It's Complicated: Eating with Diabetes--When Your Stomach is Broken

 Last night I came across a Tweet from Ginger Vierira (@GingerVieira) that caught my eye. I thought about it for a few minutes before responding (always a smart thing on Twitter). 

How has type 1 diabetes affected your relationship with food? I'd like to included your answers in an article I'm working on! Feel free to reply to this tweet or send me a DM if you'd like to contribute. <3 Thank you! #t1d #type1diabetes

It's a complicated issue. In a nutshell, with Type 1 Diabetes (T1D) we have to calculate how many carbohydrates we eat and administer an appropriate dose of insulin. Okay, it's a lot more complex--meauring blood glucose (BG), adjusting the insulin dose to get to a target, etc. If you've done it, you know.

But her question is complex, too. Insulin is expensive as hell and more than a few people follow a diet low in carbohydrates that requires a lower dose of insulin. If you can't afford it, the obvious solution is to use as little as possible. Tragically, so-called "insulin rationing" can be deadly. Too many people are forced to do that and it'll definitely affect your relationship with food.

It's long been proven that keeping blood glucose as close to normal as possible leads to fewer diabetes complications. The Diabetes Control and Complications Trial, or DCCT, was so conclusive that it was ended early so that the information could be shared promptly. Consequently there is a school of thought that the healthiest strategy is to best manage T1D a "low carbohydrate" diet is the way to go. Dr. Richard K. Bernstein is the acknowledged pioneer if this approach and it's most vocal advocate. Details, pros and cons can be found here. Again, like insulin rationing, if you want (or feel the need) to follow this approach, it'll also inform your relationship to food.

There is another way of thinking about carbs and diabetes: if you know how many carbs are in a meal, and how your body utilizes insulin, then you can eat like a person without diabetes--within reason. I'll put an emphasis on "WITHIN REASON." A Big Mac, large fries, large strawberry shake and an apple pie has 283 grams of carbohydrate--103% of the recommended daily allowance (their number, not mine). Whether you have T1D or not, that'll give your pancreas some serious pain.

But what if your stomach doesn't work right? To review 8th grade anatomy, after you swallow food it enters the stomach. Acidic digestive juices are secreted and along with the stomach contracting to mix it up, after a while it empties from the stomach and enters the small intestine. If there is a problem with how the stomach contracts, or passes it to the small intestine, you might have gastroparesis. "Paralyzed stomach" is a loose translation, and this complication affects 1 in 3 people with T1D. I've been wrestling with it for over a decade and I can tell you it makes living with T1D a monumental challenge. Here's why:

When we inject (or pump) insulin at mealtime, we are counting on the predictable rate of action of insulin. We are also counting on the speed that the carbohydrates start getting converted to glucose. Done right, blood glucose will rise (it does that in people without T1D) but not too much. But with gastroparesis, the food is held in the stomach for too long, or it empties too slowly. Consequently the insulin starts working but if there isn't any of that food to work on your BG will dive. That's bad and can result in hypoglycemia, or low BG. Normally you treat the low BG with carbs, but now you have just added more carbs on top of the carbs from the meal. Guess what: your BG is going to spike, likely resulting in hyperglycemia. The solution to that is more insulin. Welcome to the Gastroparessis Hamster Wheel.

There are dietary recommendations on how to eat with gastroparesis. The University of Virginia's guide is well respected, as are tips from the International Federation For Functional Gastrointestinal Disorders or IFFGD. Both are useful and naturally before starting this, or any diet or treatment for T1D always talk to your doctor or a Diabetes Care and Education Specialist.

So how do you manage T1D with gastroparesis, and how does that inform our relationship with food? I'll describe my experiences in future posts. In the meantime, be well and stay safe!

Continuing Education For Patients

 "I don't know what I don't know." That thought crosses my mind a lot, whether it is using my computer, figuring out whether to take a class, or in managing my Type 1 Diabetes (T1D). Fortunately in the case of people with diabetes (PWD) we have a great resource ready, willing and able to help. Those professionals are your friendly, neighborhood Diabetes Care and Education Specialist. 

Let's face it: the newly diagnosed PWD gets hit with a ton of information and lifestyle changes beginning the minute they are told "you have diabetes." When it happened to me in 1994, I had to learn about mixing Regular and NPH insulin, reading a blood glucose test strip by holding it next to the strip container and comparing the colors, as well as learning all about meal exchanges. Thank God times have changed. What hasn't changed is that I was lucky to have a trained pro (called a Certified Diabetes Educator, or CDE back in the old days) to teach me in those first scary and overwhelming days. 

Now that we have rapid acting insulin, continuous glucose monitors (CGM), insulin pumps and apps to help figure out carb counting, the daily life of PWD is both easier and safer. But as tools and techniques have changed, how have we addressed growing and updating the knowledge we need to live our best diabetes life? We still have an army of trained, dedicated pros, but how are they keeping us current on best practices, tips and tricks? 

In my case, somewhere along the line the "Meal Exchange List" got dumped and replaced with "Carb Counting." If I recall correctly, when that change happened there wasn't a push to retrain patients that I was aware of. Somewhere along the line it came up in conversation and I got a 'down and dirty' explanation on how to count carbs and we figured out how to dose insulin with that information. 

When I started using a CGM in 2005 the process was more formalized. Dexcom had training materials that my CDE and I used to learn how to use it and check my proficiency. When I moved from multiple daily injections to pump therapy (first with Medtronic and now with Tandem) a similar formula was used. For the most part, these big changes in how I manage diabetes have been big events where my DCES gave me training and checked my knowledge and skills before turning me loose.

But what about the skills and knowledge gaps that I don't know about? Usually those might be identified in an appointment with my Endocrinologist or DCES if my A1C is out of whack or CGM data uncovers an issue with lows or post-meal high blood glucose readings. I could also look at the ADCES patient education pages, and comprehensive as it is, it doesn't directly fulfill my individual needs. But what about things that aren't obvious, or that it might take a longer conversation to uncover?

Here's a thought: patients could benefit from formalized "Continuing Education" just like our professional care team does. Ideally it would leverage online skill and knowledge assessments. We all do online surveys from time to time so this isn't anything revolutionary or new. This would allow our DCES to tailor our training to address what we need without taking up precious appointment time. It would be limited to the areas pertinent to our type of diabetes, the tools we use, and the skills necessary to have a healthier life.

Would it put DCES out of business? No--if anything it would increase the number of patients they can help by making more efficient use of the time they spend with patients. Identifying their needs before they walk in the door would allow more time to be spent on teaching as opposed to assessment and then teaching. The patient and the DCES would focus on skill and confidence building within an evidence based framework. No more shooting in the dark or wondering if the patient has the knowledge they need or if an opportunity was missed.

Continuing education for patients: it is long overdue.