I'll Still Use the Nima Sensor

There were new reports today from Gluten Free Watchdog regarding the Nima gluten sensor. Third party testing released from Nima showed that the gluten sensor is wrong much of the time.

There were false positives (times when the sensor showed gluten, when it was actually at 20 parts per million or less) about 8% of the time. This is an issue because you may think that something isn't safe to eat, when in fact it is. Twenty parts per million (or 20 ppm) or less is safe, per the FDA and medical research, for a person with Celiac disease.

There were false negatives (times when the test showed negative, when in fact it wasn't) about 20% of the time, with nearing 100% accuracy only when the levels of gluten neared 40 ppm. This is an issue because you may think something is safe, when in fact it isn't.

These things tend to scare people. In fact, they scare me a bit, but I still have the Nima sensor, and I plan to continue to use it. Here's why:

I feel like this technology is promising. It's a start. It isn't perfect. Even if it WAS perfect, 100% of the time, the piece of food you test could be fine, but three inches over on your plate could be something that was cross contaminated.

My hope is that this technology will improve. That it will inspire other companies to come up with similar (better, faster, cheaper) products. My hope is that it will one day be considered a medical device, complete with FDA approval and that insurance will cover it. 

For me, having a sensor that gets it 

right some of the time is better than 

not knowing all of the time.

I'm still fairly new to the Celiac game. It's scary, and my tests keep coming back in ways I'm not thrilled with (a.k.a. I feel like I'm not getting better). Add to that the fact that I have zero symptoms when I ingest gluten, and I'm flying blind. 

For me, having a sensor that gets it right some of the time is better than not knowing all of the time.  So for now, I'll continue to pay out of pocket for this technology. I'll take the risk. It's worth it for me.

Everything starts somewhere. With diabetes, insulin pumps used to be the size of a backpack. Blood sugar meters were large, inaccurate and took forever to come back with a reading. Constant glucose  monitoring systems were inaccurate, and painful. Technology improved. I want to believe that will happen with Celiac technology as well.

Lost Sleep

The thing I hate more than anything is loosing sleep. I'm a sleeper. I always have been. I took naps way longer than most kids and I had to be dragged out of bed most mornings.

I like to get my 8 hours plus. I can also sleep almost anywhere.

Put me in a car? I'm asleep in 10 minutes or so. A plane? I'm usually asleep before they get to drink orders.

This is not unusual for me. The only time I ever worried about sleep was when I was not making it through the day at work, without going to my car to take a nap. While that's another story, it lead to my Celiac diagnosis, and I'm back to just regularly sleeping a lot.

Diabetes is a sleep stealer. A full on stealer of sleep. With current diabetes technology, the wonderful world of Constant Glucose Monitoring, we are give the security of closer diabetes monitoring. We are given the benefits of knowing what out blood sugar is all of the time. It is a beautiful and wonderful technology, but it also has it's downsides.

There are alarms. All the time. You're too high, you're too low. You're rising quickly or falling quickly. Your sensor has lost communication with your device. During the day, these are great. You hear it, you give a quick adjustment and hopefully fall back into your range again. During the night, these alarms can be lifesaving. An alarm that wakes me from a low, could potentially save me from hospitalization or even death.

But these alarms, when they wake me at night, also keep me awake. Sometimes they go off multiple times during the night, making sleep broken and interrupted. Other times, it wakes me and I can't go back to sleep. This is what has been happening more often lately.

I miss sleep. I miss uninterrupted sleep. I miss it so much. It makes my days hard sometimes. It makes my nights restless. Diabetes is a sleep stealer.

My options are limited. I could turn off my sensor at night, but lose the safety of knowing if I drop too low or go too high. It's something that I've considered. But I'm not sure I'm ready to do this for now.

Thankfully, technology is improving. There are options out there to help regulate your blood sugar levels, without as much human decision making.  But until I get that technology, uninterrupted sleep is a nice idea, but not always possible.

Technology is Scary: A Skeptic Changes Her Mind

I was diagnosed with diabetes in 1986, a few months before my fifth birthday. I have very, very few memories of my life before diabetes. It’s just always BEEN. Diabetes has been a part of me so much, that I’m not entirely sure who’d I’d be without it. I’m throwing a wild guess out there that I’d have more money, less stress and get more sleep, among other things. But, it’s nothing that I can’t deal with.

When I was first diagnosed with diabetes, I was on ONE injection per day of the (now) antiquated NPH insulin. My doctors thought that a 12.3 a1c was “in control” enough to take my tonsils out 8 months after I was diagnosed. Life was different. Diabetes care was different.

Sometime after that (I’m not sure on how long, and my mother is a little foggy on the details) I went to two injections per day of NPH and Regular insulin. I stayed on that regimen, along with a strict eating schedule and fights with my mother when I was (as kids often are) NOT hungry and didn’t want to eat what was on my plate.

When I was in high school was the first time that I really heard of an insulin pump. They were just really starting to get “popular.” I didn’t know much about them. Other than that I did NOT want a needle in me all the time (I’m not sure if that was the case at the time, or if that’s just what I thought because I was uninformed) and I didn’t like the ideas of being attached to something all the time.

For years I resisted an insulin pump. During those years I also dealt with losing insurance, getting it back, losing it again, and getting it back again, so my diabetes care was spotty and I didn’t see and endocrinologist regularly. But I did meet a lady that I went to college with who also had diabetes. We had many classes together because we had the same major and ended up graduating within a semester of each other. She was a “non-traditional” student, meaning that she was older, married, had kids and did not live anywhere near campus.

But despite those differences we became friends. I got along with her better than I did many of my peers because I was also working my way through school (though it was only me I had to worry about) and had a semi more grown up view of life than many of the people my age. I say semi because I was still very much a college student. LOL.  

One thing that this lady had was an insulin pump. I’d never really seen one before. She told me how much she loved her insulin pump. She showed me how hers worked. She was the first person that I ever knew that made me think “I might actually like to have an insulin pump.” That was the first time I didn’t think an insulin pump was scary.

During this time, insurance coverage for me was sketchy, so it would be several more years before I decided to take the plunge and join the world of the insulin pumpers. But I did it, not because I heard about this cool new technology. I did it because I saw someone LIVING with this cool new technology.

Over the past year or so, people have been talking about the bionic pancreas thing. I say “thing” because I don’t totally understand how it works, but I get the basics. When I first heard about it, I thought “That’s a cool idea, but I don’t trust it. I don’t want a machine making all my decisions for me.” But being a part of the Diabetes Online Community has put me in the position to know and to “know” people who are at the front lines of this new technology. There are people who are part of clinical trials. And what I’m hearing back makes me think, “I might actually like this.”

Of course, there are a ton of things that have to happen to make this machine something that I can get. And afford. More testing, more trials, more trials, more testing. And then the FDA. And we all know how long it can be for the FDA to get anything done. By the time they do, there may be some other top notch technology waiting in the wings. I don’t know.

But after reading more and more about people that I “know” and that I know, who have been a part of these trials, I have to thank them. Thanks for being that person that opens my mind to new technology. New technology that I’ll hopefully be able to get at some point. Technology that might have as big of an impact on my life as switching from multiple daily injections to an insulin pump.

If I can’t have a cure, steps forward in technology are nice. Huge steps forward in technology are life changing. And thanks for those who are sharing your experience so people like me (the skepctics) can have a more positive outlook on what's coming (we hope).