Nuerological symptoms relieved by diet

[Marciab]

Hi folks,

I came here looking for an explanation as to why my neurological symptoms have vanished and I believe I found it. But, it was tucked away deep into the Gluten sensitivity forum.

As of September 2006, I started walking normally all of the time (ataxia) and I no longer have othorstatic hypotension.

Back in August 2006, I was able to eliminate Klonopin (seizure med) for myoclonus. The change started back in April, but it took me awhile to withdraw from Klonopin.

From what I have read this "miraculous recovery" ( ) is due to the fact that I eliminated gluten.

http://jnnp.bmj.com/cgi/content/full/72/5/560

My question is "Can this board put this info up front so that others coming here will see it right away ? "

I have been to many nuerologists (including the Mayo Clinic) and no one tested me for celiac or gluten sensitivity. If you have been to the Mayo Clinic, you know I was tested for everything else though.

I would have never found out about gluten/celiac if my digestive system had not simply stopped working and my GP had not put me on the elimination diet.

Even my GP, whom I think very highly of, did not think I was a celiac. I left her shaking her head on our last visit.

The NIH released a study back in 2004 designed to educate the medical profession, but not many have taken note.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Notice in this article, you do not have to have any digestive symptoms to have celiac or gluten intolerance.

I hope you will consider my suggestion. Thanks ... marcia

Oh, and please chime in if you have had a similar experience.

[annelb]

Hi Marcia, I am so happy that you found that a GF life gives you better health. When gluten is the problem, it is like a miracle. I have been gluten free for three years and have a long list of symptoms that either vanished or vastly improved. My main symptoms were fatigue, depression and peripheral neuropathy. Other symptoms were dry skin, eyes and mouth, headaches, GERD, joint pain and more. My doctor's diagnosis before I went GF was "you are old" - I was 60 at that time. I now feel younger than I have in many years.

Those of us who have found that we are gluten sensitive often post pertinent articles and personal experience on other forums. GS/CD has about 250 symptoms and is associated with all the autoimmune diseases. It can be linked to arthritis, heart disease, infertility, depression and other psychological disorders. There is some thought that it can cause other autoimmune diseases. There is evidence that a gluten free and casein free diet help with autistic spectrum disorder.

Here is the link to the Gluten Sensitivity/Celiac Disease forum here on BT http://brain.hastypastry.net/forums/...play.php?f=152

For anyone interested in learning about the ins and outs of diagnosis, symptoms and associated diseases go to The Gluten File http://jccglutenfree.googlepages.com/home
Anne

[The_One]

There have been studies showing as many as 1 in 130 people may be celiac and as many as 1 in 10 may be gluten sensitive! With all this information, I can't believe doctors are SO reclutant to take us seriously when we tell them we think we are gluten sensitive. I know because I have talked to many doctors and even the best one [who told me my neurological symptoms may be linked to something genetic, finally!] was very hesitant when I said the word celiac...

I think doctors need to see that Gluten is causing chaos! they need to open their mind to the possibility that many, many diseases are being cuased by gluten sensitivity, even a simple thing as ashtma, or a kid who behaves badly, or one that doesnt seem to be good in school... hopefully in the future everyone will be tested for gluten sensitivity and we will finally realize how bad those grains are being to our body...

I am glad you have been feeling better, in the two weeks I went almost completely gluten free I noticed a drastic change, in my mood, in my stomach symptoms, not to mention I wasnt trowing up or even nauseous anymore and even in my neuropathy [for which now i have to take medication after starting on gluten again].

[Marciab]

Anne,

Thanks for replying. I can't believe your doctor. Geesh !!!

I saw the info in the gluten sensitivity section, but was actually trying to help people see that their myoclonus or ataxia could be from gluten.

I would have never paid attention to info about gluten sensitivity / celiac if I had not seen a dramatic change from just removing wheat from my diet.

My doctors had me convinced that my nuerological problems were from CFIDS.

Do you have any ideas on how to make this info easier to find ?

Marcia

[Marciab]

The One

Glad to hear you are feeling better too.

I am confused as to how the medical profession can be so clueless about celiac / gluten sensitivity too.

I thought the NIH would be responsible for educating doctors about something like this. The CDC sure let everyone know about bird flu .... or was that the press ?

marcia

[jcc]

Originally Posted by Marciab

Anne,

Thanks for replying. I can't believe your doctor. Geesh !!!

I saw the info in the gluten sensitivity section, but was actually trying to help people see that their myoclonus or ataxia could be from gluten.

I would have never paid attention to info about gluten sensitivity / celiac if I had not seen a dramatic change from just removing wheat from my diet.

My doctors had me convinced that my nuerological problems were from CFIDS.

Do you have any ideas on how to make this info easier to find ?

Marcia

Hi Everyone...just found this post while googling around actually.

Hi Marcia. A few of us have tried to get this word out... in fact just opening a gluten sensitivity forum on a neurology board was a HUGE first step! Last I counted, this information should be posted on about 20 different forums here, if not more. At one time, I did have links and info in the useful websites of many of the various forums (including ataxia, pn, epilepsy, ms, cfs, fibromyalgia, MG, Diabetes, and more)...before we lost everything to a giant crash last summer. I also posted about it a lot... in fact, to the point of people being annoyed by it... so I cut back .

The other part of the story is that most doctors only recognize biopsy proven celiac disease...when in fact, a more cryptic gluten sensitivity can cause neurological and other symptoms. So... it is an uphill battle, but thanks to the research of some amazing people...like Dr. Marios Hadjivassiliou... this is all slowly coming to be accepted.

Well, it is nice to meet another crusader. Perhaps we will have to make a concerted efforted to get a post out in every forum that might benefit... I've been a little distracted lately, but I agree with you and others this words needs OUT!! Would you believe four years ago I tried to get it into an Epilepsy Foudnation newsletter and was rejected because they said the connection was weak? ARGHH!!!

It is tragic that anyone should suffer from neurologic disease that might be preventable or reversed with dietary changes. I could say the same about vitamin deficiency and neurologic disease...especially vitamin B12.


Cara

[Marciab]

Cara,

Thanks for replying. I feel your frustration. I joined the Daily strength epilepsy group and we move board to tell them about celiac.

The Daily strength board is a combination of different illnesses so I thought that would be a good place to get the word out. I was already on their celiac board, but not very active ... Who has time for all this ??? (Insert googly eyes here )

I was already a member of celiac.com and the immunesupport board. Both have helped me tremendously in healing ...

I just hate the thought of anyone going through what I did ... MRIs, EMGs, sarcastic doctors ... 16 years of not being able to walk any distance ...

I understand the View is having a segment on celiac next week. I am going to email them to see if they will be discussing the nuerological side of celiac too. Perhaps you would like to email them too.

Any ideas you have would be appreciated. Marcia

ok, I just saw on celiac.com where the view will have a segment on celiac on friday not next week ....

[WINGLETTS]

I just had some brain surgery, by angiogram so having problems with seeing in some ways....and still headaches...from coil and stents...

On this gluten your talking about....I had gall bladder surgery in 2005 then after surgery a biliary leakage...wow what a year.. I have and stay bloated all the times. and have trouble having full bowel movements....now just got diagnosed with brain aneursym in 2006 ,,help with diet someone....

your friend in deed
Linda

[annelb]

Hi Linda, sounds like you have been through a lot and sorry you are not feeling well.

As far as gluten being a problem, it is possible. Some doctors believe that gluten affects the health of up to 30% of the population although only 1% have celiac disease.

Please visit the gluten sensitivity/celiac disease forum here on BT http://brain.hastypastry.net/forums/...play.php?f=152

Also, have you checked out the aneurysm forum http://brain.hastypastry.net/forums/...splay.php?f=85
Anne

[jd3]

Marciab,

I am glad for the improvement in your health . Also thank you very much for your post. There is a growing recognition of gluten sensetivity. It would be pretty easy to try a gluten free diet. In my case, PN and depression, what can I lose?