I have been absent from the forum for awhile, but before I dropped off I posted something about going gluten free and wanted to post an update as I have now been gluten free for 7 months.

Starting in December 2010 I had severe neuropathy in my legs, tingling and the feeling of nerves snapping. I was on painkillers and Ambien every night to sleep. After getting through my rounds of RTX and CTX I decided to go to a neurologist to figure out the nerve stuff. The doc spent about 10 minutes checking me out and told me to eliminate gluten, it was likely the cause. My research was taking me that way, and I didn't want to do it, but even more than that I did not want to be on the drug I was taking for neuropathy (Lyrica) and dependent on the Ambien to sleep. So I went gluten free. I am the person that has never been on a diet and I really like big macs and junk food, so for me to go 100% GF with no cheating is kinda a big deal.

So now 7 months later... I have screwed up but have not cheated. I have a friend that owns a GF bakery so if I really need that fix of bread I take two slices of bread out of the freezer, that I have in there for emergencies, which happens about every 2-3 weeks. After going GF I did not have some miracle when I felt so much better and it changed my life, but after about 6 weeks things slowly began to change. The sleep issue actually has changed drastically... I used to take one Ambien and wake up numerous times through the night, and about 4 months ago I started taking 1/2 Ambien and sleeping soundly through the night, which is HUGE! I am now going down slowly on my Lyrica while still only taking 1/2 Ambien a night. So for me going GF is fixing my issue. (It can take 1-2 years to reverse the nerve damage so I am happy with the progress.)

The tipping point for me to go GF was learning that for someone with autoimmune disease, eating gluten is like poking a bear. The gluten just stimulates your autoimmune system. I now have my wegs under control and I just don't want to go through the rough stuff again, so that fear of a flare is enough to keep me GF. And the fact that after being GF for two months I accidentally had gluten and it made me really sick for a day with severe flu symptoms that made me realize that gluten really does cause issues, but you just can't see them until you go 100% GF for a solid 6 weeks or more.

Other than going GF I am trying to go Paleo, a great resource for this is Mark's Daily Apple , I really like the Friday stories from readers. One key to going GF, is to not to replace the GF foods with GF replacement foods, instead try to just replace it with healthier options.

I have found in my research that when your gut is screwed up then you will have issues, even if they don't seem gut related. With all the drugs that we take for Wegs it kills all the good gut stuff and that needs to be replaced, but my doc never told me about that... I seem to learn this stuff very slowly, but this year I have gone to a functional/holistic doc and she helped me to fix my gut and I know there is something to it. I have also read Wheat Belly, The Immune System Recovery Plan and Salt, Sugar, Fat and found them all interesting.

I got so much out of this forum when I was really sick and this is my way to contribute back a bit and hope that someone might find this helpful.

One thing I ask is please do not hijack this thread. It is very frustrating to find exactly the thread you need and then to have to wade through tons of posts that have nothing to do with the information that you are desperate to find. Sorry if that sounds a bit bitchy, but some folks don't realize that they do it, so I figure that putting it out there might help etiquette in the forum to make it even more useful for folks.

Best of luck and take care!