My Son - Dystonia and Gluten?

[Niki1977]

My son has been diagnosed with this stupid Generalized Dystonia. It's stupid because what is GD anyway....everybody seems to have a different story!!! He is five now. The first 'symptom' he had was that he was a heavy drooler from early on and it has never stopped. But he sat, crawled and walken on time.
He does not have any spasms or contractions really, but he is very wobbly, cannot stand still or straight. Cannot sit up straight, his neck will get sore and he will tilt it to the side if he is sitting for a period of time. When he stands his legs will bend under him.

Other than this he is a strong, able and bright kid. Three seperate neurologists have diagnosed with with Dystonia, but we are yet to find a test that tests positive. They have also never seen a case like his before.

I feel like I'm the only parent of a kid like this. I've never read a story or found anybody who had the same symptoms at this age.

I feel so alone although I'm surrounded by people that care and support.

Does anybody think that starting him on a gluten free diet would be any good?

[swift]

A gluten free diet wouldn't necessarily cause harm, so from that perspective it might be ok. I do remember my paed neuro telling me of one girl they'd had whose was triggered by chocolate, and equally that some types are helped by alcohol.

I think the feeling alone happens a lot, because it's not a common condition (particularly primary rather than secondary). I certainly would echo that feeling at times ;) (particularly as I'm an adult now, so I make my own decisions on treatment).

[Niki1977]

http://brain.hastypastry.net/forums/showthread.php?t=30556

This is a link to a post I made on the Child Neurology forum. Please could you have a look and comment.

My main concern is the fact that Christian does not have noticable spasms. He definately has a movement disorder, but there are no sustained muscle contractions as I know as a main symptom of Dystonia. Are these still to come?

[teaandtoastgirl]

Does anybody think that starting him on a gluten free diet would be any good?

I think this is an excellent place to start. I am 56 years old, had truncal dystonia since I was about 4 and multi focal dystonia since 2004. I am in remission on a gluten free diet and have been since May of last year. If I get gluten, I get torsion. It's as clear as that for me.

I started my gluten free living in October of '06 with numerous neurological symptoms presenting. While most of them cleared up in the first few months, the dystonia took longer, but was established longer too.

There are many kinds of testing available. The traditional ones are one way to go, but you'll need to "load gluten" for an accurate test. I like the company Enterolab from Texas. Youn don't need to load gluten to have an accurate result. The test is done at home and mailed. You can find more information about the company at www.enterolab.com.

I do not have celiac disease and I don't have the classic celiac genes,.. HLA-DQ2 or HLA-DQ8. But I carry an HLA-DQ1 gene, which recent research has proved is adversely affected neurologically (as movement disorders) by anti-gliadin antibodies (gluten).

I had this test done by Enterolab. I chose this one because I am one of 6 children and about 80% of siblings who have a gluten sensitive sibling are gluten sensitive themselves. This information enabled me to give a "heads up" to my siblings, several of whom already have a neurological condition themselves but have not had the possible gluten connection mentioned by their docs.

Two excellent books to read on the subject are Dangerous Grains, by Braly/Hoggan and The Gluten Connection, by Shari Lieberman.

I hope this helps and your little boy is feeling better soon.

[teaandtoastgirl]

Hi Again,

Here's the gluten page for this forum. I think you might find it helpful. Also click on The Gluten File, I think it's the third thread down. This is an excellent reference file.

http://brain.hastypastry.net/forums/forumdisplay.php?f=152

[mpalmer118]

Hi again,

I just reponded to your post on Child Neurology, but have some thoughts to share about your questions here.

He does not have any spasms or contractions really, but he is very wobbly, cannot stand still or straight. Cannot sit up straight, his neck will get sore and he will tilt it to the side if he is sitting for a period of time. When he stands his legs will bend under him.


I didn't think that Rachel's tilting was a contraction either. She could straighten herself, but then would immediatley tilt again. Same with legs now. Her stuff has gotten slowly more severe and easier to recognize as a contraction.

About testing, do you know what they tested for? Dystonia is only positive on the genes that have been medically *discovered*, so a negative test doesn't mean much. (hope that makes sense)

I think if you are willing to give it a try goint gluten free is a good place to start. It may take months to notice a difference, so be sure to make a long term commitment to the diet even if you don't see immediate results. I looked into it but have never done it, although it is still bouncing around in the back of my mind. :p

Mary

[RTFlynn]

I think Dystonia can manifest in several ways. Have you checked the Dystonia Medical Research Foundation's website? (I don't have link but you can google). If several Neurologists have said so I would go with that for now, over time it will be confirmed or dismissed. If you have a Trader Joes in your area, they have lot of gluten free products. Better to manage it earlier than later, I am in my late 40's and have serious, serious neck issues in the aftermath of 3 failed surgeries because surgeons dismissed neurologist diagnosis of Dystonia (segmental) because my spasms were not overt.

[Black57]

Greeting all,

I am having a heck of a time posting here. I hope this works. I would like to introduce myself. My name is Mary and I have been conversing in the epilepsy/Atkins diet forums. I have been researching neurological disorders for various reasons. I have been doing the Atkins diet for over 5 years and I had some interesting experiences with this besides the expected weightloss. I had migraines, achy joints and itchy skin that vanished soon after beginning this diet. Something that I had not expected which increased my curiosity in
finding what other healing powers are in this and similar diets. I have articles on how the low carb/ketogenic diet has been used to treat neurological maladies such as parkinsons,strokes,alzheimers,ms,epilepsy as well as cataracts. But why am I here on the Dystonia forum. Of course it is neurological disorder. I have been also learning more about gluten sensitivites and how removing gluten from one's diet can be helpful.I actually learned about gluten sensitivity through some of my low carb, gluten sensitive friends. One of them steered me in the direction of removing gluten to treat some dystonias. Eventually I found myself here.

My interest in Dystonia-I know of a musician in Minnesota, Billy Mclaughlin, who has had this malady for nearly 10 years. There is a documentary being made about his experience. I saw many of his performances when I lived in Ohio in the early '90s. I will post his site which I recently discovered earlier this year. Find out how he adapted in order to continue his playing career.Here is his site http://www.billymacmusic.com. I hope that you visit his site, find it helpful or encouraging and can,perhaps, give him some help with your experience. You will find a link to the Dystonia Foundation on his site. Although I will post it here:

Jill Burgos <jburgos@dystonia-foundation.org>, This is Jill Burgos',of the Dystonia Foundation, email addy. This link is for the Dystonia Site http://www.dystonia-foundation.org/

I hope this post makes sense, I am in a hurry, on my way to teach some flute lessons.

Cheers to All,
Mary:p