Unhelpful

I am a member of a big diabetes facebook group. Due to a large overlap between T1D and celiac, it often comes up. When someone asks a question in regards to the interplay between the two, in general responses are helpful and informative. But once in a while I see things that really rub me the wrong way.

Cue to about a week ago, when a parent posted about their 6-year-old T1, who was very recently diagnosed with Celiac. They said that since going gluten-free, kid’d blood sugars have been running high and they were having a hard time managing it. They wanted to know if it was common.

The responses that followed emphasized that GF substitutions tend to be higher in carbs, which is 100% true. But the ensuing recommendation was to cut them out. Research Keto options! Eliminate processed foods! Home-made food is better anyway! When I was pregnant it was easier for me to just avoid those foods altogether!

FULL STOP

Did no one fully read the post? We have a 6-year-old kiddo who, on top of T1, just got diagnosed with Celiac. Their world got turned upside down again. They were just getting the hang of how to manage diabetes and deal with different foods and live with various limitations. Now they have to do it all over again, and your recommendation is to restrict even further?

Those people who made the comments are probably not parents of little kiddos with a double whammy of a diagnosis. And maybe not parents at all. Because parents know that it’s hard enough to feed a 6-year-old as is. With some of them, good luck if you can feed them anything other than PB&J sandwiches and goldfish crackers. And so many snacks are all about gluten. Enter diabetes, and you must start counting carbs and doing complicated math. Add celiac, and now you are also scrutinizing every label for obvious and hidden sources of gluten, you can no longer rely on a quick stop at Subway or pizza take out for when you are on the go or simply have no time or energy to make a meal. And the kiddo cannot eat so many foods, and at 6 they can barely understand why. This is hardly the time to recommend restriction.

Oh and by the way, for those with Celiac, gluten interferes with absorption of nutrients and vitamins. So when people go gluten free they start absorbing ALL the things better. And it can translate to needing more insulin than before because now more carbs are absorbed. So the first answer to this parent’s question should have been YES, this is a common occurrence after receiving a correct diagnosis and starting a gluten free diet. This is a good thing actually. It means that healing started.

As to what I would recommend, first it is to increase insulin as needed. Work with your Endo, be prepared that things may change quite a bit in the next few months. Go ahead and find replacements for favorite foods. Find foods that your kid will eat and will enjoy and that will result in the least amount of restriction possible. Give the entire family some time to adjust and adapt. Later on if you want to experiment with Keto recipes, or do a more drastic diet overhaul, go right ahead. But it’s OK to find your footing first.

While I’m at it, let me proudly re-display one of our favorite substitutions: frozen GF waffles from Trader Joe’s. Clocking in at 21.5g of carbs per waffle, compared to about 15g of their gluten-containing counterparts, they are delicious and totally bolus-worthy.

 

 

Answer Key

A few days ago I posted this problem on my Facebook page for this blog

Let’s do diabetes math together. Based on nutritional information presented, solve the following problems. Show your work.
1. How many grams of carbs are in each popped cup?
2. How many grams of carbs are in one bag of popped popcorn?
3. If you estimate 17g of carbs for entire popped bag, and your insulin to car ration is 1 unit per each 4.2 carbs, what’s the total amount of insulin needed to cover all 17g?
4. Based on your answer to #2, how many units of insulin should you have actually given?
5. In a short paragraph, describe why blood sugar was nearly 400. Bonus: what prevented it from being even worse?
6. Explain WHY the heck Costco had to make this so complicated? Bonus points will be awarded for creative responses and GIFs.

Quick backstory: V went to hang out to a friend’s house and ended up with BG of nearly 400. She swore to me she counted carbs accurately. One of the thing she had was some popcorn. A couple of days later she made same popcorn. Out of pure curiosity I looked at the nutrition label. My brain broke.

Intuitively I knew that V miscalculated carbs big time. But by how much? The accurate carb count was eluding me. How many carbs per cup? How many cups in each bag? Normally we are pros at counting carbs. This labeling had me thoroughly stumped. After thinking it through some more and asking around, it’s only fair that I give you my answer key to the problem.

  1. The column on the right clearly states that each popped cup contains 3 g. of carbs. This, I think, is a lie. Rule of thumb has always been count 5 g. of carbs per each popped cup of popcorn. There’s nothing in this popcorn that would make it lower in carbs. I don’t know who is the ultimate authority on popcorn nutrition facts, but even this pro-popcorn website, which clearly paints it as God-sent food, gives each popped cup a 6 g. count.
  2. Since there are 2.5 servings per bag, and one serving makes 5.5 cups, that’s 13.75 cups X 3 g  per cup, which is 41.25 g in one bag. Alternatively, per left column, 17 g. in each serving times 2.5  = 42.5 g. per bag. Close enough. Except if we use the rule of thumb carb count, then we get 68.75g per bag, which is a hugely different.
  3. Best on the 17 g. estimate, 17 divided by 4.2  =  4.05 units of insulin.
  4. Best case scenario, V underestimated by a whopping 24.25 carbs. 41.25 divided by 4.2  =  9.8 units of insulin. More than double (!!!) than what she gave herself. Worst case scenario, if we use 5 g. per popped cup count, then she should have given 16.6 units of insulin for the whole bag.
  5. V’s blood sugar was nearly 400 because due to confusing labeling she did not count her carbs correctly and gave herself far less insulin than she actually needed. (Fun fact: popcorn used to be “free food”. When V’s carb rations were 1:15, it meant that she could have one cup of popcorn without needing to give insulin. Those days are gone, gone, gone.) Now, for bonus points, why it wasn’t even worse.
    1. Loop! Loop predicted a much higher BG based on what was actually happening and tried to hold it back with a bucket worth of basal insulin.
    2. The serving size does not appear to be correct either. For the sake of science and not having anything to do with wanting to eat some popcorn, I popped a bag tonight. Using crude measuring tools such as a measuring cup and a big bowl, I transferred popcorn out of the bag into the bowl one cup at a time. I counted roughly 9-10 cups. Nowhere near 13.75. So perhaps V’s carb count was slightly less off.

As to question 6, beats me! But here’s a very relevant meme. Now, give me ALL the bonus points!

 

 

 

 

 

T1D and GF 101

V has a new math teacher this year. When my husband and I introduced ourselves at curriculum night in the beginning of the year, we mainly wanted to address some concerns we had regarding V’s learning. The teacher, however, had some really basic questions about V’s medical stuff and whether she would be sick a lot and miss many school days. It was clear that no one informed her of anything, even though V has a 504 plan and it should have been reviewed with her. When we got home, I sat down and composed a T1D and GF 101 email to help her better understand V’s needs.

Hello Ms. W,

It was nice meeting you this evening at curriculum night. We are hoping that this year will go better for V than last one. She did struggle with some material but also a big problem was her procrastination and lack of organization. We will monitor her grades and progress more closely this year and please let us know if you have any suggestions/recommendations on how to better support her.

In regards to her medical issues, let me just briefly explain them to you, as I see the school had done an outstanding job of giving you this important info. /sarcasm. 🙂

V has Type 1 Diabetes – an autoimmune disorder where the pancreas stops producing insulin. There is no known cause and there is no cure. She needs background insulin 24/7, as well as additional doses for any foods containing carbohydrates. She wears two devices. One is an insulin pump, another one is a continuous blood glucose monitor. Her pump (also called a pod) has a remote control which she uses to make dosing adjustments, give herself mealtime insulin, etc. While the pump delivers pre-programmed background insulin dosage 24/7, it does not “think” or “act” on its own, so V needs to enter her blood glucose and carbs data into the remote whenever she needs to make adjustments or deliver insulin dosage. She rotates her pump site every 2-3 days. She likes to wear pods her arms and legs, so they are often visible. Normally pump will be pretty silent, although you may hear quiet clicking form time to time  – it means insulin is being delivered. Once in a while, it may malfunction and then it will make quite the noise! We lovingly refer to it as “the song of its people.” Hopefully it won’t happen during class. At any rate, V has all the back-up equipment on her and in the health office and can address issues quickly and independently, you do not need to worry about it.

The other device – continuous blood glucose monitor (Dexcom), she usually wears where it is concealed by her clothing. It measures her blood glucose in real time and transmits the data to the app on her phone. This is the device that may make noise sometimes, to alert V if her blood glucose is low or high. If you hear police sirens or really loud beeps, it’s probably V and, for better or worse, no one is getting arrested. I’m sure she already explained to you that she may need to use her phone in class to monitor blood sugar. Dexcom gives V a break from having to poke her fingers to know her blood sugar, and a huge peace of mind because it alerts her to high and low blood sugars, so she can take quick action and stabilize it.

The funny thing is, managing diabetes requires a LOT of math. V should be an expert in ratios, division, multiplication, fractions, percentages, proportions, and some other math functions.  “Should” being the operative word here. As I’m typing this email, she’s reminding me “I suck at math, I hate math!” Followed by “I don’t hate math, I struggle in math.” Followed by ” I hope to get better.” Yes, there is hope!

V has a 504 plan in place. It contains some pretty basic accommodations, such as being able to use her phone during class ONLY for diabetes management purposes, testing her blood sugar before exams, being able to drink and eat and use the restroom as needed as it’s part of managing diabetes, etc. I will make a copy for you over the weekend. V is fully independent in managing diabetes and she is generally responsible and takes good care of herself.

V has another medical condition – Celiac – also an autoimmune disorder (because if you have one, why not have two! 😊 ), where her body cannot digest gluten – a protein found in wheat, barley and malt.  Ingesting any gluten leads to damage to the lining of small intestine. She is on a strict gluten free diet, and she is very good about sticking to it, reading labels, and being very careful to avoid gluten.

V can eat anything as long as it does not contain gluten (or poison 😊), including candy. She just needs to give herself insulin to cover the carbs.

Neither her devices, nor diabetes, nor Celiac, should interfere with attendance. V does tend to get sick a little more than average, and it may take her a little longer to recover from illness,  but it is not excessive. If for some reason we are facing unforeseen medical complications that may be impacting either her attendance or ability to do schoolwork, we will communicate it to you ASAP.

Thank you for taking the time to read the info and hopefully it is helpful. Please feel free to reach out to us if you have any questions or concerns or need more information/explanation.

We look forward to a great school year!

Respectfully,

Polina B

The teacher responded the next day thanking me for both the info and the sarcasm about not being informed. And now that I’ve written the letter, I will keep it handy for any other occasion when a basic explanation is in order.

Back to school: First day of 8th and 5th

Diabetes Math

Here’s a little math problem for you. Your 13-year-old T1 has been sick with a nasty cold for a couple of days. At 2 AM you wake up to Dexcom alarm and see that your T1’s BG is 275 and trending up. You get up to give her a correction bolus. The pump says you should give 4 units of insulin for correction to bring BG to target of 100. You also notice that there are 17 units of insulin left in the pod. Your T1’s basal rate of insulin is 2 units per hour and you will not be able to change the pod until about 7:30 AM. You have ruled out a site failure, determining that it is working more or less OK. You are able to administer insulin correction via the pump and/or via a shot. How much insulin do you give her? How do you deliver it? For a bonus question, how long will it take you to fall back asleep after you are done?

If you quickly run the numbers in your head, it looks relatively simple. 17 units of insulin in the pod minus 11 units needed to last until 7:30 AM minus 4 units recommended for correction = 2 units left to spare. Administer a 4 unit correction via a pump. Fall back asleep within next 15 minutes.

Nice try. You get an F in diabetes math. If you administer a quick 4-unit correction, you could probably get back to sleep in 15 minutes. However, you will be woken up again very soon because the BG will continue to climb up, the alarms will continue to blare, and you will have to do this all over again. Diabetes math is far more complicated than what it seems.

The remarkable thing about our little math problem is that every bit of information I provided is relevant and changes the equation. So let’s do it together.

Age and sickness are important. Teenage hormones are not kind to T1D and can lead to heightened insulin needs, sometimes unpredictably. Illness also causes BG to go up. Both factors, combined with the fact that due to illness V was sedentary for a couple of days, lead to increased insulin resistance. The pump is not programmed to change its calculations based on these constantly moving targets. It recommends the amount of insulin needed based on preset ratios and estimated active insulin remaining (AKA IOB or Insulin Onboard). So when you see a BG of 275 and trending up, under these circumstances you should think about how much more insulin it’s likely going to take to bring V into a better range. This knowledge only comes with experience and trial and error.

I know from experience that in this scenario 4 units are completely insufficient. I also know from experience that when V’s BG is over 250, insulin resistance kicks in like there’s no tomorrow. And let’s not forget that her illness, hormones and lack of activity are also contributing to insulin resistance. This is time to dose aggressively. Not only will you need to give a much bigger correction, you should also increase basal insulin for a couple of hours. How much? Once again, informed by trial and error data, we need to jack it up to 200%. If you do the math again, you will quickly realize that 17 units left in pump are not enough.

Here is the answer. Give a correction of 7 units via a shot. Not only does it save you insulin in the pod, it delivers it more quickly and bypasses any potential absorption issues with pump site. The extra 3 units over the recommended 4 will account for insulin resistance and for the fact that by the time insulin starts working V’s BG will already be around 300. Then, increase temp basal rate by 100% (to 200% total) for 2.5 hours.  Three hours would be ideal, but there is not enough insulin left in the pod. 4 units for 2.5 hrs, plus 2 units per remaining 3 hrs equals 16 units. V will make it to 7:30 AM with only 1 unit to spare.

Mind you that you do this math in your head at 2 AM because you can do this shit like a boss. Then you go downstairs to get insulin vial and syringe. You go back up and turn on the lights. You are fully awake now, and you better be fully awake because you have to draw the inulin and do the shot. You go back to bed hoping that your math is not off by too much. Experience tells you that in this particular scenario you may not have given enough insulin (believe me!). Forget target BG of 100. Due to illness you haven’t seen it for a few days. Your goal is that 1. BG will start trending down instead of up and 2. at 7 AM V will wake up with BG closer to 200 than 300. But it’s 2 fucking AM and you need to go back to sleep. Which, to answer the bonus question, takes you at least one hour.

When you wake up in the morning, while you may be feeling tired, foggy and grumpy, you are rewarded with an A in diabetes math.

BG peaked at 300 around 3 AM and went down to 182 by 6:45 PM. GOALS MET!

Dude, where’s my insulin?

When I’m at work, I rarely pick up my phone. Too many robo-calls to begin with, and if someone really needs to reach me they can either text me or leave a voice mail. I only answer if I’m expecting a phone call or if it has a potential of being really important. For example, when I see a phone number from kids’ doctors, I pick up. And when I see a phone number originating at V’s school, I also pick up.

Several weeks ago, my phone went off and I recognized that it originated from V’s school.

V: “Hi Mom, it’s me. My pod got snagged during PE, so I came to the health office to change it, but my insulin is not here.”

Me:??? What do you mean it’s not there? It’s supposed to be in the fridge.

V: I know, but it’s not there. We looked everywhere. We tried to tape the pod down but it’s not working well.

Duuuuuuude. WTF?

V keeps a box with back-up pump supplies and a vial of insulin in the fridge in the health office in school because things happen. Pods fail sometimes, or they get ripped off. A brand-new vial of insulin was placed in the refrigerator. It was in the box. It had V’s name on it. Who would remove it and WHY?

I asked V to keep looking. This was around lunchtime. Me and my husband were both about 30 minutes away from school. That particular day I had a very busy schedule and could not leave work save a big emergency. I called my hubby and put him on standby, just in case.

V called back. The insulin was nowhere to be found. And lucky her, she’s the only diabetic at school right now, so they did not have anyone else’s insulin there either. V said that she thought the cannula was still in, and that she’d try to tape the pod again and make it work another few hours before school was over. We left at that, she gave herself a bolus, and I asked her to keep me posted.

In the next hour, her BG continued climb up – not an encouraging sign. V sent me a photo of her taped up pod and it was not pretty. Much as I did not want to admit game was over, it was sinking in.

I called my hubby again. Luckily he was able to leave work early, picked V up from school and took her home. Needless to say we were upset. But it’s never happened before. And we really like and have a good relationship with the health tech. So a simple email was in order:

Heath tech responded promptly

Good! I would want administration to know.

What do I think about putting a vial of insulin in a clearly marked container? Sure! This is what V delivered to health office on Monday.

Sometimes we nail it…

…and sometimes we don’t.

Thanksgiving yesterday was ok diabetes-wise, but definitely not on the “nail it” category. V was low around lunchtime. She ended up over-correcting and/or over bolusing. And we were too busy to pay any attention to her BG in the afternoon. So when we were about to sit down for dinner, we realized that her BG was less than optimal, in the 200’s. We made the best guess in carbs and she bolused. She continued to go up past 300, then began trending down. When it was time for dessert we gave her a shot. And we over-did it. She was dropping, dropping, dropping. And so she had some juice and a bite of pie and we suspended her insulin delivery. And…you guessed it… we over-did it again. We were up a couple of times at night dealing with Dexcom alarms and administering corrections for high BG.

Oh well. T1D is a jerk and doesn’t care about holidays. On the upside, because she was having fun with friends, the glucocoaster didn’t seem to affect her much. And she ate everything she wanted. So FU T1D.

Thanksgiving glucocoaster ride

Unicorn

Unicorn is another important diabetes term of endearment with a couple of meanings. First definition is a BG of 100. Second definition is when the CGM and BG readings match perfectly. Once upon a time we caught an extremely rare double unicorn!

And just because, here is a picture of our dogs wearing a unicorn headband. They were not pleased.