I alluded to this in an introduction of myself and my son. I looked through the Co-Conditions and Co-Factors forums and didn't see a specific forum for Gluten sensitivity or related subjects as related to MS. Our experience is there may be a connection - in that Gluten appears to play a role of some sort in my Son's MS - and in peripheral neuropathy for me.
I have no idea of the mechanisms that may connect CPN and Gluten - and I'm not at all certain there is any - they could simply be co-conditions or co-susceptibilities for some.
There is a known condition - "Gluten Ataxia" - that can be googled - and you will find lots of information - including stories of folks who went off of gluten and had a miraculous appearing recovery from gluten. Google Roger MacDougall - and MS - and you will likely find his story.
My purpose in creating this "forum topic" is threefold:
1. To point out that if you have MS - a "Presumptive Treatment"may be called for - <e.g. the Empirical Treatment that DW refers to>. A "Presumptive Treatment" for gluten sensitivity is simple to do - and requires no medical intervention or oversight. You simply quit eating anything that has gluten in it for a period of time. Gluten comes from Wheat, Rye and Barley. It is a long chain protein molecule that is thought to be similar to myelin - though I don't know if that's it's only mechanism of action.
Gluten is sneaky - and can be found it lots of things where it isn't labelled as such (vinegar, toothpaste, shampoo even) - but - if you do your research - it is not at alll difficult to do a gluten free trial. If you are very sensitive - you may notice a difference nearly immediately - within a week. Rick did - and each time he accidently ingests it now - he gets very immediate and noticeable symptoms. Increased weakness and balance problems are his first sign. For me - in order to notice the symptoms - it takes 3 weeks of a "gluten challenge" - the oppositive of going off of gluten - to notice the symptoms again - which are warm tingly feet - like wearing a pair of electric socks. If gluten is playing a role - going off of gluten may speed up your recovery while on a CAP protocol.
2. To find out if anyone else here - has had any issues with Gluten - that they might be willing to share. I'm convinced that Ricard would already be bedridden or worse - by now had we not eliminated gluten from his diet - largely anyway except for occassional cross contamination at restaurants.
3. To ask that anyone with a medical background - and in particular Dr. Wheldon - has any knowledge of a connection between CPN infection and gluten sensitivity. I have a theory that CPN could weaken the blood brain barrier and allow some kind of bad actor <gluten or antibodies to gluten come to mind> - across into the brain where it can do havoc. That is based on the observation that Rick - sensitive to gluten and has MS - and has signs of gluten ataxia that have reversed <lesions in his cerebrum that have dimiinshed> - while I - no MS - still gluten sensitive - get peripheral neuropathy symptoms if I ingest gluten for 3 weeks. That's just a layman's notion - any thoughts or knowledge of other mechanisms - or ideas - particularly from an informed medical professional such as Dr. Wheldon or others - would be terrific.
I would greatly appreciate any and all responses on this subject. I hope that item 1 - a "Presumptive Test" of going off of gluten - if tried by anyone - makes a difference in their life. It has for me in a small way <no warm socks - lowered blood pressure> - and in a HUGE way for Rick - who has MS - and will be starting a Wheldon / Stratton protocol in October.
Thanks again to everyone in this forum - it's a delight to be here - I keep broadening and deepening my knowledge through reading all your posts - getting started, the handbook <fabulous work there> - etc.
Best & highest regards,
Proud Father of Rick & Jamie...