “drawing sympathy” might be your interpretation of the post, but that was in no way my intention. You’re also quoting me out of context. The full quote is “TYPE 1 DIABETES IS A DISEASE. I AM NOT NORMAL, NO MATTER HOW MUCH I WANT TO LIVE LIKE I AM, ESPECIALLY WITH REGARD TO MY DIET.” The point of that is that I had to come to the hard realization that my previous diet and way of living wasn’t working. By fully coming to terms with the fact that I had a disease, and fully realizing the consequences of not properly taking care of myself, I was able to adjust and stick to my diet, etc.
If I continued to try and live like I was “NORMAL” with regard to my diet, I would end up with numerous medical complications down the road, likely everything from macular degeneration to never damage and worse. I’m in no way saying to not try and make your daughter “feel normal”. I was referring to myself and coming to terms with my own disease. However, Type 1s and parents of Type 1s who refuse to face the true realities of the disease and what really needs to be done with regard to diet, are in effect ensuring that they or their child has an anything but “normal” future.
The truth is that Type 1 diabetes is difficult. It’s a worry-filled, guilt-ridden balancing act and for a child and a parent of a Type 1 child, it’s exponentially tougher. I consider myself lucky for having been diagnosed in my 20s. I didn’t have to grow up with it and watch the kids around me eating whatever they wanted. However, I’ve heard too many older Type 1 diabetics say the following, “I wish I could go back and tell the younger me to face the hard truths about my disease and take better care of myself.”
Kevin,
I was diagnosed 4 weeks ago, type 1. I am 41, very healthy, very motivated to stay that way. Between the internist, diabetic educator and nutritionist noone will give me a straight answer of what I can’t have. I feel like I am all alone. Currently just on Lantus at night, BG ranging from 70’s to 240. Plan is to start covering meals next week. I am probably honeymooning because my sugars did respond to a very low carb diet and a small Lantus dose. I am worried about how long this will last. I wish I could talk to someone who gets it. I am scared and I don’t want neuropathies or any other complications. I plan to read your blog for a little insight. Thanks.
Heather, I definitely know how you feel. I remember asking my doctor, “Are there any foods that I clearly shouldn’t eat?” Her response was, “No, so long as you shoot insulin for them.” She went on to add, “Well, don’t eat something like five slices of pizza at a time.” I have come to learn just how wrong her answer was. Unfortunately, I blindly followed that advice for several years. The truth is that Type 1 diabetics shouldn’t be eating the majority of what’s on supermarket shelves. Basically, the less carbs you eat per meal, the easier it will be to stabilize your blood sugars and to keep them at a normal level.
Also, as Dr. Richard K. Bernstein (a Type 1 himself) states in his book “Dr. Bernstein’s Diabetes Solution”, if you can stabilize your blood sugars while you’re still in the honeymoon phase, you may be able to prolong the honeymoon phase, possibly indefinitely. I was never told this. In fact, my first doctor actually mistakenly diagnosed me as Type 2, despite me being in good physical shape. Needless to say, my honeymoon phase didn’t seem to last too long, nor did I make the necessary adjustments to my diet to possibly prolong it.
As far as what you shouldn’t eat, I recommend reading the book I mentioned above, “Dr. Bernstein’s Diabetes Solution”. His diet will seem extreme, but his idea of small numbers (less insulin for fewer carbs leads to less blood sugar swings) makes perfect sense. He recommends no more than 12 carbs per meal. This can be very difficult to pull off, especially for dinner, but I try to use the diet he recommends as a guide to what will work best, even if I’m not in full compliance yet.
The frustrating truth is that most endocrinologists see roughly ten times more Type 2 patients than Type 1s. Thus, their approach to treating Type 1 diabetics is often too similar to how they treat Type 2s. In addition, in my experience, they often lack knowledge when it comes to treatment advancements, like CGMs, etc. They also follow the ADA’s diet recommendations, which is slowly killing Type 1 diabetics, since the ADA doesn’t put strict restrictions on carbohydrates, etc., and has a “whatever works best for you” attitude.
Most complications (other than the dangers from extreme highs and lows) usually develop from years of unstable blood sugars, so don’t let that stress you out too much now, instead let it be a warning to keep yourself in check. Use this time to get your treatment plan and diet in place. It won’t be easy, but I find that I feel less guilt and am happier when I’m doing good with my diet, exercising regularly and facing diabetes head on.
All the Best,
Kevin
Hello Heather
I am the parent of an 8 year old boy who has been Type 1 for almost 2 years now. He is on an insulin pump. I have spent countless hours surfing the internet for information about how to best control his blood sugars, and reduce the long term risk of complications. After all, he has a long way to go with this disease.
What I stumbled upon, like Kev, was Dr Richard Bernstein, a true pioneer and in my opinion, genius in the management of diabetes. Essentially Dr Bernstein advocates the use of an extremely love carb diet to reduce the need for insulin and to help keep blood sugars in a normal range. As a result, beginning last June, we started my son on a modified low carb diet. He gets no more than 30 -35 grams of net carb (after deducting finer carbs from total carbs) per meal. His blood sugars , while certainly not “normal”, are far better than they were prior to the diet, and his last A1C test this Fall came in at 6.7 %, which for a child with Type 1 is excellent. So I am a believer in this diet.
There is a great deal of literature, including many cookbooks, available about living low carb. It is really not that difficult and if you are prepared to do a litle creative cooking, you can prepare many items in a low carb way. For example, you can make low carb cheesecake using nut flours for the crust. There are also breads sold in most supermarkets that are quite low carb – Sara Lee makes one that we buy regularly. For sweetener – you can use Splenda, or better still buy liquid sucralose, available everywhere including Walmart. For our son, because we do not like the idea of giving him too much Splenda, we buy powdered Erythritol, a “sugar alcohol” that has no effect on blood sugars and does not cause some of the side effects (diarrheah, stomach upset) that some of the other polyols cause. Erythritol is a natural product by the way.
You should also try to sign up for some of the low carb blogs that are out there on the net – there is a tremendous amount to learn about how to live low carb, but I can tell you that it is possible to do and it will improve your blood sugar control. As a matter of fact, when we started my son on a low carb diet i decided to join him – I lost ten pounds and feel great as a result.
I am so sorry to hear of your recent diagnosis. I am sure you are still in a state of shock – and there is so much to learn. But it will get easier, just as it has for our family. Nothing in my life caused me more pain than to receive the diagnosis about my son – I would gladly have traded places with him had I been given the choice.
One more pointer. There are excellent diabetes conferences out there where you have an opportunity to listen to experts in the field. I am thinking specificially about the conferences organized by “children with diabetes”. These conferences are equally valid for adults I believe, as I have attended three of them with my son already.
Your job now is to learn, learn , learn. And with that knowledge, I believe you will be able to manage your diabetes well and live happily.
Kev – I truly enjoy your posts. Best of luck.
Dave g
I am 25 years old and I’ve had type 1 diabetes since I was 13. It’s crazy to think that I’ve had it this long. It feels like it was just yesterday I witnessed my mom balling her eyes because of the guilt she felt upon realizing I was also a juvenile diabetic. I tried the pump and hated it. I felt like I didn’t have the time, patience, or money for it. My endocrinologist supported my decision to go back to injections. My a1c has never been over 7.3 but I need to do better. I exercise often – mainly skateboarding and bike riding – but I still eat what I want and attempt to balance it with more insulin. I smoke weed and drink occasionally (side note). I’m worried about the cells in my body developing an insulin resistance, similar to what happens in type 2 individuals. I appreciate your knowledge and your insight. I’ve never experienced a violent low, though both my girlfriend and I have witnessed how scary they can be with my mom. I teach environmental science, so I’m constanty worried about suffering a low blood sugar attack inside or outside of the classroom. I’ve always thought to myself that it’s better to be a little high then a little low, but I know in the back of my mind neither is healthy nor desirable. My hopes are to minimize the swings between kinda high and just right. I know the pump is supposed to help with this, but your solution is logical and simple (in theory). Eat less carbs, use less insulin. It’s not that I pig out on cake, but I need to be more mindful of the junk I’m putting in my body. I am not normal. Why should I assume and why should I pretend? Thanks again. I’m going to check out dr. Bernstein
Andrew, yes, Dr. Bernstein’s Law of Small Numbers (eat less carbs, use less injected insulin, and in turn avoid blood sugar swings) has done wonders for me. I have gone from high and low blood sugar spikes to a relatively straight line on my blood sugar graphs. Stabilizing your blood sugars will also help you to worry less in the classroom, etc. For me, the insulin pump has helped as well, but the general theory can be very effective whether you do shots or are on the pump. Best of luck.