28 yo male, need opinions
 

Hello everyone, this is my first time posting on a site like this (although I have been an avid site stalker). I really wanted to reach out and get some folks opinions as to what could be going on with me.

I am a 28 year old (recently married) male of average weight. I have no pertinent medical history (except for ADHD since the age of 5). Starting in the Fall-Winter of 2010 my health started to deteriorate. It started with a rash and minor tingling in my left hand – At the time I failed to mention the tingling because it was so minor, and the rash was ultimately diagnosed as Pityriasis Rosea. The catch is the rash went away in a few days, which pretty much eliminates that diagnosis.

Over a period of several months, multiple neurologists, a bazillion tests the PN extended to my left foot, right hand, and left hand – I have never had right foot involvement. The PN was strictly a minor tingling sensation – annoying. I do think some fatigue and brain fog accompanied it. After seeing some good doctors, we determined my B12 was low normal, and my D was CRAZY low. We ‘ruled out’ celiac via blood test and endoscopy. My neurologist recommended I start taking 600 mg of alpha lipoic acid, which in conjunction with a gluten free diet started to rapidly make me feel better.

My wife indicated that I started to have a minor resurgence of PN about a year ago in the Fall-Winter time, and went gluten free and alpha lipoic crazy again (totally forgot about this). And now here we are Fall-Winter time in 2012. The symptoms have changed and it is causing me to go to get re-worked-up. I have had the same tingling on the hands and feet, but occasionally I have had some roaming burning across my chest and the top of my arms. Last night I had an ‘almost’ vertigo like experience, and couldn’t fall asleep until 4 AM. I have also noticed my hands and feet are always colder than everyone elses.

My question is, with all of the major things ruled out, and hopefully remaining ruled out. What could be causing this over such a long period of time, and causing it to resurface around the same time each year? Is it possible that gluten is the culprit? Even with the negative blood draws and biopsy’s? Staying gluten free is a huge challenge financially and from a time perspective.

Is there a risk that this is a more insidious illness even though things like MS were initially ruled out via MRI of head and c-spine?

I just married a wonderful woman, but she has had a tough life and has always taken care of everyone. I am a talented technology worker, I make great money, and I am really scared that I am going to put her in a situation where she is taking care of just another person.

I also wanted to mention before the first time the symptoms showed up, I had just gotten over some flu-like virus (if I recall correctly). And the most recent onset occurred after what is presumed to be montezumas revenge. I was on my honeymoon a few weeks ago, and got food poisoning our last night there. A few days prior I made the mistake of saying "Man this is the best I have felt in years".

Welcome to NeuroTalk:

If you went GF and felt better... that is your answer.

Being gluten intolerant is associated with leaky gut....and malabsorption of nutrients. Are you still taking your B12 (on an empty stomach) and your D3? You should still be taking it.

Other nutrients may be affected by gluten intolerance ...magnesium, calcium, zinc, selenium, all the B's and other nutrients. Over time you may become low in any or all of these as well.

There are other culprits... the nightshade veggies can also create havoc. Potatoes, tomatoes, peppers of all kinds, eggplant. Potatoes especially contain the highest amounts of the alkaloid solanine, which is implicated to be cumulative in the body, so symptoms appear with age/time.

Low D can cause all sorts of tingling/paresthesias. This is because of poor calcium absorption due to the low D.

Things like this are ongoing. They don't "go away", and thus they are for life. That is your genetic inheritance.

The celiac community is now discussing the gluten intolerance issue as a separate disease entity:
http://www.ncbi.nlm.nih.gov/pubmed/23211856

There are bacteria that can cause PN. Old fish, and some from contaminated chicken, etc. Campylobacter is one organism that can cause PN...sometimes severe involvement.
Inflammation of the GI tract also can contribute to leaky gut...where things slip thru tiny openings into your blood stream to cause allergic reactions. Normally the GI wall separates you from nasty stuff you might swallow. But in leaky gut scenarios, peptides, and organisms can enter the body where they don't belong. Some people have immune systems then that over-react and inflammation starts in the intestines. In the worse case scenario Crohn's disease or colitis may develop.

I will say one of the hardest components has been the anxiety I have started to have. I have been taking sublingual b12 and my numbers have been pretty good. My D is still a bit low, I have been focusing on taking 5000 IU a day.

I guess I just need to go GF again, it's such a difficult lifestyle change, but if that is all it takes to feel better -- it is a no brainer. It is just so weird that after 4-8 weeks I can start eating it and 'feel' fine for another 9 months.

Food intolerances are like that.

I just read this summer from a book by a gal who worked in a naturopath's office. She claimed that after a long elimination period to remove an offending trigger food, some people can slowly reintroduce that food, but only once every 5 days or more.

Eating every day will most likely create the same intolerance situation that started the whole thing.

However, after reading the gluten information online for several years, it appears that gluten intolerance is for life.

Check your B12...make sure it is the active form, methylcobalamin. And do it on an empty stomach ...even though you put it under the tongue. The vast majority of that B12 is swallowed with your saliva. If you are one of the 10-30% with the genetic error in MTHFR methylation, cyano form of B12 will not work for you. You will need the active methyl form.