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.

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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

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!

Happy to recycle

Last night as I was organizing some drawers, I stumbled across a few folders from the hospital. In them was a bunch of info and documents from the hospitalization when V got diagnosed with T1D and from her first Endo follow up visit. I have to give it to the hospital: they pulled out all the stops and gave us a ton of info and resources. There were even flyers for medical bracelets. And there was a folder from JDRF with a welcome letter that started out with “You are not alone.” They did it everything to set us ip for success. And it was with some amusement that I looked at the records of our follow up appointment. Initial A1C: 12.3. Uncontrolled diabetes. Possible Celiac (wish that didn’t change to “definite Celiac” a couple of months later.) And at the bottom of the page, there was our first sliding scale.

Yep, like many others, we started with the sliding scale, where we had three types of insulin, mixed two of them once a day into one shot, and had to stick to a fairly rigid meal schedule both time and carbs-wise. It was ok for the first couple of months and in some ways it was actually helpful because if gave us some structure and some concrete rules to follow. It also allowed us to not need an injection at lunchtime in school, which made things simpler. But as we gained more experience in diabetes management, it started to feel more and more forced. We felt like we were feeding to V’s insulin schedule instead of giving insulin to meet V’s needs.

We ditched the sliding scale a few months after diagnosis and never looked back. And last night, after looking over those papers from 2013, I was happy to recycle them. We’ve come a long way since V’s initial diagnosis and we keep moving forward.

Type 2 diabetes: the struggle is just as real

Why spend time talking about Type 2 on this Type 1 blog? Because it’s Diabetes Awareness Month, not T1D Awareness months. So many people live with T2 and they face some real challenges. In some ways they have it even harder than T1s. There’s so much misinformation, stigma, shame and blame. Ever noticed how diabetics seems to be the butt of everyone’s jokes? I decided to google “diabetes jokes” memes and these were one of the first ones that popped up.

Funny? Try living with T2 and then tell me how awesome it is to live in a world where everyone believes you are a lazy fat slob who brought an illness onto themselves by eating too much sugar.

Here’s a helpful article that talks about the real challenges of living with T2. Turns out T1s and T2s have a lot in common.

Chances are you know someone with T2D. And chances are there are more people around you who you don’t even realize have it because they are too embarrassed and keep it a secret. Let’s treat people with T2 diabetes with kindness and empathy they deserve.

Clueless, school health tech variety

I pegged her as clueless when she called me about my son coming into health office complaining of mild stomach pain. She tried to insist to me that because he’s had it for a couple of days, even in the absence of any fever, diarrhea, vomiting, or any other symptoms, I should take him to the doctor.

This was beginning of new school year and she was a new health tech. I didn’t like how things were unfolding from the get-go. Initially V tried to defend her. But a few days later she told me “Mom, you are right, she IS clueless.”

Turns out V stopped by the health office to get something. The following exchange occurred:

HT: I know you have diabetes, but what stage?

V: ??? I have…Type 1 Diabetes?

HT: Yes, but what stage is it?

V: ??? I am…out of honeymoon phase?

HT: But what STAGE?

V: ??? I’ve…had it for 5 years?

Was she confusing diabetes with cancer?

Thankfully it turned out that this health tech was a very temporary substitute.

Incompetence level: advanced.