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Semisweet Turns 1

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A little over a week ago, I sat in the audience of a lecture, “Prevention and Treatment: From Probiotics to Immunotherapy,” given by the current president of the American Diabetes Association (ADA), Desmond Schatz, MD at the Friends for Life conference in Orlando, FL.

The talk was a speedy assessment of what is known about type 1 diabetes today, and to anyone who follows the current research, it’s no surprise that what we know is actually how much we don’t know. A few minutes into the talk, Dr. Schatz kept repeating the phrase, “a need for urgency,” as in, “There is a need for urgency for research participation” and, “There is a need for urgency for funding models to change.” Dr. Schatz then acknowledged that everyone in the room understood the need for urgency because we either had diabetes or loved someone who had diabetes.

He then gave some statistics in the talk.

In Finland, a country with one of the highest instances of T1D, 1 in 123 people has type 1.

In the United States, about 1 in 300 people has type 1.

Worldwide, new cases of type 1 diabetes double every 20 years. That’s a new urgency: an autoimmune disease with no known trigger and no known cure doubles in occurrence in a little less than a generation.

When our son was diagnosed with type 1 diabetes, with no family history, the urgency was new to us. After a while, we looked up from our life that now included carb counting, medical devices, glucagon kits, needles, pokes, and insulin, to see that the urgency is spreading like a slow avalanche.

As Semisweet closes its first year in the DOC, and opens its second, the new urgency is why we share our stories. The numbers of T1D are only growing, but now, T1D is no longer a number for us, it’s a story, it’s part of our life. Stories are advocacy.

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Friends for Life Banquet 2016

The CDC is Getting Diabetes Wrong

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A recent article from diaTribe, “New Study Suggests Childhood Type 1 Diabetes and Kidney Disease are On the Rise,” should have T1D families and non T1D families alike on the look out. Basically, the article cites a research study published in Diabetes Care that uses data from insurance companies to draw the conclusion that in 11 years the instance of type of 1 diabetes has almost doubled in children.

Here’s the poignant quote from diaTribe’s article, “According to a new study in Diabetes Care, more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults” (diaTribe). 

It’s alarming for any disease to double its rate of incidence in 11 years, but what’s truly alarming is that one of the US’s major operating components of the Department of Health and Human Services, the CDC, gets diabetes wrong. In a major 34 year longitudinal study released in 2014, the CDC makes no distinction between type 1 and type 2 diabetes. Type 1 diabetes is an autoimmune disease, caused by the body attacking its own beta cells and stopping insulin production. Type 2 diabetes is when the body overproduces insulin, but insulin cannot enter the body’s cells, and this process is likely a product of lifestyle and genetics.

Since the CDC makes no distinction between type 1 and type 2 (again two separate and different diseases), it’s able to make the claim that diabetes is on the decline because 2009 saw a trending decrease in the incidence of type 2 diabetes. Here’s a link to the CDC’s study.

CDC 2014 diabetes graph

graph from CDC’s study, “Annual Number (in Thousands) of New Cases of Diagnosed Diabetes Among Adults Aged 18-79 Years, United States, 1980-2014 source: CDC

This study has angered families affected by type 1 because the CDC illustrates a willful lack of understanding in two separate diseases. Additionally, and this is the point I find most frustrating, the CDC has no disease registry of type 1 diabetes.

Remember the reporting of the Ebola crisis that started in March 2014? The number of cases in specific countries was reported daily on multiple news outlets because Ebola was a reportable disease that had a disease registry. Here’s the CDC’s (in partnership with the World Health Organization) current cases. As of this writing, the cases were updated on January 6, 2016, yesterday.

I’m not comparing Ebola and type 1 diabetes; however, if the CDC has the ability to track a disease in distant third world countries and provide up to date current information to the public, certainly the CDC should be able to track the cases of type 1 diabetes within its own country.

Why are insurance companies the ones tracking type 1 diabetes in childhood? Is there a clear picture about type 1 diabetes in the uninsured population? If the CDC were tracking type 1 diabetes AND separating it from type 2, what would the graph for type 1 look like? Between 2002 and 2013 the blue lines would almost double in height. That’s certainly an increasing epidemic worth tracking, especially if type 1 diabetes has an environmental trigger.

Type 1 diabetes was once a rare childhood disease, but it’s increasingly less rare. With the incidence of type 1 diabetes increasing across the globe, but without numbers to study, a cause and cure will remain elusive.

The type 1 community is reacting and calling for change. Here are some actions you can take.

Living with type 1 diabetes presents enough hardships and frustrations, so the government organization whose mission includes,”increas[ing] the health security of our nation” should not be another frustration.

99 Diabetes Problems and Breakfast Is One Of Them

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Having type 1 diabetes means following a pattern of exact measurements and calculations, all the while knowing that a pattern or desired result could likely not be the outcome. One day, Henry can run around like a madman at the playground and then come home to compete is some serious sofa jumping, and sometimes this physical activity will cause him to have a low blood sugar, but other times his blood sugar can go up.

However, there is a constant calculation in type 1, a perfect diabetes storm: food, stress, and biology, otherwise known as breakfast.

Food

Common breakfast foods such as sugary cereals, pancakes, waffles, and bagels are refined carbs that jack up blood sugars. The quickest way to see two arrows up (which indicates a rapidly rising blood glucose) on a CGM is to eat these common, simple carb-rich breakfasts foods.

Stress

I’m always confused by those scenes on T.V. shows and movies where families sit down in work clothes to pitchers of orange juice, bacon, and omelets before work and school. Really? Does this really happen? Really? A montage of a morning scenes at my house involves waking up two young kids, brushing hair and eating at the same time, putting at least one article of clothing on backwards, forgetting something, the kids playing a last minute game of school with stuffed animals just minutes before they go to their actual school. And diabetes care.

Biology

Breakfast is literally breaking a fast. When we go a long time without food, our body makes its own energy through glucoseneogensis, which is exactly what the word sounds like: the creation of new glucose, which is done from glycogen stores in the liver. In someone without T1D the beta cells of the pancreas send a message to the alpha cells of the pancreas to start the process of glucoseneogensis, which prevents our blood sugar from dropping too low, or around 70, in long time periods without food, like overnight or interminable work meetings.

In someone with T1D, the beta cells are non-functioning and therefore can’t communicate with the alpha cells. So the result of this is sporadic and unreliable glucoseneogensis. If endogenous (originating inside the body) glucose is being circulated, it takes exogenous (coming from outside the body) insulin to bring a blood glucose back in range. People with T1D are taught to account for exogenous glucose (glucose coming from food), but endogenous glucose is a crapshoot.

I don’t have type 1, and I’ve worn my son’s continuos glucose monitor on occasion. In the picture below, you can see a CGM on the top, which is my son’s. He woke up with a high blood glucose just below 200, and experienced a quick rise from the carbs he ate for breakfast. I woke with a blood sugar around 80, and it rose after I got up, cooked, and got the kids ready. The arrow points to where my blood sugar rose because of glucoseneogensis, but my endogenous insulin production quickly brought my level back down. The rising line on my son’s CGM shows just how difficult it is to get biology and math to line up.

morning glucose

Top CGM: T1D with high waking BG post breakfast with insulin and carbs, Bottom CGM: non T1D with waking BG around 80 and glucoseneogensis

Here’s one of the great challenges of diabetes care: a person caring for type 1 diabetes has to make decisions that simultaneously require anticipation and reaction. Every morning, we have to react to the waking glucose value and anticipate the food, activity, emotion, and invisible metabolic processes that Henry will encounter during his day.

It’s taken a while, but here’s how we’re navigating the perfect storm of diabetes and breakfast.

Food

Now that we’re paying attention to food, it’s really obvious that everyone should not eat some things. On occasion, I’ve worn my son’s CGM, and I can watch my non T1D blood sugar rise after eating a few crackers or a bit of bread. When I eat a salad or lean protein, there’s no rise in the line that indicates my blood sugar. It’s an easy conclusion: some foods, usually shelf-stable refined carbs, should not regularly be eaten.

For breakfast we try to balance our son’s plate with a fat, a protein, and carb. A typical breakfast for him might be something like an egg sandwich (check out this low carb bread) with cheese and an apple, or a wholegrain waffle with sugar-free syrup, sausage, and an egg.

Stress

I got nothing here. Diabetes makes everything harder. In related news,  (see above) we’ve opened a casual breakfast diner at our place.

Biology

Diabetes brings consistent inconsistencies. This morning Henry’s waking blood sugar was 94. Yesterday, it was 186. His blood sugar will be inconsistent, but we can consistently pre-bolus. Lately, while our son is still waking up, often in bed, or as part of getting dressed, we pre-bolus his insulin for breakfast. As his body goes through the metabolic process of waking up, and we complete the morning tasks of getting ready, this is a great time to pre-bolus and let the insulin’s onset of action time line up better with the carbs he’ll be eating in about 15-20 minutes.

With all this science, research, and effort, here’s yesterday’s two-hour post breakfast data.

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Looks like we’ll be pre-bolusing and serving up eggs over easy at Casa Del Semisweet from now on.

 

Announcing our first GIVE AWAY!

You’re invited to comment and with a recipe, link, or breakfast idea that’s blood sugar friendly. I’ll leave a few ideas and links in the comments to some breakfast foods we’ve been trying. If you post your comment by December 31st, a winner, at random, will be selected to receive a bar of handmade Semisweet Soap. I’ll contact the winner for shipping information, and we only ship within the U.S.

Hello, We’ll Talk About Diabetes

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In 1919, eleven-year-old Elizabeth Hughes, daughter of Charles Evans Hughes,
Justice of the Supreme Court, was diagnosed with type 1 diabetes, a death sentence. At the time of her diagnosis, children with T1D survived an average of 11 months after diagnosis. The only “treatment” was the Allen diet, a slow starvation—  eating about 400 calories a day from foods like “thrice boiled cabbage” (Total Dietary Regulation in the Treatment of Diabetes).

L: a child with diabetes on the starvation diet, R: same child after treatment with insulin (photo credit: trumanlibrary.org)

left: a child with diabetes on the starvation diet right: same child after treatment with insulin (photo credit: trumanlibrary.org)

Fortunately, Elizabeth was among the first American patients to receive insulin in 1922. She grew up, married, had three children, and died at age 73. When her children were young, she never told them she had diabetes, not even after her oldest son witnessed her convulsions from a severe episode of hypoglycemia. In fact, it wasn’t until her children were grown that she took each child aside and told them privately that she had diabetes.

Her secrecy made sense. She’d been handed a death sentence at eleven. Even after the discovery of insulin, prognosis wasn’t good. Recently, The New York Times ran an opinion piece, “The End Isn’t Near,” by Dan Fleshler, someone who has been living with diabetes for 53 years. Fleshler was diagnosed at seven, and his doctors weren’t optimistic about his longevity, but he’s healthy and here, yet the looming predictions cut into the quality of his life.

A diagnosis of a disease or a condition creates a stigma, and there’s a deep drive to keep any stigma a secret. However, secrets around disease create misunderstanding, shame, and fear. If people with diabetes and their family members don’t talk about what it’s really like to live with diabetes, then it’s easy for misconceptions such as: “insulin is a cure” or diabetes is “easy” as long as the patient doesn’t eat sugar, to circulate.

It wasn’t until my mid-twenties that I met who someone who was open about T1D. Amy regularly checked her blood sugar and bloused for food without any fanfare and answered all our questions, but I had no idea what it meant to have diabetes. In fact, we were hosting a party, and I made tea sweetened with honey just for Amy, because I knew honey was lower on the glycemic index. I’d thought to measure the honey and let her know how much I used, but I had no idea why it would have been better for Amy to drink something with an artificial sweetener in it, which she did.

A few years later, our son was diagnosed with type 1 diabetes, and I knew we would educate ourselves to help Henry live his life in the best ways we could. However, I thought we’d hunker down and live life with diabetes with relative quietness. And we did for a while, but we started noticing things, like when Henry hears the case of his blood glucose meter being unzipped, he holds out his finger without looking up from his Legos or iPad. We started reading information such as, Type 1 diabetes is increasing by 3% annually and affecting a younger and younger population, with some diagnoses occurring before a first birthday. There’s no disease registry, so T1D can’t be studied in a truly systematic way. Some insurance companies deny coverage for life saving and extending equipment, such as pumps and CGMs, for infants and children. Some schools don’t allow students with T1D to use smart devices, such as an iPod, iPhone, or iPad to help manage blood sugars.

It took me about a year to move from being a parent of a person with diabetes to an advocate for diabetes awareness and research. In fact, I think many parents of children with disabilities, diagnoses, and conditions, to their surprise, define themselves as  an advocate after the emergency settles into the daily.

So, for now, we’re speaking up, telling Henry’s story with the simple belief that story and science should work more closely together. This summer insulin turned 93 and Henry turned 5 in September. If we talk about diabetes enough, maybe one day we can talk about it less.

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No Added Corn Sugar

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I’ve always read nutrition facts, but now I analyze nutrition facts because I have to depend on the the carbohydrates to determine how much of a life sustaining (or ending) drug, insulin, to give my kid. The first trip to the grocery store after our three-year-old son was diagnosed with type 1 diabetes was shocking. Our local grocery store has a nutritionist, and shortly after explaining why I was looking for certain products he said, “A grocery store’s a bad place to be if you’re diabetic.” He wasn’t saying anything I hadn’t already felt, but where else do you get food in March in the midwest?

I was at the grocery store for three hours, reading the nutrition labels for every food we typically eat. Freezing, I stood at the dairy case shaking my head at the yogurts, not because Henry couldn’t eat yogurt (he can), but because of all the added sugar in most every food we eat.

We’ve always been a family that cooks from whole ingredients, belongs to a CSA, and frequents farmer’s markets. However, we still have snack foods and sweets in our house. We’re pretty moderate— a little bit of most things, but having type 1 diabetes at our table has made our intentional choices even more intentional.

Reading nutrition labels and portioning food is a good reminder of just what and how much we should be eating.

I came across Eve O. Schaub’s memoir, Year of No Sugar. For one year, Schaub and her family of four ate only food with no added sugar. As they embarked on this year, the family had to discuss what the ground rules were and what defines no “added sugar.” Schaub was inspired to start the project after watching the amazing lecture, “Sugar: The Bitter Truth,”  by Dr. Robert Lustig, a Professor of Pediatrics, Division of Endocrinology at UCSF.

In case you don’t watch the 90 minute lecture, here’s the take away. Since the 1950s Americans are about 20 pounds heavier. We eat more sugar and carbs than we use to, and here’s the science part (45:00 into the video): fructose is metabolized in our liver in a way that’s similar to alcohol. Dr. Lusting says chronic fructose exposure results in metabolic syndrome:  obesity, lipid imbalance, and type 2 diabetes.

I know type 1 diabetes and type 2 diabetes are two separate diseases, with two separate etiologies. Type 1 is an autoimmune disease and type 2 is a disease associated with the interaction of genes and lifestyle. Since our son lives with type 1, we’ve become more aware of just how much sugar is in everything we eat. Constantly reading nutrition labels is a reminder of just what we should and shouldn’t be eating. Focusing on carbs and sugars has also shown us that  sugar is ubiquitous, so maybe it’s time to change the conversation around type 2 diabetes from one of shame and blame to one of regulation and education when it comes to the food supply in America.

Newly Diagnosed Reading List

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Speaking to an audience of First Timers at Friends for Life 2015 Diabetes Dad, Tom Karlya, said “Diabetes is an unfair and tough disease, but knowledge is the equalizer in diabetes.” Knowledge is the equalizer in diabetes. Between blood glucose checks every two hours, being a parent, and teaching, it took me a few months to get through these books, but the history, research, and practical advice helped me cope with our son’s diagnosis and more importantly, find good avenues of care for him.

Diabetes Rising by Dan Hurley

After I meet with another parent whose child has diabetes, one of the first pieces of advice she gave me was to order Diabetes Rising. This book is an advanced primer on the history and current research as it pertains to T1D. Divided into three main sections, the first section chronicles the history of diabetes mellitus and focuses on the alarming rate at which both type 1 and type 2 is rising. The middle section covers hypotheses about the etiology of type 1 and the last section covers various treatments and research for a cure. The author, Dan Hurley, is a reporter, and a person living with T1D. This is the book I pass along to family and friends who want to learn more about diabetes.

Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Thea Cooper and Arthur Ainsberg

The book swiftly moves through the history of diabetes and its lack of treatment before the modern era. I think this book is one part biography of William Banting and one part case study of Elizabeth Hughes, one of the first American patients to be given insulin after its discovery in 1921. The book covers the early experiments of Banting and Best and follows the story of insulin to the Lilly Corporation and then the Noble Prize.

Cheating Destiny: Living With America’s Biggest Epidemic by James S. Hirsch

Like Diabetes Rising, this book looks at the history of diabetes, hypotheses, and current (published in 2009) research. What makes this book differently is the deeply empathetic voice of the author, James S. Hirsch, who is a person living with T1D. The book opens with the author’s three-year-old son’s diagnosis of T1D.

Think Like a Pancreas by Gary Scheiner

Thankfully, the author, Gary Scheiner, a CDE and person living with T1D, acknowledges no one can really think like a pancreas. However, if it’s possible to even replicate one iota of what a pancreas does, it would be with the help of this book. This book covers how to establish and test basal programs, a wealth of information for counting carbs and covering with boluses, detailed nutrition information, and other elements that affect blood sugars. Sitting down with this book is like sitting down with a nutritionist and CDE for a very advanced lesson on artificial metabolism.

What I Did or Didn’t Do Wrong

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Five weeks after our son’s diagnosis of T1D, we were back in the Pediatric Specialty Unit at our first follow up visit with the endocrinologist. She closed the appointment by saying, “You guys are doing great. We don’t know what causes Type 1 Diabetes. It just happens that the right two people with certain genes found each other and fell in love.”

Type 1 Diabetes is an autoimmune disease, and after hearing that, it felt like we’d given our kid some bum genes. Like certain cancers, one of the latest theories on the etiology of Type 1 Diabetes is related to the gene-environment interaction, which is commonly described with this analogy: genes load the gun and environment pulls the trigger. If we’d loaded the gun, I wanted to find out if it was likely that we’d also pulled the trigger.

Family Portrait by Henry

Family Portrait by Henry

I spent a lot of time reading medical articles describing the hazy understanding of the etiology of Type 1. There are certain risk factors that make the disease more likely, but besides recently moving to a cold climate, Henry had none of these risk factors. In the general population, with no history of Type 1 in the family, the chance of developing Type 1 is 0.4%. On both sides of our family, Henry is the first person to have Type 1. We have the usual history of autoimmune diseases that are common in the developed world, like rheumatoid arthritis and Hashimoto’s, but no T1D until now. 0.4%

In my research, I did discover that Type 1 is increasing about 3% annually, which in the world of disease, is a quickly climbing rate. If I’m being honest with myself, I knew I wouldn’t find any answers in all the research, not even much peace.

There’s nothing any parent of a child with T1D does or doesn’t do. There are certain populations and places where Type 1 Diabetes is more likely, but until there is a disease registry, we won’t know the true occurrence of T1D. I still find it fascinating to read case studies and medical articles, like “Pathogenesis of type 1 Diabetes” by Massimo Pietropaolo, MD (subscription required to read full article), but sometimes a good meme nails it.