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!

 

 

 

 

 

Refill accomplished

What every T1’s fridge butter compartment should look like:

A thing of beauty

What we won’t be doing again: signing up for auto-refills, because for some reason they box is into a rigid 90-day refill schedule. If we refill manually we can do it after about 70 days.

What no one should ever be faced with: a ridiculous retail price of insulin. This is so wrong. Thank goodness we have GOOD insurance.

Adventures in teen looping: expectations vs reality

November is diabetes awareness month. I blogged every day in November in past years. I don’t have it in me to do it this year but it’s a good reasons to at least write something here and there.

So, looping… For those who don’t know, looping is a DIY system created by a few genius T1 peeps and parents, that allows a small device called Riley Link to establish communication between insulin pump and CGM, so that it can automatically adjust basal insulin based on CGM trends. You gotta do a bit of work. I needed to do very basic coding, following amazingly detailed instructions, and built an app that loaded on V’s phone. Now instead of using her pump’s remote control she uses the phone app.

This is the set up with phone app and Riley link

I’ve waited for a long time for Loop to be compatible with Omnipod, so when it happened late spring we quickly jumped in.

Now, some loopers have amazing results. Their BG stays almost a flat line no matter what they do. But it takes a lot of work and dedication to dial in all the settings first. And it helps when people have predictive schedules and eating habits, and lean toward lower-carb diet. With a teen, we have chaotic schedule, higher carb diet, and stupid puberty hormones that constantly mess things up. Besides, teen’s cooperation to test settings is required. It’s easy enough to test overnight basal rates. But everything else that requires, during waking hours, either fasting and/or very careful and methodical consumption of exactly measured carbs to observe BG response to insulin, good luck!

Actual footage of my teen when I ask her to test settings

So, when we started looping I was aiming for two things: better and consistent control at night and decrease of burden. Improved A1C would be a bonus but not necessarily required, since it was already reasonable. I was not dreaming of straight lines. Good thing I wasn’t because we aren’t getting any! But we are getting the two primary goals accomplished.

Most nights are great. V stays and wakes up in reasonable range. Highs and lows still happen, but they are less frequent and less severe. We all are sleeping a lot better!

Last night’s graph. Started with a low that was caused by over-correcting earlier, but bounced back nicely and stayed in range all night.

V spends less time thinking about diabetes because Loop does a lot or work for her. When it predicts a low, it reduces or shuts off basal insulin, so it often results in “soft landing” in the 70’s or 60’s and then back to target range without needing to treat.

Loop has been suspending insulin for a while, so a bad low was avoided and BG recovered nicely by itself.

When V forgets to bolus (which happens more than I’d care to see), Loop tries to compensate with extra basal. What would easily be 400-500 BG without loop becomes 300’s.

Busted! Didn’t bolus till 1 hr after the meal. Loop working hard to compensate.

Still bad but much less bad and easier to get under control. Plus V loves using the phone instead of the clunky PDM.

And her A1C dropped 4 points without putting any more effort into Diabetes management. Sweet bonus.

So, no flat lines for us, especially during the day. But we are still better off with Loop than without it. And V’s endo is very supportive.

We’ll take it!

Where everything is gluten-free…

Nope, not some utopian world. I’m talking about Gluten-Free Expo, this year re-named as Nourished Festival.

It gives me something to look forward to in February. No offense to those who celebrate, but Valentines Day is not my thing. Couldn’t care less. And after the holiday season and then a couple of family birthdays in January, February has nothing that I’m particularly excited about.

Last year’s festival

This will be my third time going to the Fest. Last year V came with me and loved every minute of it. It’s not often that she has an opportunity to be somewhere where she can eat EVERYTHING. And we don’t have to worry about asking any questions or double checking. And for people with other allergies, this year’s Fest is going to be even easier to navigate because of better signage and ingredient/allergens indicators.

Happy sampling

Diabetes management during an event like this is tricky. We have to SWAG (scientific wild ass guess) carb count on everything. Last year we failed. V started in good range and despite what we thought was aggressive guessing and dosing still ended up with high BG. This year I expect that we will fail again. But whatever! It’s totally worth it.

I’m looking forward to discovering and sampling new gluten free products, getting new ideas and inspirations, and spending some time in a setting where EVERYTHING is gluten-free.

Join me and save 20% with code ADVANCE if you purchase tickets by 2/8/19.

Get your tickets here

DISCLAIMER: Nourished Festival is providing me with free entry. I am not compensated in any other way, nor am I asked or expected to review or promote any products or companies associated with Nourished Festival. All opinions are my own.

A Tale of Three Jersey Mike’s Restaurants

It was V who noticed a big sign on the window of one of the Jersey Mike’s restaurants: “Gluten-Free Bread Available.” Do you have Jersey Mike’s near you? They make yummy sandwiches. And let me tell you, it’s not common that a sandwich place will have gluten-free offerings. Naturally, we had to check it out.

We have a few locations near us. I was rather skeptical as V insisted we visit one of them. As we got in line, I noticed this sign!

Photo is a little blurry, but you are looking at very clear and detailed instructions on how to prepare a gluten-free sandwich in a way that would minimize chances of cross-contamination.

As we placed our order, our expectations were met and exceeded. Without us even asking, staff informed us that they would be preparing V’s sandwich in the back using fresh ingredients that were not part of the “buffet” set up at the counter. They had a couple of different sizes of bread available. They knew very well what ingredients were gluten-free and uncontaminated.

We had to wait a little bit longer for V’s sandwich but it was completely worth it. It was delicious. We went back to this location several times and had excellent experience every single time. Instant winner, shiny A+!

When sometime later we came to a different location, we assumed that we would have a similar experience. We proceeded with our order without asking any questions. Big mistake.

The staff started preparing V’s sandwich right at the counter. “Don’t you do it in the back, separately?” They looked puzzled by our question. “No, we change gloves and put a clean piece of paper on the counter.” Oh crap. They were rather clueless about cross-contamination. V was very hungry, so we decided to risk it but were watching them closely. On at least one occasion, the staff set the sandwich on the counter, then immediately realized it, picked it up right away and placed it on the paper. If my looks could kill he would have dropped dead on the spot. This was not safe. We really should have walked out, and if V had a history of getting sick after ingesting gluten, we would have walked out. I felt extremely uneasy and unhappy. I debated going back in and talking to staff but decided against it. It was not their fault that they did not receive proper training. Needless to say, we will not be returning to this place again. Instant looser, big fat F!

By the time we visited a third location, closest to our home, we adjusted our expectations. I scanned for a sign that we spotted at the first location about safe handling of GF orders. It was nowhere to be found. There was a different sign by the counter, a standard disclaimer that while GF ingredients are available, they may come in contact with gluten and that safety is not guaranteed. We asked the questions about ingredients, preparation and cross-contamination. First time ordering, staff seemed reasonably well-informed. They made V’s sandwich in the back; however not all ingredients were safe for her. Bacon was grilled on a shared grill. And they did not have uncontaminated avocados. On a second occasion, staff were less informed, though receptive to my requests. I had to ask them to prepare sandwich in the back. And when I noticed they used avocado out of a container at the counter that is used for all breads, spreading it with the same utensil, they had to start over with a different piece of bread. While I do appreciate that overall staff were more informed and accommodating here compared to the second restaurant, I think it’s completely worth it for us to drive just a little bit farther out to the first restaurant. This third restaurant gets a passable C+.

Three branches of the same chain, three very different experiences. And moral of the story is to never assume and to always ask questions before ordering. Sometimes it ain’t easy being gluten-free.

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