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Old 06-07-2007, 10:27 PM #11
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LizaJane LizaJane is offline
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LizaJane LizaJane is offline
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LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
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Hi--I haven't read all your posts so I don't know your full history, but I wanted to get a word in anyway. Gluten intolerance does not necessarily have to have intestinal symptoms, and may have unusual symptoms. The look of people who have gluten neurological illness and gluten GI (Celiac) disease is different, but detectable. So, if you KNOW you do not have pure bowel neuropathy, there are some specific things which you might do or try.

1. Get the HLA typing for celiac. Neurological gluten intolerance has a specific HLA type, and most of true celiac has a different one. It can point you in a direction. (See my charts for aid on this, or just use enterolab).
If you don't want the testing, I'd suggest one month of zero gluten (this really isn't that hard to do, and I began MY month June 1), and seeing how you feel. Check out the celiac board here.

2. Probiotics. We have all been on antibiotics at some point, and if not, we eat antibiotic loaded meats and fowl. Probiotics can solve all sorts of GI problems. I found that Align (made by the Metamucil people) cured me of a lot of symptoms in one week. My doctors all like Florastore, and some people here swear by PB8 or Jarrow.

3. Depends. Okay, now this seems awful, but I must tell you that last week I prepped for a routine colonoscopy, and I could not control things and bought some depends. I was astonished at how totally comfortable they were. They did not feel like paper, did not feel like diapers. Rather they felt like a sanitary napkin embedded in underwear that is well made and will never leak. I relied on them for two days, and found them completely acceptable. Okay, I wouldn't want to wear them around a boyfriend or lover, but you dont' have to then. You can just feel safe when going out and about.

That's all, some ideas. Good luck.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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