Most-wanted gadget

V’s annual Celiac blood panel was done recently, and results are not great. Four years after diagnosis and her antibodies are still positive. Worse yet, the numbers crept up a little from last year. Last year things were heading in the right direction and her doctor was hopeful that with this blood work result everything would be in the negative. Not the case.

I’m really frustrated. What are we doing wrong? Obviously somewhere, somehow, V gets exposed to gluten. But where? Is there cross-contamination at home? We are not 100% gluten-free. We keep regular bread and bagels, cereal, some pre-packaged snacks, and that’s about it. All meals we make are gluten-free. We are extremely careful about cross-contamination. We have a dedicated toaster oven and a cutting board. But perhaps it’s not enough and we need to go completely gluten-free at home?

Or is the problem with restaurants where we eat? Once again, we found a few that we consider safe. However, because V does not typically have any reaction to gluten that she can feel or we can see, we have no way of telling if what she is eating is actually safe.

Or perhaps the issue was during the cruise, where getting a safe gluten-free meal proved to be rather a frustrating challenge? Since we did the blood work shortly after we returned, it may be reflective of possible cross-contamination there?

How I would love to know for sure. And guess what? There is actually a gadget out there that could help us. Nima Sensor will analyze a food sample and tell you if it contains any gluten. If we bite the bullet and go 100% gluten-free at home, we can test food at restaurants and maybe finally track down the source of cross-contamination.

There is one little glitch. The price of Nima Sensor is a cool $275. And that’s just for a starter kit. Since each food sample requires a new capsule, those will run you more. The website recommends a subscription of 12 capsules per month at a cool price of $60 per month. If we don’t do subscription, we have to pony up $72 for 12 capsules. Those capsules will go quickly if we want to test V’s meals when we dine out, even though we don’t normally eat out more than once a week.

So here I am, staring at this cool gadget, really wanting it. But it is simply too expensive.

What do we do? I have no idea. If you are reading this post and you have Celiac, I’d love for you to weigh in. I’m also curious if it’s a reasonable expectation for tests to be negative. It is really possible? Would you eat a product that, according to the label, was made on equipment shared with wheat, or is that a no-no? What about a product that is made in a facility that also processes wheat? It is unreasonable for us to think that we can live a normal life where we don’t wrap V in a bubble, allow her to eat at places other than home, and don’t have to be on edge about everything she puts in her mouth?

We are going back to the GI doctor later in the summer to discuss all this. Perhaps we can squeeze in another round of blood work just to rule out vacation cross-contamination. Aside from that, I’m at a loss.

As safe as it gets: samples that we got at the Gluten-Free Expo

 

Gluten-Free Expo Review

Disclosure: The Gluten-Free Media Group provided me with a complimentary admission to Gluten-Free Expo. All opinions are my own.

Gluten-Free expo was amazing. So many different products to explore! I was quite familiar with some products and approached those vendors as a true fangirl. And there were many more that were either new to me or that I have not had a chance to sample in the past.

All the swag! All the vendors!

Without further ado, I present to you some of my favorites.

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Everything by BFree. Like, everything. Breads, bagels, pita bread (yes, GF pita bread exists), breadsticks – everything is so good! I’ve heard of the brand before but this was my first time sampling it. A+

 

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These things are like crack. Seriously, you can’t eat just one. Very tasty and make great appetizers/party food.

 

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So many yummy things by this company that was completely new to me. See that chocolate cake mix? Tried it. Tastes amazing.

 

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So Delicious is so delicious. Also so blurry, sorry. Why yogurt, you ask? Isn’t yogurt normally GF anyway? Well, yes. I loved this for my own selfish reason. In my early twenties I developed mild lactose tolerance. A few years ago it got worse. Thank goodness I can still have cheese and most processed dairy products, as well as just a little bit of milk/cream. But I had to say good bye to yogurts and ice cream altogether, because doubling over in pain is so not worth it. So Delicious makes yummy coconut milk based yogurts and ice-creams. Trust me, I tried many and it’s not that easy to pull it off.

 

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Using the swag I brought back, I assembled V’s lunch later that day: a sandwich with BFree bread roll, So Delicious yogurt, and sun butter.

 

The following day I decided to bring V along. It felt great to be able to tell her that she could eat everything. How often does that happen? Almost never.

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Some of V’s favorites were Sun Butter and Milton’s chips. Yum!

So it’s lovely when everything is GF and I could say yes to everything. Except that stupid diabetes thing that did not agree with all of the sampling V had. We tried to estimate carbs best we could but ended up severely underestimating.

 

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Oops! We fixed it, using mainly insulin. For bonus points tell me at what time we arrived to the Expo? How were you able to tell?

 

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V was excited to assemble her lunch for the following day, using some of her favorite products.

 

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Last but not least, we got to try Keli’s Sauces. Sweet N Sour sauce was hands-down favorite. Not only is it delicious, it’s also pretty low in carbs, at 5 g per 1 TBS. V dips everything into it. It’s taken an honorable place alongside ketchup and it’s a place hard-earned.

I can’t wait to go to the Expo next year and if I’m lucky I’ll make it to other Expos. I highly recommend you do the same. If you go, I have a pro tip for you: go hungry or else you won’t be able to get through even a fraction of samples. Also,  you may not need another meal that day. Or ever.

In Diabetes Hacks We Trust

This was supposed to be another uneventful dinner at our local eatery, just me and my girl. As we sat down, V told me she felt low. Two things are noteworthy: 1) she’s just getting over a cold and her numbers have been crazy high past couple of days, but trending much better today, which actually made her BG more unpredictable, and 2) her Dexcom has been acting out and showing ??? or out of range most of the day.

She tested and her BG was 56. OK, no biggie, we are at a restaurant anyway. She asked for regular soda but I told her no, she would only be able to have a few sips anyway. We settled on one glucose tab to bring BG up just enough to be able to bolus for dinner, and she ordered a diet soda. Miraculously, at the same time Dexcom came back to life and started alarming us of the low. Yeah, thanks buddy, tell me something I don’t know, I told it. But I should not have been so short with it because of what happened next.

V guzzled down her soda, we ordered the food and she re-tested. 96 – BINGO. She pre-bolused for the food and got a soda refill while we waited for food to come out. About ten minutes later I noticed that Dexcom was showing BG of 110 and going up. How could BG have gone up that much already and still going up? One glucose tab was not enough to do this. If anything, since she gave herself some insulin but had not consumed any carbs, I’d expect her to be trending down. And then a suspicion hit me: did they refill her glass with REGULAR soda? Soda full of sugar? Because it would explain everything.

V drank just a bit of her refill, thankfully. She asked me to taste it. I can’t tell a difference between regular and diet! But then in a flash I remember reading about a diabetes hack that involved testing sugar in soda with a glucose meter. Instead of blood you put a drop of soda on the test strip. Regular soda will yield a high number. Diet soda will yield a LO reading or a meter error.

I whipped out V’s meter, fired it up and put the strip in a drop of soda. Aaaaaannnnd….Drumroll….

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OMG. She was drinking regular soda indeed. If we did not notice an upward trend and test the soda, this would have been V’s BG in an hour or so, and it would have been a monster to deal with.

I gave her a generous dose of extra insulin and we asked for a different glass of diet soda, complete with a clean straw. You bet I tested it when it came out. Meter error message confirmed it was diet. Whew. We carried on with dinner, keeping an eye on BG trends all the while. Afterwards we went for a nice long walk with the dogs. BG maxed out at 250. We can live with that!

Whoever came up with this hack, I can’t thank you enough.

 

Sidekick

When V was little she was a rather picky eater. However, as she grew older, she became more open to trying different foods. By the time she was seven, she was unrecognizable. She approached food with open curiosity and willingness to try new and different things. Dining out with her became lots of fun. We discovered that we shared many likes and dislikes, save for our differences of opinion on cilantro and mushrooms. She and I ventured into exploring new restaurants and new foods together. We would order a couple of things from the menu and share them. V became my dining-out sidekick.

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Diagnosis of diabetes a month after her 8th birthday, followed by celiac diagnosis two months afterwards, changed everything abruptly. In the beginning, we briefly halted eating out as we were still adjusting to carb counting and insulin administration. Then we found ourselves restricted to a handful of restaurants that had nutrition facts menus because we needed to have an accurate carb count of V’s meals. Planning and restrictions became the norm; spontaneity was no longer possible. We could not just go out and find a place to eat when it was time. As we transitioned to a gluten-free diet, our choices became even more limited. Now we needed nutrition facts AND a gluten-free menu, and an assurance that the restaurant was following at least basic precautions to prevent cross-contamination. We found ourselves eating at boring chain restaurants a lot, even though most of their gluten-free options were limited and rather unexciting. I would still try to order something new and fun from the menu but often it was not GF so V would not be able to try it. She felt disappointed and I felt really sad for her. Also, I really missed my sidekick, my partner in crime, my fellow food explorer.

As time went on and we became more skilled at diabetes and celiac management, we started to break out of the chains, pun intended. Fortunately we live in a city with an abundance of restaurants providing gluten-free options. We got more confident at SWAGing (scientific will-ass guess) carb counts, so we felt more comfortable dining in restaurants without nutrition facts, as long as we were reasonably assured of safety of gluten-free foods. More and more often I found myself trying things from the GF menu. Sometimes it was out of consideration for V; other times it was out of plain curiosity. How was her GF food? Did it taste good? Could you even tell a difference?

And then an unexpected thing started to happen. I began developing a taste for GF foods. It may have started with the In-n-Out, when I tried lettuce wrapped burger for the first time and decided that it was the best thing ever. 

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Or maybe it was the GF cinnamon roll pancakes at our favorite little restaurant? They were to die for and tasted way better than regular pancakes.

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Armed with the power of the internet, Find Me Gluten Free phone app, and newfound determination to discover any and all GF dining gems that our city has to offer, we began exploring in full force. Gluten free food can be good and exciting! Who would have guessed? Bread is overrated. Gluten-free pizza crust is bees knees. Gluten-free pasta can taste just as good as regular pasta. Ethnic foods? No problem. We found Italian, Mediterranean, Chinese, Thai and Mexican restaurants with impressive GF options, to name a few.

Nowadays, when we do out to eat, I often choose to order from a GF menu. V and I sit together, peruse the GF menu, order a few things and share. It is almost just like the “good old times”, when she was my sidekick. Except now I am her sidekick. I am her partner in crime and exploration of the great big gluten-free world out there. I follow her rules and restrictions. I have to be that annoying customer and ask about cross-contamination precautions. Together we SWAG the carbs. We still have to plan ahead and our choices are definitely limited compared to the regular menu, but I would not want to have it any other way.

Goofing off and exploring gluten-free dining in Denver International Airport

Goofing off and exploring gluten-free dining in Denver International Airport

Gluten-free and absolutely delicious!

Gluten-free and absolutely delicious!

Diabetes Encounter in the Wild

We are standing in line at our local BBQ joint, figuring out how many platters of ribs we should order to satisfy the gang and how many gazillion carbs to bolus V for. I pull out her Dexcom that displays a perfect 100. “Look at what we are about to ruin!” – I announce to my family.

“Hey!” I turn around and a stranger right behind us in line is waiving his Dexcom at us! His is showing 99 and going up.

It’s amazing how upon encountering another fellow T1 there is this instant bond. We are in it together. We speak the same language. We talk about the awesomeness that is Dexcom. V shows him off her new Medical ID bracelet and the guy pulls out his Medical ID necklace to show V. He tells her how they are twins, given that they are only 1 point apart. We wonder how many carbs we have to bolus for. (Gazillion, we all agree.) My hubby remarks how he’s never seen another T1 without a bag full of supplies. “I got it all right here!” – the guy’s partner chimes in, pointing to her purse. The guy talks a little bit about living with T1 for 36 years, how he has been living well with it, and how he prefers to stay old school with the shots and no pump.

For a few brief minutes, until it’s our turn to order the food and move on, we are family. I really love these random diabetes encounters. What are the odd that in a big restaurant in a big city a random person behind you also has T1D? And that they have nearly identical reading on their Dexcom? Maybe it only makes sense if you are living this T1D life, but it’s these little random things that put a smile on my face. And it totally makes me feel like this:

Image credit: yadadarcyyada.com

Image credit: yadadarcyyada.com

We went on a little vacation…

…and nothing bad happened!

OK, so maybe going away for 2 days does not even count for regular people. But for us, T1D and gluten-free people, going away for two days takes as much preparation as going away for two weeks. Besides, we were going up to the mountains, where they most likely do not have a 24-hr pharmacy and we can’t easily get our hands on any needed supplies. You never know what could happen, T1D has a sick sense of humor and you have to be prepared for everything to go wrong at the most inopportune time. And since I still have a little bit of residual trauma from not packing properly, I wanted to be extra careful.

I packed diabetes stuff first. I made my list, I checked it twice, I packed the box, I checked it, I had hubby check it, to make sure we did not forget anything important. So here you go: extra insulin, extra strips, syringes for just in case, extra pods, extra Dexcom sensor, a small food scale and amazing collapsible measuring cups (I love those things so, so much!), tape, extra wipes, extra fast-acting sugars, and Zofran in case a stomach flu or food poisoning strikes. I’m tired from just writing all this out.

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Pack ALL the supplies!

After diabetes is taken care of, comes the Celiac part. We always have to bring some food with us. Will we be able to find gluten-free groceries? Most likely yes, but we need to bring with us at least some basic necessities. I packed cereal, bread and GF granola bars. Then I got on Find Me Gluten Free website, researched restaurants in the area, and then called them when we were on our way to confirm that they indeed served gluten-free options.

To be honest with you, I hate going through all this prep. Packing sucks as is, but this takes it to the next level of suckage. It’s not hard but it is tedious, time-consuming, and rather exhausting. Spontaneity is a little scary when going on a trip. We have to have supplies. We can’t just stop at any restaurant to eat. So we learn to always be prepared and then we can be spontaneous within the confines or our limitations.

And that is exactly what happened once we hit the road. We had plenty of snacks if anyone got hungry. We picked out a few possible restaurants we could eat at but decided last minute where and when to dine out. We could comfortably say yes to all activities knowing that we had everything we needed. Sure,V had some highs and lows, but nothing was out of ordinary. There were no pod failures. Dexcom kept working despite pushing 2 weeks. All devices remained stuck to skin, thanks to extra tape we brought. All lows were easily treated with fast acting sugars we brought with us. And so we went hiking and exploring, dined out, made food at the condo, swam in the pool, chilled out, spent time with friends, took naps, and enjoyed a change of pace and scenery. And it was wonderful!

Enjoying gluten-free crepes

Enjoying gluten-free crepes

Hiking

Hiking

Second Diaversary

Diaversary: an anniversary of diabetes diagnosis. We need this anniversary like we need a hole in our heads. Yet, here it is, like it or not, so we may as well mark the occasion with all the fanfare we can muster.

Two years ago, May 22, 2013, our life was suddenly turned upside down. We went to a scheduled well-child appointment, oblivious to all signs and symptoms of T1D, and ended up in the hospital. I think that counts as a bad day, right?

Things were crazy and new and overwhelming at first. Two years later we are old hats at beating diabetes into submission. Granted, we don’t always succeed, but we are not doing too shabby, if I may say so myself.

This morning I made a lame attempt at whipped cream art to kick off the festivities.

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It’s supposed to look like “No T1D” sign. Instead it looks more like abstract art. OK, you can stop laughing now. Hey, in my defense, this was before I had my coffee. V appreciated the effort and I will keep my day job.

Then I dared V to do this stint at school: stick a syringe into her gluten-free lasagna entree and sing “Diabetes you suck” to the tune of Happy Birthday song. She accepted the challenge. Our wonderful school nurse documented the occasion.

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She also gave V this lovely card:

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Our school nurse is the best, hands down!

And then for dinner we headed to one of our favorite restaurants so that V could feast on scrumptious gluten-free cinnamon roll pancakes. With bacon, of course (not pictured.)

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This is definitely bolus-worthy. How many carbs did I guess for this carby, sugary beauty? 100! Gave 10 extra for a glass of milk, resulting in a largest single bolus in two years.

Best part? We were totally prepared to battle high BG. After we got home V played outside with her brother and next-door neighbor and did some running around. Two and a half hours after dinner she tested: 111! Who knows how the night will go, it’s quite possible that the high will catch up with us, but at least for one brief moment diabetes gods smiled at us and gave us a reprieve. We’ll take any reprieve we can get.

F**k off diabeetus! We live well and we will continue to beat you into submission one bolus at a time.