Let’s Talk about Gluten

Gluten. (from Latin gluten, “glue“) is a protein composite found in wheat and related grains, including barley and rye. (Wikipedia)

It’s a word you hear a lot lately.  While there are definitely a lot of people with legitimate celiac disease or gluten sensitivities out there, you didn’t hear a lot about gluten until a gluten free diet became the world’s new fab fad diet within the past year or so  Now it seems like EVERYONE is worried about gluten.

My husband has (mostly) avoided gluten for several years now, to ease some pretty major digestive issues that went completely undiagnosed by his (rather stupid, in my opinion) gastroenterologist.

So when I started experiencing my own digestive issues with a high frequency, my first thought was ‘gluten’.  But then I felt silly…..after all, I reasoned, how likely was it that we BOTH have issues with gluten?  Not too likely, if you believe the statistics.

And yet….I have Type 1 diabetes.  Which means my chances of having celiac disease are at least TEN TIMES higher than someone of the ‘average’ population. (Auto-immune conditions tend to come in clusters, lucky us…)  In fact, I was tested for celiac disease 22.5 years ago, about a half a year before my Type 1 diagnosis (by the way, yesterday was 22 years with Type 1 for me – happy diaversary to me!) and my results were ‘inconclusive’. My parents were told to put me on a GF diet – and they did, for 6 months.  Back in the early 90s this was no small feat for a child who didn’t like most veggies and fruits, because there weren’t a lot of GF alternatives out there for my favorite processed foods. My mom said my diet went down to about 6 staple foods that I would eat all the time – and that was it (well, and my Flintstones multivitamins).  But my problems with nausea and weight loss and fatigue didn’t dissipate.  When I was diagnosed with Type 1 the doctors said ‘oops’ and told my parents that my symptoms had been due to the burgeoning Type 1….that I didn’t have celiac disease at all.

And so I went back to eating a gluten-filled diet.

Through the years I’d noticed that I seemed to have ‘digestive upsets’ more often than my family or friends …. but I attributed that to a bad immune system, poor control of my diabetes, minor food poisoning (over and over and over – how many times can you get food poisoning?!), etc. Never once did I think that it might be due to something I was consistently eating.

As I said, I recently (in the past few months) have experienced some major digestive issues with regularity.  I’ve had to call in to work on a few occasions and I missed school once back in early May. The symptoms would build up over several days, then get really bad for a day, then dissipate over a few days……only for the cycle to start again.

Two weeks ago I’d decided I’d finally had enough and cut out gluten completely.  This wasn’t the hugest jump for me to make – I was able to ‘copy’ many things from my husband’s diet and find alternatives for things I felt I still absolutely wanted to eat. The initial thought was that I’d do this for 3-4 weeks, see how I feel, and then reintroduce gluten to see if any improvement was coincidental or not. At that point if I felt it wasn’t coincidence I’d request re-testing for celiac disease.

My digestive issues haven’t resolved 100%…….but I’m about 70% better.  And as if that’s not reason enough to keep going with this……..

I have strong reason to believe that gluten has been causing insulin resistance in me.  Prior to cutting out gluten my Dexcom data shows that I was averaging a BG of about 137 and stayed between 70 and 150 about 60% of the time. I often had excursions over 180 after meals, no matter when I bolused.

Since cutting out gluten (and note: I am eating the SAME number of carbs per day!) I’ve decreased my meal-time insulin by about 9 units per day and I need to continue to decrease my I:C ratios because I continue to have lows after my meal boluses.  I am averaging a BG of 106 now, and I’m staying between 70 and 150 for 86% of the time.  Most of the time that I’m outside that range I’m BELOW it, not ABOVE it as I used to be. I’ve changed nothing else in my life the last two weeks.  I can only attribute this sudden increase in insulin sensitivity to the elimination of gluten from my diet.

I think that, regardless of digestive issues, I’m going to keep eating gluten free. Anything that helps me attain better control of my diabetes while simultaneously reducing insulin intake is a keeper, in my book.

An Update On My Eyeballs

Today I had my 6-month checkup with my retina specialist.  I’ve been fearful the past several months that my retinopathy was returning and/or worsening.

See, I’ve been having a lot of hemorrhages.  And all in my central vision.  It’s annoying and scary, you know?

I hadn’t gone in sooner than my regularly scheduled appointment because I’ve already been told a million times that more laser treatments are NOT an option for me.

Today I got a much better explanation of exactly what is happening in my eyes.  Some of it is GREAT news, some of it isn’t so great.

Let’s start with the GREAT news: The doctor sees absolutely no signs of active retinopathy, at any stage, in either of my eyes. Essentially, I am officially retinopathy free!

The not-so-great news: I am experiencing hemorrhaging of a different sort. I don’t have diseased or proliferating blood vessels……..but I do have an insane amount of scar tissue (in my central vision) from the many, many, MANY laser treatments that were used between 2007 and 2009 to save me from blindness. This scar tissue is pulling at healthy blood vessels, and occasionally those healthy vessels rupture.  They heal quickly because they are not diseased, but when it happens it is majorly annoying and inconvenient.

My options are to either live with it or opt for another vitrectomy, to clear out some of the scar tissue.  I am opting, for now, to live with it.  When I had a vitrectomy on my other eye in 2009……it was horrible.  I went through weeks of having to wear an eyepatch, weeks of having to use numbing and antibiotic eye drops EVERY FOUR HOURS, and months of absolutely no vision in that eye whatsoever as the trauma to the eye was significant and took a long time to heal and ‘calm down’.  I’m not willing to go through that again knowing this surgery wouldn’t even be able to realistically take out all of the scar tissue, and thus the issue may persist anyway.

So…..yeah.  My eyeballs are healthy! But the treatment that saved my eyesight is now the cause of my occasional issues.

Dexcom G4 Platinum CGM – First Impressions

I began using my new Dexcom G4 system on Monday evening.  It’s been wonderful to have – and after only just over 36 hours with it, I can’t imagine not having it.

The first night it woke me up three times to alert me to lows – the first time was a false alarm, but the next two times I was in fact low.  I have my alerts set at 70, so I can get my lows fixed as soon as they happen (minus the few minutes lag that a Dexcom can have in comparison to blood glucose).

Look at that control! Total fluke!
Look at that control! Total fluke!

Last night it woke me up for a low and then, when I overcorrected for that low, it woke me several times for being high.

I have found the information it gives me to be highly valuable and overall I’m finding it to be fairly in line with my meter readings.

My only complaint so far is that sometimes, if I am skating around an alert-level number, this can set the alert off multiple times in a short period. Last night I hit 200, the alert went off – I acknowledged and dealt with it.  A few minutes later it read 198….then a few minutes later it read up at 202 again. And because I crossed that 200 mg/dl level again, the alert went off again.  I just wanted to sleep!!!!

I’ve been using the ‘Dexcom in a glass at night’ trick that I’ve seen around the DOC, in order to hear my alerts at night (I have my Dexcom set to ‘vibrate’) and it’s worked really well – I wake up right away.  Hopefully my husband doesn’t want to kill me or my Dexcom yet.

I tend to name my devices, because I often ‘talk’ to them (that sounds crazy…..it actually started as a way to refer to my insulin pump with my kindergarteners when I was teaching – hence, my Animas Ping was named ‘Frank’), so I’ve been thinking about what to call my Dexcom. I didn’t want to use ‘Dexie’ or ‘Dexter’ because I feel like every third person in the DOC uses those names. I just call my t:slim ‘Slim 2.0′ (because this one is a replacement pump for my original t:slim) and so in line with finding a name related to the product name I’ve decided to call my Dexcom ‘Dextah’.  It has a silent ‘t’ by the way (it’s said ‘Dex-sa’).  So for anyone who knows me IRL – if you hear me talking to ‘Dextah’, know that it is NOT an imaginary friend!

Dexcom G4

In less than a week I should be live with a Dexcom G4 system and I’m very excited!

I’ve experience a lot of lows lately that I have not been able to feel, and it’s starting to scare me.  I spoke to my endocrinologist about a week and a half ago and he agreed I’d be better off with a CGM. product-1_0

I found the ordering process quite simple – all of the ‘Getting Started’ forms are right on Dexcom’s website and you can easily download them and email them to customer service. My endocrinologist’s LPN filled in the medical necessity form and got in contact with a local representative of the company that she knows.

He worked with me to figure out what we could do with my insurance coverage and I made him promise we wouldn’t even consider Edgepark Medical (because I absolutely hate them and refuse to ever work with them again).  I got set up with Diabetes Specialty Center/Byram.  Dexcom forwarded all my information, including my RX, to them so all I had to do was give them the go ahead to ship the system!

It should arrive between Monday and Wednesday.

If anyone has any tips they think would be helpful for a first time Dexcom-er, I’d love to hear them!  I’m a little intimidated from seeing videos of sensor insertions, so any comforting comments are appreciated too, haha!

Review: Balancing Diabetes by Kerri Sparling

Kerri Sparling of Six Until Me has recently published her first book Balancing Diabetes: Conversations About Finding Happiness and Living Well. I purchased a copy last week and received it Friday.  I’ve since devoured it. (And highlighted a lot of it…..all the things I connect with, all the things I said ‘Yes! Me too!’ to…)

If you haven’t read it, you need to.  You will not regret it.Image

Kerri writes in a way that all PWD can relate to and understand, as she calls upon her own experiences, emotions, and thoughts.  But she doesn’t stop there – she gets the viewpoints of many other PWD as well.

What drew me in to the book initially is that we were the same age when we were diagnosed, neither of us really have memories of ‘life before diagnosis’.  But beyond that I found so many other things I could connect to; I often felt like I was reading my own story and my own thoughts.  

Kerri understands, intimately, what it is like to be diagnosed young, but she also does a wonderful job of connecting to PWD who were diagnosed later in life and spotlights their stories and experiences in her book just as much as she does the story of herself and others diagnosed young.

She gives practical advice on things such as handling diabetes at college/away from parental guidance for the first time, diabetes and relationships/love, diabetes and pregnancy, diabetes and exercise, fitting all kinds of D-tech into your life, etc.

It was a refreshing look at diabetes (especially Type 1) in general. I feel that so many books on diabetes are either very medical or very scientific and don’t give as much credit to the social-emotional aspects of diabetes and the ways in which diabetes realistically affects daily life. This book delivered on all those counts.

I will definitely be reading it again…but for now I’ve passed it off to my husband in the hopes that he will read it as well.

Miss Manners and the DOC

There has been a big hullabaloo in the DOC the past few days due to advice given to a diabetic traveler via an advice article written by “Miss Manners” (you can read it on this page).

Basically, she told a diabetic traveler that the polite thing to do when needing to test blood glucose on an airplane (or anywhere away from home) is to excuse yourself to the bathroom.

Now, I do not agree with this. No one in the DOC agrees with this. Bathrooms are gross and dirty. Diabetes already comes with a massive dose of attached stigma, and hiding away to manage it isn’t a good way to promote healthful habits. Also, in emergencies it’s just plain ridiculous to expect someone to search out a bathroom. Etc. etc. etc.

I understand the DOC’s outrage and the general desire to let “Miss Manners” know why her advice is ill-founded. Besides the comments on the original web page, there are now countless blogs from fellow bloggers calling out this woman on her advice.

Here is where my main issue with all of this lies….

“Miss Manners” is an elderly woman (look her up, her name is Judith Martin). She grew up in an era vastly different than the present. Ideas of manners and polite behavior were different. Chronic disease management wasn’t the same as it is now. Yes, what she said was ignorant. And kudos to those who let her know that in a respectful way. I have only seen a couple people who did.

Many comments and blogs told an elderly woman to go ‘f yourself’ or ‘suck it’. I don’t care how misguided someone is, I was taught to respect my elders. I am shocked and dismayed at how many in the DOC are expressing themselves and making us, as a community, appear. Frankly, now we all look like a bunch of highly defensive a-holes. How many would actually say ‘f you’ or something else highly derogatory to an elderly woman’s face? I am guessing few to none. But by being behind keyboards and computer screens, the filters come off.

We talk about advocacy. We talk about educating. Both are admirable goals in regards to what we need to do.

But let’s do it with class and poise.