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riceneuroni 02-19-2004 03:34 AM

How Gluten can cause Neuropathy
 
This is for those with idiopathic neuropathy. That's neuropathy from an unknown cause. You may want to consider an undetected reaction to gluten. An estimated 1 in 133 people of Northern European descent are intolerant of gluten, and most don't know it.

What it does to those folks (me being a primary example) is cause damage to the villi in the intestines. It renders them corroded (for lack of a better term), and unable to absorb nutrients properly. A lack of proper nutrients can lead to neuropathy, as it did in my case.

What it is is a substance in wheat, rye, and barley. There are some blood tests that possibly might indicate an intolerance to this, but do your research before deciding to rely on these. The only treatment is living on a 100 percent gluten-free diet. It's actually turning out to be very easy -- now that I'm doing my own research on what is and is not gluten free. The diet is no big deal, just a matter of eating the right brands and substituting other flours for gluten-contaminated ones.

I'm posting this just to give you food for thought. Someone posted the info I read and I was so desperate to try anything for relief I figured why not try this? The doctors weren't coming up with any better ideas - just telling me my neuropathy was not treatable. WRONG!

After two months on a gluten free diet I started noticing a reduction in pain. After three months I could walk on my own feet again and didn't need the wheelchair. That was last October. Now Im symptom free and living a normal life again without wheels!

Please consider gluten intolerance if you're looking for some answers--and don't give up trying to find them. Research, research, research and try everything. I finally found something that worked for me, and you can too; but not if you just rely on doctors for the answers.

snowmelts 02-19-2004 10:23 PM

Re: How Gluten can cause Neuropathy
 
I think it's great that you found the cause of your neuropathy and are making huge wonderful progress. It's GREAT to read success stories. :)
Best of luck to you.

MichaelNYC 02-22-2004 08:31 AM

Re: How Gluten can cause Neuropathy
 
[QUOTE=riceneuroni]This is for those with idiopathic neuropathy. That's neuropathy from an unknown cause. You may want to consider an undetected reaction to gluten. An estimated 1 in 133 people of Northern European descent are intolerant of gluten, and most don't know it.

What it does to those folks (me being a primary example) is cause damage to the villi in the intestines. It renders them corroded (for lack of a better term), and unable to absorb nutrients properly. A lack of proper nutrients can lead to neuropathy, as it did in my case.

What it is is a substance in wheat, rye, and barley. There are some blood tests that possibly might indicate an intolerance to this, but do your research before deciding to rely on these. The only treatment is living on a 100 percent gluten-free diet. It's actually turning out to be very easy -- now that I'm doing my own research on what is and is not gluten free. The diet is no big deal, just a matter of eating the right brands and substituting other flours for gluten-contaminated ones.

I'm posting this just to give you food for thought. Someone posted the info I read and I was so desperate to try anything for relief I figured why not try this? The doctors weren't coming up with any better ideas - just telling me my neuropathy was not treatable. WRONG!

After two months on a gluten free diet I started noticing a reduction in pain. After three months I could walk on my own feet again and didn't need the wheelchair. That was last October. Now Im symptom free and living a normal life again without wheels!

Please consider gluten intolerance if you're looking for some answers--and don't give up trying to find them. Research, research, research and try everything. I finally found something that worked for me, and you can too; but not if you just rely on doctors for the answers.[/QUOTE]

Again, Hi and thank you. I just mailed this post to my friend as I did your previous posts. Did you have a biopsy to determine your intestines were damaged? What about blood tests? Are all cheeses OK to eat? This friend has started doing research and is switching to a gluten free diet. Fortunately, she lives very close to two very large health food stores. I can't begin to tell you what your messages have meant to this friend. It has brought her some hope. She is 73 years old, never married, no family, few friends and lives alone and wants to continue her independence and not end up in a nursing home. Prior to this illness (4 years ago) she belonged to a Mountain Climbing Club and thought nothing of walking 5+ miles every day. She almost never took buses or the subway. Now she walks with extreme difficulty with the aid of a cane and almost never goes out in fear of falling. Again, she has some hope. She sends you blessings and many, many thanks.

riceneuroni 02-23-2004 04:06 AM

Re: How Gluten can cause Neuropathy
 
Michael, Hi and thank you for posting an update on your friend; I've been thinking about her and wondering how she's doing. Hope is a wonderful thing. It kept me going for a long time while I searched for my cause.

I have an appointment on March 3 with a gastroenterologist. I'm wanting to get a colonoscopy and biopsy, so we'll see if he's willing. There are some blood tests that might possibly indicate gluten intolerance. Last time I checked (a few weeks ago) if you took 3 different tests and all agreed positively or negatively then there was around a 95 or 98 percent chance that you had your answer. If your friend is interested in the tests I'm sure you can find out what they are. I don't remember any more as I have not had them. I didn't know about them before. One of my doc's did order one of the tests but kept insisting that no matter what the results I should not get off the diet. At that time I was already recovering and the test was going to cost me over $100, so I figured why bother if I'm going to ignore the results anyway?

Finding gluten free food is actually no big deal any more. As far as I can tell, most of the food manufacturers are very aware of gluten as a source of severe allergies in some and have been working to get it out of processing. In America at least they've switched to corn for distillation and other non-gluten flours instead of wheat for thickening. I found this out by calling the 800 numbers on the foods and talking to the researchers. It's amazing how much some companies know about this. When a package doesn't have an 800 number I go to their website. Many times the FAQ will address whether gluten is in their foods or not. If not, there is usually a phone number for contacting them. Only once I a non toll-free number.

I figured I was out of luck getting gluten info for generic brands but even that was short-sighted. My grocery store, Albertson's, puts out foods with their label and I like the foods and the price break. But the foods have no phone number or manufacturing information and the website only had email contact. I figured it was a futile effort, but asked for gluten info anyway. I got a list in the mail detailing every food they label and the AMOUNT of gluten contamination in each. Wow! I found out here that all cheeses are not safe. Some are, some aren't.

You want to be amazed? Check out the Frito-Lay website. It categorizes many know allergies and diets and lists the foods safe or hazardous for each. I couldn't believe it -- but it figures the junk food folks would be leading the way! I hope everyone follows suit, and it looks to me like they're heading in this direction.

Please keep me posted on your friend's progress. I really hope she's found her solution. If not, maybe a time of hope will help her to keep looking and searching. You're a really good friend.


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