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Pros and Cons of Going Gluten-Free. (and a brief lament about the smooshed banana)

It’s been about seven weeks on this “no way, gluten!” lifestyle, and I’m starting to find my footing.  But there are still many pros and cons to balance, so I’m listing them here.  That way, I can look back at this post in a few months and be all, “Pfffft.  Whiner.  You’re in the zone now.”

Here we go – PROS and CONS of Going Gluten-Free in ALL CAPS at times because that’s the only way my brain can operate this morning.

CON:  It’s a pain in the ass, doing this.  Reading food labels for carbohydrate content and grams of sugar in pursuit of better blood sugar control is second nature to me by this point.  After 28 years with type 1 diabetes, I’m comfortable with the carbs.  But trolling labels for that bright, shiny GF logo, or reading through each ingredient to ensure that I’m not inadvertently eating gluten is a new adventure, and one that I find very intrusive.

PRO:  As a result, weight management has been easier lately.  Which I guess is a plus but at the same time, I’m hungry, so I can’t call this a total pro.

CON:  I’m hungry.  (See above.)  All the time.  Mostly because I’m unsure of what to eat, and that insecurity leads me to eat the same things all the time.  Staples like hard boiled eggs, grilled chicken, spinach salad, yogurt, almonds, and every fruit I can get my paws on dominate my days.  Menu items like gluten-free pizza, butternut squash (done with GF ingredients), and chicken soup are being explored, but my natural inclination to be a lazy chef makes this sort of exploration tougher.

PRO:  Eating the same things all the time makes me very familiar with how they map out, blood sugar wise.  So I’m best able to pre-bolus with precision and my post-prandials aren’t gross.  This is boring as eff, but effective for diabetes management.

CON:  Low blood sugars have been really weird lately, especially the ones that follow a visit to the gym.  Before going gluten-free, I’d eat froast or some other glutened up snack to keep my blood sugar steady through cardio (yes, there are other options, but I can’t pretend to have chomped on kale during a run – that would be a big, fat lie and kale hates lies).  Now, I’m erring on the side of fruit and sometimes those sugars get in and out of my system too quickly to hold me for an entire workout.  I’m still figuring out what foods work best to deal with during- and post-exercise hypoglycemia.

PRO:  Glucolift Wildberry tabs are gluten-free.

CON:  Traveling is weird now, too, keeping gluten off my plate.  Airports are not designed for people with dietary needs or preferences, especially little airports like the one I frequent here in Providence.  Finding foods that are gluten-free while on the road is tough, with little exception.  Once I land somewhere, I’m fine, but while in transit, I keep my bag stashed with snacks.

PRO:  I’m learning a lot about what foods travel well.  These gf bars are among my favorites to toss in a backpack, and while they are not as healthy as something fresh, they can stand up to traveling with me and they are more filling than the Southwest pretzels that I can’t eat.

CON:  Bananas do not keep well in backpacks.  They turn brown quickly and often end up smeared on … oh, let’s say the lid of a laptop.

PRO:  I wash my backpack more often than I ever have before, and now it permanently smells like dryer sheets.  Which is a nice contrast to my computer, which smells permanently like bananas now.

CON:  I hate being “that girl.”  The one who asks waitstaff if certain menu options can be made without gluten.  The one who reads labels before taking a bite of anything.  The one who might be mistakenly marked as someone following a “trend diet” instead of someone who is unhappily-but-smartly following through on feedback from her body.  As good as I feel off gluten, I wish I could still eat the stuff and not make waves.

PRO:  I’m learning not to care about feeling slightly embarrassed because DUDE I feel so much better.

“You’re more … you.  The change between then and now is significant,” Chris said the other day.

He’s right.  My mood/disposition/health/everything since kicking gluten out of my diet has been ten steps in the best direction.  All of the non-celiac gluten sensitivity symptoms are gone.  The “head fog” where I would forget what I was doing or what I was about to say has receded.  The numbness and tingling in my hands and wrists is gone.  The ache in my hip joints after running is gone.  I don’t want to spend the afternoon taking a nap on the couch.  My energy is back.  My face is less puffy.  I can chase Birdy without feeling like my feet are in lead boots.  It took months to tune in to how poorly I felt, but now that I’m feeling better, the change is undeniable.

As much as I miss being more carefree about food, a gluten-free diet is the best fit for me.  And after almost three decades of type 1 diabetes, what’s one more food constraint?  So long as coffee and wine remain in the mix, I’m good.

Show Me Your Pump … Or Not.

During a presentation in Duluth, MN last week, I was talking about my family and I used a photo in the slide deck that I’ve used many times before.  It’s one of Birdy, Chris, and I and we’re at some park on a sunny fall day, enjoying the sunshine.

“This is my family.  And right there – RIGHT THERE – is my diabetes.  Can’t miss it.  It’s just THERE and it’s always there.  I love this photo because it shows off my wonderful husband and the daughter I went to the ends of the earth and back for, and I couldn’t be prouder and more in love with my family.  But then there’s that reminder again, the reminder of diabetes and the intrusion it makes into my life.  Like I said, I love this photo.  But I want to Photoshop the hell out of that one part.”

Diabetes has not been a smooth ride for the last few weeks.  Unusual moments like a skunked bottle of insulin and two Dexcom sensors that rolled off my skin way too early, a few low blood sugars that fucked with my happiness a little bit … all stuff that sometimes happens, but lately it feels like it’s always something.

A relentless itchy patch left behind by a Dexcom sensor from weeks ago on my right thigh that, in the middle of the night itches so badly that I scrape at it while I’m sleeping, only to wake up and find blood underneath my fingernails sums up how I’ve felt lately.  (And holy run-on sentence!)  It’s not the actual diabetes moments – the actual low blood sugar, the actual itchy sensor, the actual hour lost to reinforcing to my insurance company that yes, insulin is necessary and should be covered – but the cumulative experience that’s a little more than meh of late.  I’m grateful for access, but having access gives me a perspective that allows for being wildly grumpy at times.  I’m worn out on the self-care crap.  I don’t have any choice but to continue to make the best efforts I can to take care of myself.  Diabetes without self-care becomes chaotic quickly, for me.

There’s no “but,” to that, no caveat.  There’s just a desire to take a sponge and wipe away all the traces of diabetes for just a few hours.

… that, and our coffee pot cracked this morning, so that’s probably not helping my mood.

 

Urgency – #Vote4DM and #DOCasksFDA.

Today is the last day to participate in the #DOCasksFDA survey.  The link is HERE and you can just CLICK ON THIS LINK and I’ll stop using the caps lock key.

Also, if you’d like to contribute your voice and share your dream for the future of diabetes, do it.  Do it via video, if you’re so inclined, like so many others have done.

Also, the Strip Safely team is bringing about a new advocacy initiative, using Twitter to target our legislators.  As the campaign tagline says, “We voted them into office.  Tell them to #Vote4DM.”  There are three diabetes bills that are currently in play up on Capitol Hill, and by visiting the Twitter page for Strip Safely, you’ll see some customized messaging all ready to go for your specific representatives.  For more information on the bills on tap and how you can raise your voice, CLICK HERE (damn it – that all caps button is my best friend these days).

Thank you, as always, for being such a crucial part of the diabetes community.  This whole thing would fall flat without you.  (SERIOUSLY.)

#DOCasksFDA – Your Feedback is Needed, DOC!

THIS IS THE LINK TO THE SURVEYRead below for more information on the virtual discussion between the diabetes community and the FDA, and how your input will shape that discussion, and potentially our future.

“On November 3 from 1pm-4pm EDT, the Food and Drug Administration (FDA) and the diabetes community will host an unprecedented event to discuss unmet needs in diabetes. As a community, our job is to present the numerous challenges we as patients face each day, and we need your opinions to be a part of this discussion! Please fill out this short survey to share your thoughts on what’s important to you when it comes to living with diabetes. Your feedback will go directly to FDA and help influence the conversation on November 3.

Please answer the questions that follow as honestly as you can. Your answers could affect the way the FDA perceives unmet needs in diabetes, and ultimately, how it reviews the risks and benefits of new drugs and devices.”

THIS IS THE LINK TO THE SURVEY AGAIN.  IT IS IN ALL CAPS BECAUSE IT IS IMPORTANT AND YOU ARE IMPORTANT AND YOUR OPINIONS ARE IMPORTANT.  As a community, we need to raise our voices.  Please show the FDA that we are many, we are empowered, and we are loud.

Link coming soon so that you can register for the discussion, but in the meantime, please fill out the survey and share it with your DOC friends.  And thanks!!

When Good Insulin Goes BAD.

Ninety percent of the time, my high blood sugar has an identifiable reason, and there’s a cluster of common causes.  Did I under-estimate the carbs in a snack and therefore under-bolus?  Did I over-treat a low blood sugar?  Did I eat without bolusing at all (it happens)?  Is there a lot of stress floating around that I’m responding to?

Most of the time, those questions cover the why.  Once in a while, my highs are for rogue reasons, like an air bubble in my pump tubing.  Or when I eat something carb-heavy right after an insulin pump site change (it’s like that first bolus doesn’t “catch” somehow).  Or I forgot to reconnect my pump.  Or if the cat bites through my pump tubing.

But rarely, if ever, is one of my high blood sugars the result of bad insulin.

Except it totally happened last week, when two days of bullshit high numbers had me mitigating every possible variable … other than swapping out the insulin itself.  (And clearly I’m stubborn and/or in denial about the quality of my insulin’s influence on my blood sugars?)  I rage-bolused.  I exercised.  I low-carbed the eff out of an entire day.  I did a site change at midnight to take a bite out of the highs.  Nothing.  The downward-sloping arrow on my Dexcom graph had gone on hiatus.

(Always a punched-in-the-gut feeling to see the word HIGH on a Dexcom graph, accompanied by an up arrow.)

But ditching the bottle of insulin entirely and swapping in a new Humalog vial?  That did the trick in a big way.  For once, it was the insulin.  Next time, it will surely be the cat.

Opening a Can of Gluten-Free Pumpkin Whoop Ass.

I’m five-ish weeks into a gluten-free life, and the waah waaaaaah is starting to wear off.  (I can’t pretend to be above the waaah.  Diabetes is such a food-anchored disease, and an additional restriction acts as an extra fun vacuum, sucking the fun out of meals even more.)  But I’m rounding a corner with this new (and admittedly self-imposed, but with good reason) restriction, and it’s time to start branching out.

My mother-in-law is an excellent cook and she gifted America’s Test Kitchen:  How Can It Be Gluten-Free cookbook to Chris and I after learning about our gluten-free leanings.  For a few weeks, I avoided opening it because I was feeling crummy about the transition, but this morning Birdy and I decided to tackle the gluten-free pumpkin bread.

I don’t know what copyright infringements exist when it comes to recipes, so I’m opting to not post the recipe here (I’m scared of the Test Kitchen people), but I will confirm that the bread, although a little bit of a pain in the butt to prepare, was delicious.  IS delicious, because it’s still sitting out on the kitchen counter cooling and the whole house smells terrific.

The bread recipe only called for 1/2 a cup of pumpkin, so we had the majority of a can of pumpkin left over, all nice-smelling and tempting us to make something else.

“COOKIES!!!” yelled Birdy, which is her answer to just about everything.  (A close second to “Why?”)

“Okay, let’s hunt down some cookies that have pumpkin in them,” I replied.

“Why?”

“Because … you just said cookies?”

“Oh yeah.  I forgot.”

Moving on.

We found a gluten-free pumpkin sandwich cookie via Google with these puffy, awesome pumpkin cookies and a cream cheese filling, so have at it we did.  Navigating the gluten-free curve has been interesting, though, because I am learning how many random things have gluten in them.  Like vanilla.  The vanilla in our cupboard is imitation (don’t hate) and according to Chef Google probably contains gluten (and also anal secretions from beavers WTF), so we used the makeshift substitution at the bottom of the recipe of 1/2 teaspoon ground cinnamon plus 1/4 teaspoon ground ginger, 1/4 teaspoon ground nutmeg and 1/8 teaspoon ground cloves.

The end result, though visually clumsy, was also delicious.

It’s easier for me to avoid desserts most of the time because eating less junk makes the most sense for me, diabetes-wise.  But for those moments when I’d like to enjoy something sweet, I’m glad there are options that won’t wreck havoc on my body.  Gluten-free doesn’t have to be gross, and I’m slowly learning that fact.

Guest Post: No Child Should Die of Diabetes.

Veerle Vanhuyse is off and running … literally.  Verlee lives with type 1 diabetes and is running the NYC Marathon in a few weeks, aiming to raise awareness and funds for the IDF’s Life for a Child program.  Today, I’m proud to be hosting a post from Veerle about her marathon goals!

*   *   *

A quarter of a century it’s been already but it still feels like yesterday. About to turn 16 and counting the days to leave for France with a bunch of teenagers to learn the language. I hadn’t been feeling well over the last few weeks and my trip to France became a trip to the hospital. Diabetes! I took my very first shot of insulin on my birthday. Sweet sixteen indeed!

In the beginning, I did really bad, didn’t take care of it at all. Only in my late twenties(!), I took diabetes more seriously and got my a1C’s from 9+ to 5%.

Eighteen years and a child later, I started running. And in eight years time I went from 100 meter and being exhausted (I’m not kidding), to 5K, 10K, half a marathon and finally the full monster; Berlin Marathon 2012.

That sad girl back in 1987 would’ve never guessed she would be doing what I’m about to do in one month:  Being at the start of the mother of all marathons, New York City 2014!

Needless to say, I am very excited about this upcoming event. But make no mistake, there’s no such thing as knowing exactly how to anticipate with the sugars before a long run, or any run for that matter. Every workout is different, depending on so many factors all diabetics deal with every single day.

Three weeks before the Berlin marathon, I suddenly realized I should grab the opportunity to raise money for diabetes. And I did. 1.700 euro went to research at the University Hospital in Leuven, Belgium. But this time I wanted to do something more specific. It didn’t take me long to find a new great goal. Surfing the web for a few hours I found a wonderful initiative called ‘Life for a Child’ supported by the International Diabetes Federation. I read about Dr. Marguerite De Clerck, a Belgian nun who spent the past 55 years treating children with diabetes in the Democratic Republic of Congo.

It instantly hit me! THIS was a project I immediately believed in and I wanted to make a difference for.  In the end my goal is comparable to the wonderful Spare a Rose, Save a Child campaign: Provide children and youth in developing countries the basic care they need to stay alive with diabetes.

So far, I raised 2.500 euro, and I’m working really hard to at least double this amount.  I’m hoping to help families in Kinshasa keeping their loved ones alive.

It is a clear message: No child should die of diabetes.

*   *   *

I asked Veerle to provide a bio, and the one she sent to me in first person language was too laced with passion to edit in any way.

Here’s Veerle, according to Verlee:  “There’s the Belgian, so called ‘outgoing’ 43 year old, who talks a lot and who’s always in for a joke. And there is the T1 diabetic since 27 years, who can be really sad about the battle she has to fight against the disease every single day. “She deals with it really well,” people – even close to me – would say. They have no idea. One way to “deal with it” is running ! A lot! And in less than 4 weeks, I’ll be living my dream: NYC marathon ! Last race, because there’s also arthritis in my foot now. With this last 42,195km, I’ll be raising money for Life for a Child, to provide children in Kinshasa with the necessary supplies, proper care, and some decent education they need so badly. I am extremely passionate about it, and I want to scream as hard as I can: Please people, read my website and find it in your heart to donate, donate, donate!!!”

To donate to Veerle’s efforts, please visit this link on her websiteThanks for raising awareness, Veerle!

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