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.

Screwy A1C? Maybe its Your Kidneys...

You've got an appointment with your GP or Endocrinologist coming up and they set you up for a Hemoglobin A1C test. You get it done and on the big day it is higher than you expected. Annoyed, you start thinking of how in the world was it so high when your finger sticks seemed decent or your Continuous Glucose Monitor (CGM) data looked pretty good. If you are like me, we start thinking of how we're going to explain this. Before the appointment starts you feel like your already on defense.

To begin with, let's review what an A1C actually is. According to the CDC, it is a blood test that measures your average blood glucose over the last three months. Specifically,

"When sugar enters your bloodstream, it attaches to hemoglobin, a protein in your red blood cells. Everybody has some sugar attached to their hemoglobin, but people with higher blood sugar levels have more. The A1C test measures the percentage of your red blood cells that have sugar-coated hemoglobin."

So what does this have to do with kidneys? First, if you have Diabetes there is a 1 in 3 chance that you have Chronic Kidney Disease (CKD is a complication of diabetes more accurately called Diabetic Nephropathy). Second, if you have CKD you could also have anemia. If your kidneys are not working well, they may not be making the red blood cells your body needs. The American Kidney Fund does a great job explaining the details of anemia. If your doctor hasn't told you that you are anemic, a quick look at any of your hemoglobin tests will indicate that if the numbers are on the low end. Even if you don't have CKD, you still could have anemia. One study of 200 patients found that 22% had anemia, and of those 41% had normal kidney function and in 27% the cause could not be determined.

But what does this have to do with your A1C? Studies show that anemia has an impact on A1C, and one study cautioned that anemia should be fixed before A1C results are used to guide diabetes treatment decisions. That study has links to other published studies reinforcing the point.

So as a patient, how do you explain this to your doctor when they inevitably say something like "your A1C is too high" or "you need to do better at controlling your diabetes." Yeah--that annoys me, too and if you're going to hunt bear, bring the big guns. Last month, I had a first appointment with a new GP and knew this conversation was coming. What I did was to do a little homework beforehand.

First, I got the results of my most recent A1C, hemoglobin (HGB) and red blood cell (RBC) tests. On April 30, 2021 my A1C was 8.6%. Ugh! My hemoglobin on June 16, 2021 was 9.7 (normal range is 12-17 g/dL) and the RBC was 3.13 (normal is 4.2 to 5.4 M/cmm).

Next, being a Dexcom CGM user I went into their Clarity online system and ran a custom report. I configured it to start on April 30 and going back 90 days so that the CGM data would match the same period the A1C was supposed to measure. I printed it out to take to the appointment.

One thing about CGM reports: I've found that a lot of my doctors are impressed with the technology and once they understand it they find it is a useful tool. A lot of specialists don't have the time to learn about it and that is where we can be our own best advocates. More than once I've carried a copy of the summary page when I thought glycemic control might be part of our conversation. By and large when I show it to them, explain how I use it to optimize control of my diabetes it helps reassure them that I am an informed partner in achieving the best possible outcomes we can achieve by working as a team.

I also printed out a couple of the articles listed above to give to the doctor. First to add some credibility to what I'm saying I wanted to send a signal that I'm relying on vetted, peer-reviewed information--not some Facebook charlatan. Second, with the way doctors have jammed schedules and also want to stay informed, I was trying to support him with both challenges.

When appointment day arrived, one of the first things the doctor said was "you need to get your A1C down." I replied, "Well doctor, I have CKD and anemia. That skews the A1C higher than what my Continuous Glucose Monitor data shows. The A1C is just one data point, but the CGM takes a measurement every 5 minutes which provides 25,920 glucose reading over the same 90 days. While my lab A1C was 8.6%, the equivalent A1C based on CGM data was 7.6%"

I didn't bother explaining the virtues of Time In Range (the emerging gold standard of glycemic control) or standard deviation or other statistics. Our time together is limited and my role is the patient getting care and not an educator. But in the end, I made my case, got the care I needed (for the most part) and hopefully impressed my doctor with the impression that I was an informed partner.

I hope this is helpful and that you don't need to actually need to use this.

Kindest regards,

-Tom