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.

8 comments:

Anonymous said...

Hi, just wanted to ask...did your doctors do a B12 test and what was the level? Most of us whom are gluten intolerant also have very low B12 levels, some of us do not absorb it properly to begin with. If your level is within the normal range, and especially if it is low in the normal range, you should think about supplementing with a good sublingual methylcobalamin B12. I have small fiber sensory polyneuropathy, and I am taking 2500mcg of B12 for now, was taking 5000mcg. I have my level built up to 1800 and have slowed the progression of the neuropathy. My neurologist is wonderful and is fully aware of the gluten connection with nerves. I also deal with gluten ataxia, meaning if glutened, I lose my balance for days.

Medifast Coupon Code 2011 said...

Good post today, good information. And the internet is just so full of information and so happy for you that you are getting the help you need to understand. Smart of you! Best of luck with everything.

Lisa said...

Hello Anonymous!

Thank you so much for your comment. I have had my B12 levels tested several times and have been told each time that it is within normal limits. I'm ashamed to say that I don't know what the exact number is. I intend to find that out at my next neurologist appointment. Unfortunatly, I haven't found a doctor who is very familiar with Celiac. I've been to two neurologists who have both just shrugged and put me on anti-seizure meds.

Has the B12 helped with your SFSP pain? Are you meds as well as B12? Have you been told to give up other foods (other grains, soy, dairy, eggs, etc.)? I would love to hear more.

Thanks again for your comment.

Lisa

Lisa said...

Hello Medifast!

Thank you for visiting and for your nice comment.

It's so important to get the word out there!

Lisa

picnicwithants said...

I'm so sorry you have to go through this.
I agree with you that we are our own best advocates.

I struggled many years before I found out that I have a wheat allergy, and possible celiac. (I won't start eating gluten again to find out for sure, but my doctor feels I probably do)

Since that diagnosis things have been better, but I've had to deal with hypothyroidism, B12 deficiency, and Vit. D deficiency. (as you probably know, often found in people with celiac)
This month I found out I also have fructose intolerance. (the doctors wanted to label me with IBS, again. the same thing they said before finding out I had a wheat allergy.)
I don't understand why doctors can't figure something out sooner.

We'll just have to keep being our own best advocate!
wendy

Lisa said...

Wendy,

Thanks so much for your comment!

I'm glad that you aren't just accepting the IBS diagnosis and advocating for yourself. I hope that someday all physicians will realize how celiac disease and food intolerances can cause many health issues. Until then, it is our job to spread the word. Finding a doctor who will listen and is willing to learn is half the battle.

I hope you are feeling better soon.

Lisa

Anonymous said...

I was diagnosed with Celiac disease about 4 years ago. Not being able to eat whole wheat items it became very difficult for me to get all on the fiber that I wanted and needed in my diet. I started researching to find out what I could eat or take to supplement for lack of these items. I came across this the Lady Soma Fiber Cleanse 3 and a half years ago and have been using it ever since. Its actually a fiber supplement.

It helps keep me full and keeps me regular! This is a great product! I love it!!! I started to look online and was ecstatic when I found it for a fraction of the cost! This is a great product I can not rave about it enough! Worth the cost and short wait for a fairly quick delivery! Love love love love this product! Good luck

Anonymous said...

Lisa,
I just came across your blog because my husband came down with small fiber a year ago and just put two and two together. He has been gluten free for 3 weeks but the pain is still there. I was wondering did your pain ever subside
I truly feel bad for you and hope you have found some relief for that will give me hope for my husband. I see it has been awhile since last post.
Cindy