JDRF and the American Diabetes Association announce new staging for Type 1 Diabetes

2 yrs old heh heh heh

Me at three. Pre, pre, pre-type 1 diabetes?

The news was announced today about a new classification approach for the development of type 1 diabetes (T1D). Three distinct stages will mark the development of the disease – from its earliest pre symptomatic stages to full blown onset. The aim of staging is to help preserve more insulin-producing beta cell function and make further strides toward prevention.

JDRF and the American Diabetes Association, with several leading diabetes research and clinical organizations, collaborated on the development of the staging approach. The American Association of Clinical Endocrinologists, the International Society for Pediatric and Adolescent Diabetes and The Leona M. and Harry B. Charitable Trust have already endorsed it.

“We know type 1 diabetes begins long before insulin dependence occurs, and the best time to halt the disease’s progress is before the loss of insulin-producing pancreatic beta cells,” said JDRF’s Chief Scientific Officer, Richard Insel, M.D. “Decades of research in at-risk individuals have provided the foundation for developing this new three-stage diagnostic approach, which we believe will help optimize the design of clinical trials to prevent symptomatic disease and more quickly evaluate interventions.”

Desmond Schatz, M.D., president-elect, medicine and science at American Diabetes Association explained, “Type 1 diabetes is diagnosed relatively late in the disease process.” Now pre-type 1 diabetes can be identified both in higher risk relatives and the lower risk general population by using a combination of genetic, immunologic and metabolic markers and categorization of the natural history of the early disease process which is now possible.” According to Schatz this will facilitate prevention studies at different stages of the disease process.

Personally, I always keep hearing as well that figuring out how to prevent type 1 diabetes may be necessary before we find a cure.

Regarding staging, two years ago I wrote on The Huffington Post that we should characterize type 2 diabetes in stages – “The Lie That’s Killing Us: Pre-Diabetes.” Diagnosing people with “pre-diabetes” doesn’t inspire the action that calling it stage 1 of type 2 diabetes likely would. Many of the current 80 million people with “pre-diabetes” will go on to get type 2 diabetes. Yet, if they heard that they had stage 1 type 2 diabetes they might well make the lifestyle changes – eating a healthier diet, losing weight, being active and possibly medication – that might prevent it. I’m still in favor of this.

For myself as a type 1, I remember how surprised I was years ago when endocrinologist Gerald Bernstein, who ran the Friedman Diabetes Center in Manhattan, told me that while I got type 1 diabetes at age eighteen, I probably began developing it when I was twelve. And I have a theory why that might be so.

We talk about type 1 diabetes coming on like a bullet train but apparently there’s a slow escalation and now researchers are able to see distinct metabolic markers of the disease’s progression. Marking the stages of the disease will help facilitate prevention studies, and hopefully one day, prevention – and a cure.

My favorite hotel food, a pancake

Screen Shot 2015-09-23 at 1.46.18 PMI’ve just read over a number of my recent blog posts and realize how heavy they’ve become on food. Without realizing, healthy eating and how to achieve that, have become consuming passions. Now you ask, “So how can pancakes be your favorite hotel food?”

Well, I am human after all. I travel a lot speaking at conferences, speaking as a peer-mentor with the A1c Champions program and having a Dutch husband. That means I’m often lodging in hotels. My favorite breakfast at a hotel is not the all-you-can-eat buffet. I know I’d eat more than I should and I’m not interested in most of what’s on offer – the breads, muffins, cold breakfast cereals…Nope, I want two freshly scrambled eggs and one pancake.

If I could I’d wave a magic wand and make it a buckwheat pancake, trust me I would. But hotels have not gotten this far on the healthy breakfast spectrum. So buttermilk fills the bill.

I order my meal as two sides: Two eggs and one pancake. And most of the time after the strange look from the server, he or she becomes very accommodating. And I’m very specific, “One pancake please, no sugar, no syrup, no butter, no fruit.” When it comes I remove the orange slice and parsley garnish, which always seems to be there, and sprinkle my pancake with a little salt. A bite of sweet, dense and chewy pancake with the warm egg is quite delicious. Really, try it. Then, if the gods are smiling, I have time to head to the hotel gym and bring down the outrageous blood sugar rise one pancake causes.

Surfing this morning on pancakes, this recipe looks great if you’re making them at home – no flour, but almond meal and flax seed. If I actually cooked pancakes at home, I’d be sure to try it. Somehow I just like to keep my pancake confined to hotels.

On The Huffington Post, “The Invisibility of Type 1 Diabetes”

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A few days ago I posted an article on The Huffington Post, “The Invisibility of Type 1 Diabetes.” In three days it’s been shared more than 6,000 times and “Liked” by more than 35,000 readers.

I don’t tell you this because my head (as seen above) is now too big to get through the door. No, but because it touches me immensely to have what i write resonate with others and help them feel less alone. Especially when the comments left let me into a window on their lives:

“This is just one of the best things I have read on Type 1 diabetes – my daughter was diagnosed 9 months ago at age 17. Thank you”

“Such a well written piece. In fact, the only thing I have read that so accurately describes what I, and I am sure many others, feel on a daily basis. I am 41 years old and have been a type 1 diabetic for 31 years. People often comment on how easy I make it look but don’t know what I have to do everyday. It could be worse but still holding my breath for that cure!”

“Thank you for telling your story.. It echoes my daughters… She is 9… It’s nice to not feel alone in the daily fight”

If you missed it, this other post I wrote two years ago, of which I wouldn’t change a single word today, is still for me the ultimate experience of living with Type 1 diabetes.

Thank you all for reading and reaching out.

Two scales for healthy nutritious eating

DSS Glycemic Index Pyramid

Above graphic from a talk by nephrologist Jason Fung.

Below from a Nutrient Density study by Ph. D. Mat Lalonde presented in 2012.


You may have noticed recently I’ve been caught up in food. Perhaps a more scientific way of saying it, researching nutrition and nutritious and healthful eating. Partly for my diabetes, partly just for my health and longevity.

It goes without saying there’s a lot of contradictory advice about healthy eating, whether you have diabetes or not. There are a lot of experts who disagree about almost everything like the low fat/high carb or high fat/low carb debate, whether paleo is really healthy or a prehistoric gimmick, fasting and whether a calorie is a calorie.

I believe it makes sense to educate yourself. Read varying points of view, then try things out on yourself and see what works for you. Just as we say in diabetes, “Your diabetes may vary” a different way of eating may work better for you than me.

That said, the Glycemic Index Pyramid above, which comes from one of Dr. Jason Fung’s obesity lectures, tends to guide my eating. Although I don’t eat much dairy. Below it I posted the conclusion from a study by Mat Lalonde, Ph.D. Lalonde created a nutrient density scale which I find interesting. If you want to see his research, he explains it in this video.

Does everyone have type 2 diabetes wrong?

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I started watching some videos from Dr. Jason Fung. You can find many on YouTube. He’s a nephrologist (kidney specialist) who believes insulin causes type 2 diabetes. Yes, I said insulin causes type 2 diabetes.

Basically, his premise is type 2 diabetes is a condition of insulin-resistance. High blood sugars are the symptom not the cause, yet we seem to have singularly focused on treating the high blood sugars. We should be treating the insulin resistance instead.

By giving type 2s more and more insulin to bring down their blood sugar, they have more insulin circulating in their bodies – too much. This, he says, results in insulin toxicity. And while high glucose isn’t good, Fung says insulin toxicity is what causes heart disease, cancer and high blood pressure. He also says excess insulin causes artherioslerosis causing plaque to form in the arteries to the heart (2 out of 3 people with diabetes die of heart disease). And, excess insulin causes the body to retain salt and water. Too much salt leads to high blood pressure which most people with type 2 suffer from.

So Fung’s thinking is while treating type 2s with insulin brings down their blood sugar, it  worsens their diabetes and results in metabolic syndrome – high blood sugars, high triglycerides, high blood pressure and excess body fat.

Dr. Fung’s treatment protocol includes low carb eating and intermittent fasting. This keeps insulin needs low and releases the stores of sugar and fat in the liver caused by the insulin resistance. This by the way is known as fatty liver which most people with type 2 diabetes also have.

As a treatment protocol Fung also favors some diabetes drugs, but only those that don’t raise insulin. And gastric bypass if necessary. But he says fasting accomplishes what gastric bypass does naturally. I can only imagine how much the pharma companies like him. If this interests you at all, watch some of his videos. It’s difficult to capture this complexity in a few paragraphs. I also just watched his six part series on YouTube on obesity. This stuff just fascinates me.

I should say I discussed Fung’s ideas with a few certified diabetes educators and while they didn’t dismiss what he said, and in fact agreed we should be looking at bringing down the insulin resistance, they did feel high blood sugars caused glucose toxicity and insulin was the only remedy for this.

While Fung’s work is on type 2 and not type 1, he does advise low carb eating for us type 1-ers too to keep us from getting insulin resistance. Type 1s can also become insulin resistant like type 2s. That’s referred to as double diabetes.

Dr. Fung also led me to this website on optimizing nutrition to manage insulin. It’s written by a young man, Marty Kendall, who is predisposed to type 2 due to family genetics and has a wife with type 1. Kendall became interested in how to eat for insulin dosing. He’s very much an advocate of low carb/high fat and his recommendations are very close to paleo and ketogenesis with some twists. Definitely worth checking out.

The new book, “Thriving with Diabetes” provides strategies for self-management and life

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First, I have to congratulate my friend, David Edelman, who now has a book to add to his list of diabetes-advocate credits. The book is Thriving with Diabetes, which he wrote with MD Paul Rosman. It offers new strategies to better manage your blood sugar.

David’s other credits include founder of DiabetesDaily.com, one of the largest diabetes social media communities/magazine, advising Dario, the glucose meter and technologies company, and being great company in Dubai. David is on the left.

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Thriving with Diabetes is a refreshing combination of science –  how our body works and how it affects blood sugar – and counsel from a doctor, as well as illustrative patient stories and Edelman’s wealth of diabetes information and level-headedness. You will better understand what influences your blood sugars and discover ways to modify your behavior to improve them.

While there’s not new information here about diabetes itself, the book offers strategies and a mindset for self-management that are new. With them, you will have the capability to more easily and regularly keep your blood sugar where you want it to be. One such strategy is, “Use your best to fix the rest” – look at what’s working, what you’re doing well, and what bumped you off the track. Then adjust, in small steps, what caused the bump.

The writing is clear, easy to read and conversational and unlike most diabetes books, the last third of the book is about thriving with diabetes and living a better quality of life. You’ll learn how to build more positive habits, work more productively with your health team, recognize if/when you need emotional help and what to do and you’ll find my own two page contribution on how to flourish with diabetes.

For a taste –

“In chronic illness we talk about ‘coping,’” says Greenberg. “Yet coping depicts struggle, not doing well. Coping, as a strategy for living with diabetes, focuses on what’s not working and then tries to fix those things.

Conversely, a flourishing approach shifts your attention to what is already working and highlights your strengths. In addition, your focus is on what you want, a healthy, happy life, not on what you don’t want, complications.

You move from seeing perceived loss to what might be gained. You don’t beat yourself up for mistakes, but appreciate your efforts.” This is the emotional health equivalent of Use Your Best to Fix the Rest! Accept your successes and work on expanding them…

I love that Rosman and Edelman admit and acknowledge the complexity of managing diabetes and blood sugar, thank you very much. Kudos David and Dr. Rosman and thanks for bringing some new ways to help people manage their diabetes and live healthier, happier lives.

How to lose weight – Don’t Diet!

Don't Diet

It’s the first “Food Do” in my Diabetes Do’s & How-To’s book – “Say bye bye to diets!” They don’t work. You end up after a few weeks or months of restraint eating everything you used to plus more! Plus, dieting slows down your metabolism so you will forever more need less calories to maintain the same weight. You know the result – you gain weight after a diet. It’s sort of like, “What’s the best way to gain weight? Go on a diet.

Charlotte Markey, PhD agrees. Markey is a health psychology professor at Rutgers University and author of Smart People Don’t Diet. I haven’t read her book but I did read her article “Don’t Diet!” in Scientific American’s Sept/Oct issue. You can find it if you have access. If not, this article of hers, “6 Reasons Smart People Don’t Diet” more or less sums it up.

Diets make you feel deprived. You can’t stay on them for long. The more you restrict food the more you think about it. The more you think about it the more you crave it and physiologically will give in to your cravings. Counting calories is hard, humiliating and leads to burnout. Dieting fatigue leads to difficulty learning, working and exerting self-control. Blah, blah, blah, c’mon you know this. You’re smart. Yet we are all tempted by the quick fix. There is none, period.

Just like I say in my book – and give you steps how to lose weight without dieting – here are a few tips from Ms. Markey: Find a few healthy meals you like and make them frequently. Take small steps and know it will take time to reshape your body. Aim for health and nutrition not weight loss and the pounds will naturally come off. Don’t lose heart.

My own mother, 85 years old, told me last week she’s going on the 5 days you eat and 2 days you don’t diet. I said, “Mom, you know what’s going to happen. You’ll lose a few pounds, go off the diet and put them back on. What’s the point?” She said, “I know, but I want to do something about this extra ten pounds.”

She knows what it takes to lose weight for good, but like the 75% of Americans perpetually on a diet, she wants a quick fix. Geez, will mother’s never learn?

My Trial: The Dexcom G4 CGM vs Freestyle Libre FGM

This is how easy the Freestyle Libre Flash Glucose Monitor from Abbott is to insert. 

Recently I conducted a device trial comparing my Dexcom G4 continuous glucose meter to a new flash glucose meter called the Freestsyle Libre from Abbott (currently only available in Europe and the UK). They call it “flash” because you don’t see where your blood sugar is until you scan the sensor with what’s called a reader, but for my trial, it didn’t matter.

The Freestyle Libre is very popular – it was out of stock for 3 months after its release. Here is where having a Dutch sister in law who lives in the Netherlands comes in especially handy. But I should tell you the trial made me wonder: how do we know how much we can trust our devices?

I wore both the Dexcom and Freestyle for a week. Dexcom’s sensors are approved for 7 day wear. The Freestyle Libre’s for 14 days. Here at a glance are the dominant feature differences between the two.

Features Dexcom G4 CGM Freestyle Libre FGM
Sensor approved for wear 7 days 14 days
Calibration 2 x day None
Alarms Yes No
Range 20 Feet Not appropriate
Insertion Cumbersome Easy
Body location Stomach Back of upper arm
Sensor size Somewhat bulky Thin

The Freestyle Libre pretty consistently gave me blood sugar numbers 20-30 points lower than my Dexcom. It was unnerving. I emailed a friend in Sweden who has also used both and he reported similar results with a comment, “The worst part is how do you know which to trust?”

Make no mistake, I would love Freestyle’s 14 days of not having to prick your fingers since the Freestyle Libre requires no calibration. But without calibration is it really reading where I am correctly?


My Dexcom is on the left. The Freestyle reader in the middle. Since it has the European system of mmol/l, 6.6 mmol/l as you see on the screen, is equivalent to 119 mg/dl. My meter is on the right. At 119 the Freestyle is way below my meter and Dexcom.

Over the years I’ve learned the numbers on your meter are not precise. They’re an approximate of where your blood sugar is. If you check your blood sugar two times in a row you’ll usually get two different numbers. Sometimes they’re close, sometimes not.

I also know continuous glucose monitors are measuring glucose from interstitial fluid, not blood. As such, their numbers lag about ten minutes behind your blood sugar meter reading and sometimes when your blood sugar is going up or down quickly they get a little confused.

All that said, it’s disconcerting when two devices are giving such a different reading. Abbott hopes to make the Freestyle Libre available in the US next year. And I’d love to use a glucose monitor that’s as comfortable and finger stick free as Abbott’s. I just want to know can I trust it?

Just as we keep fighting for greater meter accuracy, a twenty five point spread between two glucose monitoring devices is just too much.

For more on this and the emotional cost of devices, see my Huffington Post article here.

Doing goes further than telling when it comes to diabetes

Screen Shot 2015-08-04 at 3.02.57 PMIt’s a funny thing. Diabetes is an everyday condition the person with it must manage. What most of us with diabetes need to do, and what our doctors would love us to do, often requires changing our behaviors: to eat healthier, become more active or exercise, check our blood sugar more often.

Yet this is all “told” to us by our health care providers. Think how much easier it would be if what you were told to do you were actually shown to do. Perhaps a dietitian would take you food shopping and show you how to read labels. Perhaps there’d be a kitchen at your clinic and at your next appointment you’d cook a healthy meal with nutritionist.

A small article in this month’s Diabetic Living magazine caught my eye, “Walk with a Doc.” Walk with a Doc is a walking program that was inspired by a cardiologist, Dr. David Sabgir, who was frustrated he couldn’t get his patients to exercise.

He began telling his patients, “If my family and I are at the park Sunday would you come walk with us?. He collected names of his patients who were interested and the rest as they say is history. Today Walk with a Doc has more than 160 participating sites in more than 35 states.

For a condition that relies so heavily on asking people to change their behavior, “acting into the change,” doing with people works a whole lot better.

Finally bit the strength training bullet

Exercise -  - 7

When I saw my endo a few months ago she said looking at my lab work, “If you fell on your wrist you’d likely break it.” A not so subtle way to say my bone density stinks in my upper body. Sure, I walk like a demon which helps my lower half, but I still have osteopenia, the beginning of osteoporosis. “I can start you on a medicine you’d take for five years,” my endo said still talking. (Was she really still talking? All I could think of was I was going to break all my bones if I fell down.)

“I don’t want to be on another medicine (that would mean two insulins, levothyroxine for my hypothyroidism, calcium and Vitamin D and a bone density med). Then she asked, “Have you ever worked with a trainer?” The answer is no but the thought got planted in my head.

I’ve long known I should be doing some kind of resistance training. Maybe now, I thought, I have to bite the bullet. I could walk a dozen miles on any day just for the fun of it, but squats, c’mon, does anyone like doing that?!

Yet, luckily for me at this same time I was watching a series of videos on functional fitness. That’s a type of fitness training that will keep you strong and agile as you age. You’ll be able to pick up a pencil or a thirty pound box without gasping and throwing out your back. Better yet you’ll be able to climb the subway stairs and make it back to your apartment. But you won’t get a buff body. That sounded just about perfect for me as I’m about to turn 62 and have no desire to have my body buffed.

So now Andrew, my intrepid trainer, and I have turned my apartment into a gym. Andrew is just what I wanted: thoroughly professional, expert in functional fitness, gentle yet firm and he watches me like a hawk to see what my body is doing, which is usually something different than what he just showed me to do. I’ve learned faster isn’t better and resting even between reps is a good thing.

I can’t say I love strength training, but I can say it does’t repel me as it used to. I’ve only been doing this shy of two months, but I do think I’m standing a little straighter and steadier, more solid in my core (yes, I’m picking up the lingo) and stronger overall. Our sessions are an hour twice a week and then I do a one hour session in between on my own.

I expected my blood sugar would either shoot up – as it does if you’re really working hard anerobically, or down, as when you do aerobics. But I can’t yet confirm what it does. I will continue to watch. But I do feel I’m on the way to being more resilient physically, more flexible, better balanced, stronger and more centered. And, the next time I’m about to take a spill which I hear old people do a lot, I’ll have a greater chance to sidestep it.

There’s also of course another benefit. When my husband and I sell this 700 square foot 1 bedroom apartment, we can advertise it as living space, two offices and a gym!