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!

Coaching in Type 1 Diabetes: A Patient's Perspective

One of my "Twitter Buddies" is a Certified Diabetes Educator who is working on an advanced degree. On Twitter she asked the question, "Okay, working on a school discussion. No better people to ask them those with DM themselves: What's your favorite coaching strategy from your HCP to help you prevent complications? #DSMA" Since my answer would run longer than 280 characters, here goes.

I essentially have two distinct health care teams. My primary care provider is a GP who treats veterans in the Veterans Affairs healthcare system. That patient population likely has fewer people with Type 1 Diabetes than a more diverse population than those seen by a GP in private practice. He generally helps me with regular health concerns. When it comes to Diabetes, he generally defers to my Endocrinologist while at the same time helping me get care for some of the Diabetes-related issues.

The other part of my team is led by my Endocrinologist who divides her time between the VA and work in a teaching hospital. This gives her intimate familiarity and experience at helping me manage the nuances of Type 1 Diabetes.

When I first met my PCP several years ago, he reviewed my electronic health record and said, "You need to get your A1C down." This is something I already knew going back to 1994 when I was diagnosed and shortly after the Diabetes Control and Complications Trial was published. That trial basically said there is a definitive scientific basis for the notion than lower blood glucose levels result in a lower incidence of common complications arising from Diabetes. What my PCP was saying was something I already knew, was something I was working hard to accomplish on a daily basis, but because of challenges from other complication it was something I was unable to do.

I told him something along the lines of "I've read the DCCT, I know what it says, and my Endocrinologist and I are working real hard at optimizing my A1C. However, between gastroparesis, hypoglycemia unawareness, impaired kidney function impacts on insulin efficacy and despite frequent blood glucose monitoring, use of a Continuous Glucose Monitor and the most advanced insulin pump available to me, this is (for now) as good as it gets." What I was communicating was that I am aware of the importance of lowering my A1C, but am also knowledgeable about my illness and the various factors in my particular situation that make this goal challenging. I also said, "What I need help with from you is in managing these variables." I was asking for his expertise and experience and showing him that I was going to be cooperative and willing to do my part with helpful guidance from him. Just saying "You need to lower your A1C" was simple but not helpful - what I was looking for was concrete, actionable and realistic tools and tips to meet that objective. So far, with that common outlook in place, this relationship has worked out pretty well.

With my Endocrinologist, the coaching relationship is a bit different. I am fortunate that our relationship is (as I see it) a fully collaborative partnership. As we discuss my case, we take into account clinical best practices and work them into realistic lifestyle choices that will most safely lead to optimal glycemic control. She is in close contact with my gastroenterologist, nephrologist and cardiologist as well as my PCP - the idea being that she stays informed about the other issues having a bearing on my Diabetes management.

While my healthcare team helps "Coach" me to be as healthy and happy as I can be with all of these challenging conditions, I believe that just like an athlete, coaching can only do so much - the actual performance is up to me.