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.

How Do You Educate the Educated?

One of the things that comes up too often in our diabetes community would be the number of those we loose to undiagnosed diabetes. Too often, adults and children are lost because a doctor misdiagnoses Type 1 diabetes as the flu, or a parent or the undiagnosed adult, assumes it is the flu and doesn't seek medical care. We can't stop those who don't seek medical care, but when a medical professional misdiagnoses Type 1 as the flu, people often die.

I know it's like beating a dead horse (a terrible saying we have in the South), but we always put forth suggestions (including a blood glucose test for anyone presenting flu symptoms) and I'm not sure anything ever actually happens. I know we'd all love to see these changes. And perhaps it will happen. How do we educate those who are educated to diagnose Type 1 diabetes?

As I've also been thrown head first into the whole Celiac world, I've found that medical professional negligence at diagnosis isn't relegated to Type 1 diabetes. I've discovered that it also happens to those with Celiac. While the death isn't as immediate for those with Celiac (if they are undiagnosed or incorrectly diagnosed), it can lead to years of suffering, other diseases, and death.

Some of the long-term health conditions are listed on celiac.org. Two of them are listed as iron deficiency anemia, and vitamin and mineral deficiencies, both of which I had a my time of diagnosis. These are the least of the issues, others include increased instances of cancer, early onset osteoporosis, central and peripheral nervous system disorders, etc.

According to Celiac.org, 1 in 100 people worldwide have Celiac disease. More than 40% of people with Celiac disease appear to have no symptoms at all (I count myself among that 40%, despite the fact that I had celiac related anemia, and I'm fairly certain my years of anxiety and depression were also closely linked to undiagnosed Celiac). Approximately two and a half million Americans have undiagnosed Celiac disease. This pdf file contains a quick guide to Celiac.

One of the first things that any respectable gastroenterologist will tell you is NOT to stop eating gluten if you think you might have Celiac disease. The Gluten Intolerance Group  states "Do I have celiac disease, non-celiac gluten sensitivity, or wheat allergy? Diagnosis is key to this knowing the answer to this question and being able to follow the diet that is right for you. This is also the most important reason not to start a gluten-free diet before being tested and getting a diagnosis."  

Yet, so many medical professionals (and well meaning friends, co-workers, family members) will say "stop eating gluten for a week and see how you feel." Or more professionally, advise their patients of a food elimination diet to see if a person has food sensitivities. I've only had Celiac disease (diagnosed) for seventeen months, and I've had at LEAST three people that have told me their doctor told them to stop eating gluten, and did not advise them to be tested for Celiac disease.

It happened again today. I was tagged in a post of someone I don't know by a friend. It was asking about my Nima sensor, and I responded. Then I read the original post. It was a mother who's child potentially has gluten and dairy issues. The doctor advised going gluten and dairy free for a while to see how the child feels. I do my best to hold it together, but I always have to step in. I tried to give some information, a few links of information, and really  tried to impress upon her to not remove gluten until being tested for celiac disease.

Here's the deal: If you have Celiac disease and aren't diagnosed, when you remove gluten you start to feel better. Yet you have to currently be consuming gluten to be tested for celiac disease. If you stop eating gluten you can never get an accurate and confirmed Celiac diagnosis unless you start to consume gluten, on a regular basis, for around six weeks before being tested. Who is going to  go back on gluten if they feel so much better without it?! Therefore, you don't get a diagnosis.

I can't state where it was that I got this information (I simply don't remember), but there was a gastroenterologist in the Europe who specialized in Celiac. When he came to the U.S. around 20 or so years ago, he was told to pick another specialty because "celiac is a European disease." This is information that was being taught in our medical schools up until fairly recently, if my information is correct. Due to this, medical professionals were taught about it, but that it was rare.

Celiac is not a food allergy. You can't diagnose it properly using food elimination methods, as you can so many food allergies. In my personal opinion, if a doctor thinks that gluten could be an issue, they should always test for Celiac. According to Gluten Intolerance Group, diagnosis for Celiac should start with a blood test (sound familiar DOC?) to test for tTG, EMA, and DGP antibodies. They also state "Because no one of these tests is ideal, panels are often used."   The follow up by saying that "if this screening suggests Celiac disease, a small intestine biopsy is the next step to confirming diagnosis." This can confirm damaged villi (the hallmark of celiac disease).

These are the exact steps my doctor used. I was screened by my general practitioner, the panel came back suggestion Celiac, she scheduled me an appointment with a gastroenterologist and TOLD ME TO CONTINUE TO EAT GLUTEN. I met with the gastroenterologist who scheduled my biopsy and TOLD ME TO CONTINUE TO EAT GLUTEN. There were six weeks between my positive blood screen and my biopsy. I had a strong feeling, based on my knowledge that 8 - 10% of those with Type 1 diabetes have Celiac, that I would have Celiac as well. I spent that six weeks eating all the things I knew I'd not get after my biopsy results came back.

I'm blessed. I had a good general practitioner that  listened to me and didn't brush off my symptoms (exhaustion for no reason). She suggested the Celiac screening and I'm glad she did. But not everyone is as blessed as me. What happens when your GP suggests you eliminate foods? Especially if you have gastrointestinal symptoms? The average person is going to listen. I probably would have. What happens then? You live a life on a gluten free diet that you will never know if you actually have Celiac Disease, a wheat allergy, a gluten sensitivity, or other related issues. You won't know which diet is best for you. And you won't know what follow-up care to get, what tests to have done, and what other issues to look for.

There are tons of stories floating around on the internet (and in gluten-free support groups all over the world) of people who were misdiagnosed, ignored, told to eliminate gluten without a proper diagnosis. I wondered to myself today, "Do doctors have to take continuing education classes?" I did some research. They do. My state of Tennessee requires 40 hours of continuing education classes every two years. Two of those hours are required, by state law, to be in controlled substance prescribing (opioid epidemic anyone?). There are no other requirements. I'm not sure what kind of continuing education that doctors take, but I wonder if there's a way to have some sort of requirement made regarding new and changing medicine. Maybe they all are. But how do we get out the word about the fact that Celiac is NOT just a "European disease" and that some people (40%) don't present with gastrointestinal symptoms?  How do we get out the word that the "flu" could be a deadly disease that will kill someone because it is actually Type 1 diabetes?

General practitioners don't have it easy. They have to be a jack-of-all-trades. They have to know a little about a lot. You can't catch everything. But I think we as a society (and as a medical community of caregivers, patients, and professionals) could do a better job about getting out the word about disease that can affect so many people, causing long term health complications, other health issues, and death. According to JDRF.org, about 1.25 million Americans are living with Type 1 diabetes. If my math is correct, this means there are actually more people living with Celiac disease than with Type 1 diabetes (I had no idea!).

Either way, we have two disease that can be diagnosed fairly easily (a simple blood test) and it often doesn't happen. A simple blood test that could save a life, and improve the health of so many others. What do we do to make this happen? Is it still beating a dead horse to ask the question again? How do we change these things? How do we educate those who are trained to diagnose illnesses? How do we educate the educated?

Navigating without a Compass

We all know that living with diabetes isn't easy. There are ups and downs and rollercoasters and burnout and frustrations. We bond together and we get through. I've always lived with diabetes (at least it SEEMS like always). I found friends to help me through. I have good days and bad days, but overall, I understand diabetes.

I have limits, there are levels to count and numbers to interpret that tell me where I'm at on my diabetes journey. A1c, and carb counts and blood sugar numbers are all things that are there, sometimes instantly, to let me know how I'm doing. High number, give some more insulin. Low number, give some less insulin (and treat that low!). A1c, let me know over several months how I'm doing overall. I have a constant glucose monitor that I wear, almost all the time. It lets me know when I'm getting too high or low. I can seen trends and make changes based on those trends.

To me, diabetes is, for the most part, understandable. Maybe not predictable, but understandable.

Things like blood sugar meters and constant glucose monitors are my compass in my diabetes life. They help guide me.

Celiac is a totally different story for me. I was diagnosed, while having no obvious symptoms (aside from anemia). I have none of the gastrointestinal issues that many associate with celiac disease. Because of this, I feel like I'm leading my new, gluten-free life without a compass. I feel as if I have no way to tell if I'm doing what I'm supposed to be doing.


I've stopped eating gluten. I read labels. I replaced many of my kitchen items. I call restaurants to find out about gluten free items. I talk with wait staff. But due to my lack of symptoms, I have no idea if I'm actually consuming gluten, in unknown ways.

I don't have a number to guide me. I can't know that I'm going it right because I feel better....because other than sleeping better, nothing has really changed for me in the past four weeks.

I feel lost. Like I have no compass and I'm unsure which direction I'm going. I know I'm at least sort-of going in right direction. But I could be miles off an be completely unaware.

Thankfully, I have a great medial team, friends who support me (off line and online) and a family who loves me. I know it will (or I hope it will) get easier with time. But can someone please come up with a compass for me? A celiac compass? That would be great.

Life Goes On

Despite my celiac diagnosis, my life has to go on. So far, since I have gone gluten-free, I've only eaten out one time. Luckily, this restaurant had a gluten-free menu, so I didn't have to worry much about what I was going to eat.

Even finding things to eat in my house is sometimes difficult. I've already had a couple of nights where I have walked in my house and thought, "What the heck am I going to eat for dinner?!" I've been thinking about things like meal planning and left overs for lunches and stocking my pantry with non-gluten-y things.

Tomorrow, however, I head out for drinks with friends. To a restaurant that I have never been to and no nutritional information listed on the website. So I did it. I made "the call."
I had heard, from some online chatter, that this place has gluten-free hamburger buns. But I had questions regarding their waffle fries, and how their burgers are prepared.

I did all the things I've been told to do. I called around 3:30, when it is less busy. I asked to speak to a manager, who was very nice. I introduced myself and explained that I had celiac disease and was planning on coming to the establishment and that I had some questions. He was quite friendly and very knowledgeable. They do, in fact, have gluten free buns for their burgers. The waffle fries are out because they have a breaded onion and some breaded veggies that they fry in the same fryer. Mr. Manager answered a few other questions I had and I felt confident when I got off the phone with him.

Hopefully tomorrow will go smoothly and I will have no trouble with finding something I can have on the menu. As much as I HATE being the person who "bothers," I know I don't have a choice anymore. The choices I DO have are to stay at home and never eat out, or to do what has to be done to eat out without endangering my health. As much as I hate it, I WILL NOT let this disease (either disease) stop me from living my life.

It is going to make my life different. I'm going to be unsure and uncertain for a while. I'll mess up. I'll make mistakes. I'll learn new things. So even when my anxiety is at 1000% over what to eat and what to do, I'll keep on. I don't have another option. I won't stop living.