looneymom Posted May 9, 2014 Report Share Posted May 9, 2014 He had a segment on gluten that was very interesting. Dr. Oz had a guest doctor that had been on his show before. This doctor was showing some before and after vidoes of patients that had tremors/twitching in the face and arms. I cannot remember what this doctor's speciality was but he made the comment this could happen because of a brain barrier leak. You have heard of a leaky gut, but it's also possible to have a leakly brain. Sounds funny I know but it make sense if the gluten protein can cross over into the brain barrier. If I can find the video clip of this I will try to post it. This was on Dr. OZ 's show yesterday. Anyway, I was just impressed with the fact that these patients went on a gluten free diet and their symptoms went away for them. None of these patients had POTS but they sure had some of the same strange symptoms that we talk about on the forum. I am now thinking more serously about doing a gluten free diet with Tyler for a month to see if it brings any relief for him. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 9, 2014 Report Share Posted May 9, 2014 I saw it! Yes, it was Dr. Perlmutter(not positive on the spelling). I had read his book "The Grain Brain", which talks all about wheat and its gluten effects on the body.It was amazing the before and after with the patients. I hope more people(in general, that have mysterious health issues) go on a trial of gluten free to see if there ailments are helped. I've been GF for about 1.5 years.Forgot to say, yes, it would be a good thing to try with Tyler! Sounds like some of his patients saw positive results within a week or so! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 9, 2014 Report Share Posted May 9, 2014 Hi Rachel,I didn't get any relief from going gluten free but I wanted to mention to you that my gi doc said it had to be done for a minimum of 3 months to be able to tell if you are getting any benefit. Apparently the gluten hangs around and so do the symptoms for some period of time after you stop intake. I did it for 4 months just to be sure. I didn't find it as hard as many do to make the transition. I found a bread mix and a corn bread mix I liked and that made it pretty easy. King Arthus Gluten Free Sandwich Bread and Bob's RedMill Gluten Free Corn Bread Mix. Hope this helps him if you do it.Katie Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 9, 2014 Author Report Share Posted May 9, 2014 I don't know if this will help Tyler but we are going to start the diet on May 26th. Tyler has IVIG treatment the weekend before. He did not really feel like eating anything for several days after his first treatment, so this might be a good time to take the plunge. He does not have the gene or testing that shows he's gluten sensitive but maybe it's causing the inflammation in his body due to his other immune problems. My husband and I thought it might be worth a trial. The anti neuroantibodies that have been found in the brain could also be causing the inflammation, So if going gluten free does not help, it has to be the neuo antibodies that's causing the problems.KatybugI have a store in town that carries the red robin gluten free mixes. I'm going to start planning meals. Tyler already likes Annies Gluten free mac and Cheese. Quote Link to comment Share on other sites More sharing options...
kayjay Posted May 9, 2014 Report Share Posted May 9, 2014 I'm a big proponent of the gluten free diet. I found for me anything less that 100% gluten free wasn't helpful.Also keep in mind that casien is very similar in molecular structure to gluten. Some people need to be off of casein while their body heals.It's totally worth trying in my opinion. My teen son went gluten free over a month ago. My teen daughter has been gluten free for almost 2 years. I'd highly recomend gluten free for anyone with IBS or neuro symptoms.I know I've said it before but it has been the best thing I've done for my health. Quote Link to comment Share on other sites More sharing options...
kayjay Posted May 9, 2014 Report Share Posted May 9, 2014 Look up the research of Dr. Hadjivassiliou if you need encouragement.I apologize for not having the details but I recently read (somewhere) an article suggesting that problems with gluten can cause the body to make auto antibodies against the pituitary.My mayo clinic neurologist suggested I go gluten free in 2009. I mentally had trouble so I used EnteroLab and also had a genetic tests. Quote Link to comment Share on other sites More sharing options...
badhbt Posted May 11, 2014 Report Share Posted May 11, 2014 Here are some clipshttp://www.drperlmutter.com/never-forget-show/?utm_source=facebook&utm_medium=facebookpost&utm_content=blogOzSecond&utm_campaign=Facebook%20Posts Quote Link to comment Share on other sites More sharing options...
blueskies Posted May 12, 2014 Report Share Posted May 12, 2014 I went gluten free for 3 months years ago (well before diagnosis) to see if it would help me in anyway. I saw no change. However, I ate oats (in form of porridge). Then it was fine to eat oats on gluten free but have read conflicting info about it. To gluten free people, are rolled oats in or out of a gluten diet? ta, blue Quote Link to comment Share on other sites More sharing options...
kayjay Posted May 12, 2014 Report Share Posted May 12, 2014 Oats are a problem for many. My son is oat sensitive. Gluten free oats or regular oats, he has the antibodies against them. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 12, 2014 Author Report Share Posted May 12, 2014 I have decided to stay away from the oats with Tyler. Tyler is drinking almond milk and I am cooking with it now. So I have already started toward the gluten free diet.I am finding recipes that are easy to use. However, I need to find a store that carries the flour mixes. I am going to check at a Reasor's that's not to far away from me. I live an hour away from a very large city. Can anyone suggest a grocery store chain that carries the different Gluten free flours? My local walmart does not carry them. Or is there a good place online to order them from?Thanks for posting the clips badhbt. This is pretty conviencing evidence. Just hope this diet will effect Tyler pretty quickly.I would like to know more about healing the brain with fatty oils. If anyone runs across a good article, please post. I am doing some more research in this area. It does make sense because only certain things are able to pass through the brain barrier. Quote Link to comment Share on other sites More sharing options...
dawn Posted January 31, 2015 Report Share Posted January 31, 2015 Amazon carries many gluten free products Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted January 31, 2015 Report Share Posted January 31, 2015 I went gluten free quite a while back and found that it improved my neuropathic pain and GI issues. It is definitely worth trying. I use almond milk as well. The unsweetened vanilla one or the unsweetened plain one depending on what I am using it for. Quote Link to comment Share on other sites More sharing options...
TCP Posted February 8, 2015 Report Share Posted February 8, 2015 I am gluten free. http://deliciouslyella.com/ Quote Link to comment Share on other sites More sharing options...
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