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?

Twenty-Seven

Twenty-seven. Twenty-seven. Twenty-seven. I’ve been mulling this word (these words?) over for a while now. I’ve used them for a while. But today is the official day. Twenty-seven years ago today I was rushed to the hospital in a nearby town and admitted to the hospital, where I would stay for nearly a week, so that my parents could learn how to take care of their diabetic child and so I could learn to not need two nurses to hold me down while they injected me with life-saving insulin.

It was 1986. Home testing was relatively new. Synthetic insulin was relatively new. We didn’t know how to count carbs, only servings. Blood sugar testing took 90 seconds. I was the only kid in my school (and I’m pretty sure my town) that had Type 1 diabetes. I was only four years old.

I remember so little from life before diabetes entered. I do remember eating ice cream (vanilla fudge swirl) with my dad after dinner. I’d sit in his lap while he sat in his chair and we watched Hee-Haw or some other television show.

I do remember some major things from my diagnosis. Being held down so they could give me a shot. Crying for more orange juice, cause that’s the only thing sweet they’d let me have. The nurse with MAJOR bright eye shadow and buttons all over her nurses jacket. The things a child would remember.

Because I remember so little of life before diabetes came, I have no idea exactly how it changed my life. Sure, there’s the obvious stuff, like insulin, doctor’s visits, the need for insurance, my unparalleled ability to guess carbs correctly… But I don’t know really what it did to ME. My personality, my life choices, who I am as a person.

So I just want to take a minute to be thankful for the things that I think and the things that I KNOW diabetes has provided me with. I believe diabetes has provided me with a better awareness of my health. Thank goodness for that! I believe that diabetes provided me with maturity beyond my years, even as a child, because of so many responsibilities that diabetes brings into your life. In a way, I think that could have kept me out of some of the trouble I may have gotten into otherwise.

And diabetes brought me you. The people I found online who shared my disease, and turned into my friends off-line with whom I’ve shared both joys and sorrows, laughter and tears, fun and friendship, hobbies and common interests. I never would have found you otherwise. So there is a bright side to all of this. Really, today is a day to be thankful. Thankful for my health. Thankful I’m free of major complications. Thankful for my friends. Thankful for technology. Thankful that I’m alive.

So, here’s to 27. While I hope there’s a cure, in the event that there isn’t one coming soon, here’s to a healthy future.

Spare Change

If you're like me, you don't carry a whole lot of cash on your person. But I'd almost bet that most of us could find a quarter rolling around in the bottom of our purses, or in an old coat pocket. A quarter. Twenty-five cents. When we're talking about change, that's not a lot.

But when we're talking about diabetes, twenty-five is a huge number. Twenty-five years ago today, a little 4 year old girl ended up in the hospital. Twenty-five years ago her life, and the lives of all those who loved, and would love her changed forever.

That little girl grew up. I'm almost 30 now. And diabetes is still around. As I'm writing this post my emotions are all over the place. Part of me celebrates. I celebrate LIVING with diabetes. I celebrate friends, and family, and the online community. I celebrate decent health. I celebrate the fact that parts of my life are so much better as a result of things surrounding diabetes.

But I'm also sad. I mourn. I mourn for innocence lost. I mourn for good health that I've never known. I mourn that people are still dying from this disease.

I'm angry because the doctors said "ten years" in 1986. I feel guilty because my health is better than some of my peers (Why did I get the good genes??).

Diabetes is an emotional disease. I am glad that some good emotions are coming out today. I'm going to Knoxville to celebrate a friend's birthday. But I'll also be celebrating 25 years. A quarter of a century of living with diabetes.

And just so you know... I'll probably have ice cream. :)

Small Town Disadvantages

Most of you know I live in a really small town. The closest endo to me is almost an hour away. I travel over 2 hours to get to my current endo. In my town there are basically no specialists; only general practitioners.

Being in a small town can had it's advantages. But when it comes to having diabetes, it can be a huge disadvantage. I have heard from people in my town more times than I'd care to admit, being diagnosed with diabetes and being offered no follow up support at all. Mostly the "change your diet/take this pill/test once a day" stuff. That in and of itself is very frustrating for me. These people have no diabetes education whatsoever and are left with no answers and no questions to ask (because they don't even know WHAT to ask).

Several days ago I ran into a girl that I used to know when I was in school. She was diagnosed by a local doctor about 5 years ago as a diabetic. When I asked her what type she said that they told her she was type 1. And that they had first put her on Novolog 70/30. When she complained to her general practitioner that her blood sugars were all out of whack, instead of changing her medicine, he simply upped her dosage of 70/30.

Due to health reasons (among other things), she lost her job and hasn't been able to work because of wildly swinging blood sugars. She's frustrated and at the end of her rope. She finally went to a different doctor in a different town and that doctor was smart enough to get her on Lantus and Novolog and refer her to an endo. She's still waiting on her appointment now.

When I say that she was given no diabetes education, I mean NONE. She's on a sliding scale and has no idea how to count carbs. She's basically on an exchange system.

I tried to refer her to the D-OC, but she doesn't have internet and has very limited resources. I did suggest that she go to the public library and do some of her own research though.

This incompetance of medical professionals frustrates me to no end. I don't understand how or WHY a general practitioner wouldn't know that 70/30 insulin is not appropriate for a type 1 diabetic or refer them to some basic diabetes education classes.

How do we fix this problem? How do we get help to people in rural areas? I could teach her things like carb counting and insulin to carb ratios, but I'm not a medical professional. She needs more help than I could even begin to give her. I know there is a lack of diabetes education classes in my town. I know there's a lack of general knowledge by medical professionals in my town. But how do I fix it??

Life for a Child

Diabetes Awareness Month brings a lot of attention to all types of diabetes. I'm proud to say that I'm part of an online community that works so hard to bring attention to diabetes year around. This disease is life altering and can be deadly.

If a person has Type 1 diabetes they MUST have insulin to survive. No pill or type of diet will keep a person with Type 1 diabetes alive. Insulin has to be available.

Sadly, not everyone in the world can afford, or had readily accessible insulin. This is a tragedy in itself. However, in this month of November, The Diabetes Hands Foundation has something called The Big Blue Test. It is an initiative to get those with diabetes active. Exercise is wonderful for those without diabetes. To those with diabetes, it can be better and more stable blood sugars, better insulin sensitivity, and healthier effects on the already strained vital organs.

To promote The Big Blue Test, The DHF has put together a video to encourage those with diabetes to get out there and get active (and to participate in The Big Blue Test, of course!).

On top of that, Roche Medical company is donating insulin for every single view of the video. For each time the video is seen through World Diabetes Day on November 14th, Roche will donate a week's worth of insulin to a needy child.

So, even if you do not have diabetes, or if you don't even know anyone who has diabetes, watch this video anyway. Remember, 1 minute and 49 seconds of your time will save a person's life.

So, watch and pass it on. How many times will you be able to say you saved someone's life?
Oh, and I know many of these people. And each and every person in this video has diabetes or is a family member of one with diabetes.

Wrong!

I'm sorry it's taken me so long to post on what I found out when I picked up my medical records. For the first couple of days I was so shocked that I didn't know what to post. Then Christmas snuck up on me and I spent the holidays busy and crazy all at the same time.


I'm hoping that everyone had a wonderful Christmas. My Christmas was different this year. I spent the normal Christmas Eve with my dad and his family. We had a great meal, thanks to my wonderful sister-in-law. Things have been different with holidays in general this year because we lost my grandmother in May. But Christmas turned out good in spite of that. Christmas day, however, was a different story. Early in the week of Christmas, my little sister got sick. Within a couple of days, my mom and step-dad were also sick. Official diagnosis: FLU!


Thankfully, I hadn't been around them in a few days, so I had not been exposed. But I have not had my flu shot and had no desire to risk the flu. So, all of their Christmas presents still sit under my tree. And we are waiting, probably until this weekend, to exchange gifts.


But, I have wonderful friends who stepped right in. I had Christmas dinner at the home of one of my oldest friends (we met the first day of kindergarten!) with her husband, son, and both sets of parents. It was very nice and very wonderful. They are like my substitute family anyway, so it wasn't great to be able to see them on Christmas Day.


I also went with another friend of mine to see The Blind Side Christmas night. Personal recommendation from me: SEE IT! Fantastic family movie.


Now, back to the date. I picked up my medical records on my way to my endo appointment. At first glance the date says 6/15. June. Exactly when I thought. Not really paying attention to anything else, I was feeling kind of happy that I knew the date. Then I took the time to look at the doctor's name. It wasn't my childhood endo. Which made me start reading a little closer. These records were dated 06-15-86. A year after I originally thought my date was. And then on the final diagnosis, I realized it was the records from my tonsillectomy and adenoidectomy. Which I remember vividly as being AFTER I was diagnosed with diabetes. Mostly cause the Popsicles I got after the surgery were of the sugar free variety.



I started reading my records closer. On the second page it states "This patient is a 5 year old white female who has been a known diabetic for the past 4 months."



The past 4 months.



Four months from June is February, 1986. Nearly a year after when I thought my diagnosis date was. Apparently I was closer to 5 than 4. At first I thought the actual date wasn't on the papers. But in the upper corner of the first page there is a box that had been filled in that listed "prev adm date 2/05/86" and "prev dis date 2/13/86". I know that 2/5/86 is my diagnosis date. I was in the hospital for a week, according to my mother, and since the note that say "known diabetic for the past 4 months" narrows it down to February, that leaves 2/5/86 as my diagnosis date.



On one hand, I can't apply for my Joslin medal until next year. On the other, I have 8 months LESS diabetic damage and wear and tear on my body. I'll take the good over the bad any day.



Also, a few funny notes on my medical records:

"The patient was scheduled for T&A until the diabetes was found, and it was cancelled until this could be brought under control."

Urinalysis: 2+ (this might not mean anything to you newer diabetics, but us old schoolers know that's BAD!)

Hemaglobin 12.6 (Ekkkkk!!!!! This is what they considered "brought under control"????)

"The patient takes 17 units of NPH Insulin in the morning" (Wow. That's it.)



So, now you guys know my crazy story. I know my date. And I fully plan on throwing myself a diaversary party! :) Anyone wanna come?