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Old 07-04-2003, 06:44 PM   #1
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Post neuropathy & gluten intolerance

Has anyone heard of gluten intolerance (Celiac disease)
as a possible "cause" of neuropathy symptoms?

 
Old 07-13-2003, 01:47 AM   #2
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Yes, I've been seeing this. I was confused at first about gluten or glutamate intollerance. While there are many people who are gluten intollerant, I've seen info about glutamate toxicity causing neurologic problems. (Although anything you're allergic to can cause devestating problems.)

Is this along the line of what you're looking for, or are you strickly looking for info on gluten intollerance?

Brice

 
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Old 07-13-2003, 08:24 AM   #3
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what is gluten?
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Old 07-30-2003, 03:58 AM   #4
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I think gluten is found in wheat and grains.

[This message has been edited by riceneuroni (edited 08-03-2003).]

 
Old 07-30-2003, 04:35 AM   #5
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riceneuroni - (cute name). Can't answer your question but interested in your experience w/ this. Just about everything, it seems, has gluten in it somewhere.
I don't see how people go completely glutenfree BANG!
I'm wondering if it might help my PN a little to go off
glutin foods gradually or partially, would that do any
good at all or show if I'm on the right track? I wish you well with your Celliac problems.

 
Old 07-31-2003, 03:45 AM   #6
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Apparently it is a 100% or nothing deal. No slip ups, no cheating or you're doing no good.


[This message has been edited by riceneuroni (edited 08-03-2003).]

 
Old 08-09-2003, 05:07 AM   #7
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Hi All,

After Sturgeon's original post 7/4 I looked into this and found the link between gluten intolerance and neuropathy strong enough to give going gluten-free a try.

It's been two weeks. This is too short a time to determine if there is a cause-and-effect relationship to anything, but here is how I feel.

1. The pain in my arm and legs has subsided. Specifically this is the newest pain I've been having that was shooting up the large, deep nerves.

2. The swelling in my ankles that has been nearly constant since starting neuropathy last year has subsided except for a small amount late in the afternoons when I've been busy.

3. The small-fiber nerves are totally calmed for longer periods more now than before, but we're only talking about hours per day, and then, only as long as I'm not touching those areas. They are as sensitive as ever to flaring up when being touched.

4. I need fewer Methyl B12 tablets per day to put the pain down.

5. I'VE LOST 10 LBS! I think there is a definite connection here since I'm not pigging out on pizza 3-times a week.

It was necessary to obtain the most super blend, super nutrient supplement available in order to make up for cutting out grains.

I have an appointment with an internist next week. In the meantime, I've decided to keep up this treatment.

Sturgeon, have you been trying this? Has anyone else been trying it?

Hope you all have a pain-tollerable day.
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Old 08-26-2003, 07:21 PM   #8
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Quote:
Originally posted by sturgeon:
Has anyone heard of gluten intolerance (Celiac disease)
as a possible "cause" of neuropathy symptoms?
Hi,
Dr. Norman Latov completed a research project in which he has shown that there is a definite disease entity known as Celiac Neuropathy. His recommendation is to be tested for Celiac Disease and if positive it will require a change in diet. If you contact the Neuropathy Association website: [url="http://www.neuropathy.org"]www.neuropathy.org[/url] and Email:info@neuropathy.org you might be able to get a back copy of the Neuropathy News, Issue 12:12-01-Holiday Issue. The lead article written by Norman Latov,MD., PHD. is entitled Celiac Neuropathy. Incidentally he is my neurologist and one of the leading authorities and researchers in peripheral neuropathy. He is Director, Perpheral Neuropathy Center at Cornell University Medical Center in NYC. You would have to look far and wide to find a better neurologist and or compassionate human being. In my eyes he is the best!
Don

 
Old 08-30-2003, 01:37 PM   #9
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Well, I went gluten free 7/17 and it's now 8/30, and thought I'd give you an update.

Before 7/17 the pain was increasing daily and I was really scared. On 7/19 I noticed there was no more increase in pain and thereafter realized there was definitely no more increase.

The decrease has been somewhat erratic. It's like two points down, one point up, one point down, two points up, three points down. The trend, though, over the course of the last month-and-a-half has been down.

I've been walking since noon yesterday! Two glorious days of walking WITHOUT severe pain. The feet are burning right now, but they didn't burn last night --and that's a first for the amount of walking I did yesterday.

Have a great weekend – keep looking for a cure!

 
Old 08-31-2003, 07:56 PM   #10
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has anyone known gluten intolerance and associated celiac disease and d.h. to be connected to neuropsychiatric disorders? ie. depression, bipolar, social anxiety. obviously i am a bipolar, a severe ultra, ultra, rapid-cycler and have not been stabilized on the 30 some odd psychotropic meds i have taken during the last ten years. never been tested for gluten intolerance, however do have ibs symptoms as well as itchy pustules that form on my face, head, and back(figured it was adult acne). is there anyone out there who can provide me with any known connection of these diseases? i would be awfully grateful for any information. mo

 
Old 08-31-2003, 08:17 PM   #11
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has anyone known gluten intolerance and associated celiac disease and d.h. to be connected to neuropsychiatric disorders? ie. depression, bipolar, social anxiety. obviously i am a bipolar, a severe ultra, ultra, rapid-cycler and have not been stabilized on the 30 some odd psychotropic meds i have taken during the last ten years. never been tested for gluten intolerance, however do have ibs symptoms as well as itchy pustules that form on my face, head, and back(figured it was adult acne). is there anyone out there who can provide me with any known connection of these diseases? i would be awfully grateful for any information. mo

 
Old 09-01-2003, 12:23 AM   #12
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I think so. Gluten intolerance (and the associated Celiac disease) cause the intestines to not absorb nutrients properly. I can't tell you which all nutrient depletions cause which problems, but there are many studies confirming this. They're easy to find online. Our government's National Institute of Health posts lots of data on nutrition, nutrients, and associated research.

Your face breaking out can be indicative of a food allergy such as yeast (it may not be, but it's something worth considering). IBS can be indicative of a food allergy such as dairy intolerance. Some food allergies have gastric symptoms, some do not. I would not be at all surprised to discover that bipolar disorder is related to some nutrient imbalance.

It's important for us to pursue these possibilities on our own because doctors will not. There is not even a test yet for gluten intolerance. My IBS was horribly out of control for years, and I repeatedly asked every doctor and specialist I saw if it could be a food allergy. I was always emphatically told NO, there was something wrong and we had to test until we found it. I was "cured" four days after stopping dairy. I don't even apologize for sounding angry.

Good luck in your search, and I hope you get to feeling better real soon.

 
Old 10-02-2003, 04:45 PM   #13
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hi folks,
i happened to be looking for information on a link between feet burning and gluten since i am a celiac patient. a few messages came up where gluten is mentioned and i wanted to clarify some misinformation.
the advice someone gave stated that there are no tests for gluten sensitivity or celiac disease so the best thing to do is to cut it out of your diet. that is actually terribly incorrect and could have some potentially damaging results. i realize the individual was only trying to help but i needed to clarify.

first, there are several new and improved blood tests for celiac disease (gluten hypersensitivity) which you should explore at [url="http://www.celiac.com"]www.celiac.com[/url] - a wonderful resource for any celiac or individual considering a gluten free diet. secondly, several people, like myself were given advice to cut gluten out of our diets prior to testing. what we were not told is that all the new testing that is available is dependent upon having gluten in the diet. consequently, there are several people with a serious condition that are left without a proper diagnosis because they jumped the gun. it is very important to be tested for celiac disease/ gluten sensitivity prior to going gluten free. the irs even offers a tax break if you are reliant on a gluten free diet, which is much more expensive due to its specialized nature, IF you have the diagnosis. it is clear to me and my doctor, based on my symptoms and family history, that this is what i have, but i think it is very helpful for someone to know definitively to be taken seriously in the medical arena. because of how difficult this diet it is to maintain, a person should know if this is just a lifestyle choice or if it is critical to their survival.

i wish you all well and hope this helps. i just couldn't see that message and not clear it up because of all the difficulty that advice has caused for me and countless others. as i said, i know it was not done out of carelessness or malice. it is great to see how supportive you all are. best of luck.


 
Old 10-02-2003, 05:52 PM   #14
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riceneuroni & others who have responded to my post in early July: I'm grateful to you for your interest & good advice. Then, & now, & have considered the possibility of gluten having a causal effect on PN but hesitated to act on that idea. I guess partly because I wondered if I had every condition I read about but mostly because I just don't know where to begin. As I
said earler, totally GF sounds overwhelming... I don't see much in groc or healthfood stores that would replace the cereal & breadstuffs I rely on in my diet.
Could anyone suggest a first step (yes, I do need to get some books) & tell how difficult it is to change one's entire eating habits so drastically? Thanks to the last post above, I may wait til I see my Neuro in Nov & ask about a blood test for glucose intolerance first. I'm very glad some of you have had success with
this approach & thank you all again for your good advice.

 
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