Tuesday, March 8, 2011

Celiac Disease - More Than Just a Belly Ache

As some of you know, I've been dealing with some pretty nasty neurological pain issues in the last several months.  I haven't posted too much about it because, well, I really didn't want to talk about it until I had a little more information about what was causing it.

I've hidden my pain from most everyone.  It's not visible to the human eye.  Most days I get out of bed and go about my daily routine as best I can and just "fight through it".

The pain I'm talking about now has a name.  Small Fiber Peripheral Neuropathy.  This diagnosis was just confirmed about a week ago after visiting two neurologists and having way too many blood tests, MRI's and neurological exams.  Well, actually, the diagnosis was "some kind of neuropathy, but we don't know what's causing it, so here take these pills and come back in four weeks".  I only came upon the actual name of the neuropathy after much internet research.

Small Fiber Peripheral Neuropathy affects the small nerve fibers in your skin.  These fibers receive signals from the brain and control skin sensations such as temperature and pain.  When you burn your finger on the stove or feel a cool breeze, it is your small nerve fibers that transmit that feeling to your brain to tell you that you hurt yourself or need to put on a sweater.  Damage to the small fiber nerves disrupts this process and basically all Hell breaks loose.

For me, this means that I feel like I have a bad sunburn all over my body.  Clothes hurt.  I get chills, even though my skin feels hot.  I have trouble sleeping.  It affects every part of my day and everything I do.

The reason that I am writing this post today is that I want to get the word out there that the probable cause of my neuropathy is my Celiac Disease.  I don't know why it took me so long to figure it out.  I've been researching on the internet for months, trying to find an answer.  Finally, this past weekend, I came upon it.  It hit me like a ton of bricks.

I found this article on Celiac.com.  It is entitled "Up to 16% of Patients with Small Fiber Neuropathy May Have Celiac Disease".   Wow.  I had considered that the cause of my issues were Celiac-related, but here it was, in black and white.  Proof.    It was written by The Neuropathy Association.  The kicker....this article was written in 2003!  Why do mainstream doctors not know about this???

"In addition, patients with celiac disease tended to have a type of neuropathy called small fiber neuropathy which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression, noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help."

So, after finding that article, I dug a little deeper.  I found this website Small Fiber Neuropathy.Net .

And this one: Center For Peripheral Neuropathy at University of Chicago

Needless to say, I am printing out copies for every doctor I know.  It makes me angry that I had symptoms of this since the time of my diagnosis in 2007.  Not one doctor mentioned that Celiac Disease could be causing these symptoms.  Since I had cervical disc issues at the time, the doctors just assumed that I was having nerve issues related to that.  I just sat back and believed them.  I had neck surgery.  Instead of the pain going away, it just kept getting worse.

Now that I have a diagnosis and a cause, I have to find out what my treatment options are.  For right now, it's LOTS of medications.  I'm not happy with this option, but it's the only one available at this point.  I also need to figure out why, since I am so careful about my gluten-free diet, that things are getting worse and not better.  I'm sure it's going to take a lot more research, doctor visits and prayer to help me find a way to get through this.

So, I guess the moral of my story is, please, if something is not right with your body and you know something is off, don't just accept the first answer the doctor gives you.  Don't just write it off.  Investigate.  Ask questions.  You are your best advocate!  It's taken me three years to learn this and it's been a painful lesson.