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!

Simple Tips for Coping With Diabetes

"How do you eat a whale? One bite at a time."

That is what a wise old Army First Sergeant told me once when we were getting hit with a hundred tasks at once, each more important than the last. In the 12,186,720 minutes that I've had Type 1 Diabetes, that advice has come to mind more than once.

We know that dealing with this is a 24/7/365 proposition. Even when we are asleep, it can still wake us up and demand our attention. Most of the time, we are on our own. If we get an hour to talk diabetes with a doctor every 3 months, that amounts to 0.046% of each year. If we are lucky, we get as much training in managing diabetes as we would if we took a CPR class. In other words, we get to mange and be held accountable (by doctors, family and friends) for mechanically managing a complex biochemical process with potentially deadly drugs using inexact tools and relying on minimal training. Oh yeah - there is no end in sight, and no reward for winning.

It's no wonder that this gets us stressed out and overwhelmed from time to time. We all have days where everything works perfectly. More likely that insulin bolus is as effective as a shot of water, the carb data we use came from a practical joker, or our blood glucose meter spits out numbers that came from a lottery number generator. In other words, we do our part right but it doesn't work. All of those failures - one after the other - can destroy our confidence (a critical thing we need when trying to stay on top of a potentially deadly disease).

I've been playing the D game for 23 years. I've had ups and downs, and more than once I've wanted to throw in the towel. But we don't have that luxury. Like another friend said, "you don't have to like it, you just have to deal with it." Here's how I try to keep things on an even keel and to keep a sense of calm in the process.

• Don't beat yourself up over the past. Learn from it if you can, but if your carb count was off, your bolus didn't work or that correction didn't budge your BG one iota - forget it. You can't change it - it's over. If you had a 12 hour run between 110 and 115, celebrate. Use that to leverage your confidence. Learn from the bad, celebrate the good and move on.

• Focus on today. You know what you need to do: do it right. Test before and after meals, before driving and when you feel off. Use the best available data for carb counts. Get the insulin going in a good location and on time. Every time you do something D related, do the best you can with the use of all the experience and judgement that you've accumulated in your D journey. I talk to myself silently as if I were explaining what I was doing and why to my endocrinologist or to somebody I was trying to teach. Today is the focus. If I give it my best effort, that is the best I can do. When my A1C results come back, I'll know that every day I gave it 100% and I'll be pleased with that, regardless of the number.

• Don't sweat tomorrow. If you think about how many carb counts, finger sticks, boluses and corrections that you will have to do in the next 5, 10 or 20 years (or until there is a cure) it will overwhelm you. When I was a little kid, I watched my mom take a thyroid pill. I asked her how long she would have to do that and when she said "for the rest of my life" I was freaked out. I couldn't imagine that. The same goes with my own diabetes. One time I counted all the shots, fingersticks, etc. that I'd done. While the numbers were impressive and I thought I was one hell of a guy for having done all of that, it also made me think of what they might be a few years from now. Not good. Instead of worrying about that, I figure if I work hard today, tomorrow will take care of itself. 

• Help each other. Somewhere, somebody is out there who has been where you are now. Reach out - you'll be surprised how many people like you are willing to help. Likewise, you have wisdom that might help others. (That is why I write some of these things.) Twitter, Facebook and some online communities are great places to find those folks. There may be groups in your community as well. Keep your eyes and ears open - help and support might be just around the corner.

In a nutshell, diabetes can play hell with you psychologically, but it doesn't have to be that way. Do your best now and don't think about yesterday or tomorrow. Easy to say, but hard to do. But just like trying your best today with managing your diabetes, handling the mental part works the same way. Do your best, forgive yourself when needed and keep working at it.

You can do this!