Pharmacy called, it'll be $16 with co-pay! Ready Wednesday or Thursday of this week. Pam, I'll ask about shelf life, thanks!

@kansasgal That's great. I do not think my insurance will cover it as I have to go to CVS for my drug insurance. Mine will be $60.00. Pam

The initial screening is a simple blood test. I think, as more doctors are aware of Celiac Disease, they will think to do it more often.
You give good advice.

Celiac Disease, if you carry the gene for it, can be triggered at any age. You may want to be screened again just in case. That said, of course, not all cases of SFN are from Celiac Disease. I just threw my suggestion out there because so many doctors failed to screen me. They figure I have had Celiac Disease for two decades (at least). It was only in recent years that I went on to develop the neuropathy. I just feel blessed that they did identify the cause as I am so vastly improved.

My doctor took me off all GF foods unless they are "certified". Turns out the GF pizzas I was eating are often contaminated. That said, it is my understanding that those who have been on the GF diet for decades are finding it easier these days, primarily because of the better labelling of foods and the availability of the flours you are talking about. I have been diagnosed 4 years now and it is way easier as I learn, but I found it enormously difficult at first. I am a terrible cook to boot.

@kansasga Dr. William Davis (book "Wheat Belly") and Dr. Daniel Perlmutter (book "Grain Brain") and other Doctors like them recommend not eating any GF processed foods. A lot of what manufacturers put in GF foods is as bad, or worse for one's health than gluten! Pam

Another blood test of the protocol is genetic. And I've learned that some of the standard blood testing is not deep enough and there are specialty tests for celiac. I think these things are important to know for the folks that are idiopathic.

Hi Chris,

No stressors except my medical issues. Really! I'm very lucky in this regard. I cannot relate the fluctuations in my SFN symptoms with anything for certain.

I have idiopathic neuropathy. I am on 300 mg of Gabapentin & I take 200 mg at bedtime & 100 mg in the morning along with 60 mg of Cymbalta. I have been on Gabapentin for 4 months now & I'm still in pain & it seems to never go away. What exactly is Idiopathic Neuropathy? Is there a time when you don't have any pain or does this gabapentin just relieve some of the pain. I don't know what to do & I hate for the dr. to keep increasing my dose. I would appreciate any advise. Thank You Genie

@tigreyes2004 – From the dictionary online:

id·i·o·path·ic
/ˌidēəˈpaTHik/
Learn to pronounce
adjective MEDICINE
relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.
For example "idiopathic epilepsy"

@jager5210….I am back from my clinician appointments and have reflected on your issue: stressors. You are unable to relate the fluctuations in your SFN symptoms with anything you recognize.

For me, this is a mind/body/spirit issue. I share Hippocrates' viewpoint that “the nature of the body can only be understood as a whole, for this is the great error of our day in the treatment of the human body, that physicians separate the soul from the body.”

The other point I pondered was this. If a stressor is a stimulus and stress is the response, and I have no stressors then what is causing the SFN pain I feel in my hands, etc? We do know that stress can load you up with adrenaline and other hormones that wear away at your cardiovascular system. We do know that it exacerbates pain.

So, @jager5210, would you feel comfortable sharing how your SFN symptoms fluctuate? Level of pain, and type of pain or discomfort? Area of the body? Length of pain….chronic, intermittent?

Thanks so much for hanging in there…..please have happiness this evening. Chris

Hi Chris,

I like your point of view and I appreciate your willingness to help me focus in on what the 'stress issues' might be. I will have to get back to you in a day or three because my pain level is too high to sit at the computer and type intelligently. On the other hand, I wish I could compose my thoughts during these periods because I am more acutely aware of how complex the pain experience is for me. It's not a single or simple type of pain but a melody that changes by the minute until I have to find someway to minimize it like laying down. It's also not in a single area of my body but in my toes, feet, legs, fingers, hands, arms and sometimes my chest, face and tongue. And then there's my low back pain which provides a constant backdrop of pain for the neuropathy.

I had a visit with a new primary care physician who is in the Piedmont Group as opposed to Wellstar or Emory. He read to me that my neurologist wrote that I had SFN mediated by stress. Here's the interesting thing about this is that I've never been asked about stressors in my life by any doctor except for a cardiologist when I had a cardiovascular event 4 years ago.

My body is telling me my time is up in front of the computer. I do need to try and put into words all the different impressions I have of my pain but it's hard to do when I'm in pain.
Thanks for your concern.

@jager5210, Thank you for the response. While you are resting, I want to try and be helpful…stay tuned. Let me know when you are ready. Be at peace with your body. Chris

@kansasgal – Just picked up my compounded Phenytoin 10% topical! Will be starting it today. How is it working for you? LMK Pam

Pam, The pharmacy just let me know it's ready. Please let us know how it works for you too. Good luck! Kristen