13 replies to this topic

[bee]

Has anyone either tried or heard of trying to manage symptoms using a gluten-free diet? I have always known that certain carbohydrates really aggravate my EDS (and consequently I stay away from carbs during the day), but someone suggested to me yesterday that perhaps it's actually gluten that is causing the reaction. I have yet to ask my neurologist, but I spoke with a GI doctor and it was like a light bulb went on - he said that scientifically, it would make a whole lot of sense. I'm just curious if anyone else has tried this or heard of it as an option.

[loriharley]

I have not heard of anyone on a gluten free diet, nor do I know much about it. However I also have tried a carb free diet and have been on it for about 3 weeks. Its definately made a huge difference. I try and have an omlette for breakfast then mid morning when I feel myself crashing I grab a piece of chicken, something that will keep my energy level up. No Dr. that I see seems to feel that there is a link between diet and narcolepsy, or that you can decrease the symptoms with change in diet. I disagree I strongly feel there is some correlation. I decided to see a homeopath, had my first apt. and go back next week she will be checking for an intolerance to sugars, starches etc. I will certainly ask her about the gluten. By the way this is the first time Ive seen a homeopath always thought it sounded a little skeptical, now Im grasping at straws. I've also made an apt with a dieticien, although I feel much better too much protein is hard on the kidneys. Please email me if you discover any info regarding the gluten free diet. THANKS

[mpollock]

Carbohydrates are the main energy source for the human body. Eliminating them from your diet WILL cause you to "crash" and be more lethargic. Your best bet is to eat whole grain products rich in fiber and omega-3s.

[bee]

A gluten-free diet doesn't exclude all carbohydrates; it only excludes wheat. Gluten is not present in rice, potatoes, corn, etc., so those things generally still can (and should) be included in a gluten-free diet.

[Heidi L]

Me!

I'm positive gluten is the trigger. I was low carb for a long time, it helped, but my symptoms still progressed. I am now in complete remission on a gluten free diet. My recovery was so dramatic I did some research and I think I found the autoimmune mechanism. I wrote a scientific paper about it.

I posted my story here:
http://www.lindborglabs.com/table.html


If a gluten free diet helps you, please email me your story. I am trying to gather anecdotal evidence to motivate research into this hypothesis.

Thanks!
Heidi

[bee]

I've been gluten-free for 3 weeks now, and I wanted to post an update: My EDS has decreased so dramatically that I have essentially discontinued my medication! Before last month, that would have been completely unimaginable to me. I still have mild cataplexy, but this diet is literally changing my life. My doctor said he had never heard of it helping N patients, but it is truly giving me my life back. I have never had a GI/digestive issue, so avoiding gluten never occurred to me, but I'm so glad I tried it. I'm not sure why it's working, but it is. If you are looking for non-medication remedies, I recommend trying this diet; it's free and there are no negative side effects.

[Heidi L]

Technically, gluten is found in wheat, barley and rye. Here's a pretty good overview:

http://www.healthnow...uten_foods.html

[Heidi L]

By the way-

Provigil has gluten in it as a binder ingredient.

[sleepyonew5]

The gluten free diet sounds very interesting to me. Where did you find a
diet? I totally believe nutrition has everything to do with how one feels. Doctors do not want to believe in nutrition because as usual there is too much money involved in dispensing drugs and none with nutrition. I really want to try the gluten free. I have done the no carb and it made some differences. All the things I love are bad for me. I have lived with Narcolepsy for approx. 60 years and have tried many, many things. I would give anything not to be so damn tired all the time.

[Heidi L]

sleepyonew5-

I have a few starter links here:
http://www.lindborglabs.com/Links.html
scroll down to bottom

and if you google "gluten free" you will find more information than you ever will need!

I hope it helps!
Heidi

[sleepyonew5]

Thank you so much. The information you sent is very, very helpful. I ordered some cookbooks today. I really think this diet just might be the answer.

[OPERMOM]

check out the artificial sweeteners especially in coca cola.....research -it has all the symptoms of narcolepsy. I have given up all coca cola.

[OPERMOM]

I have also reduced my provigil which I believe in overdose can make it worse. opermom

[Suburban Girl]

The gluten free diet sounds very interesting to me. Where did you find a
diet?

myspecialdiet.com

People with metabolic disorders use this site to find the foods they need, and to help manage their diets. I'm there too, as my son has PKU.

It's a wonderful place that gives you lots of choices, and tools to help manage. You can also order gluten free foods there, such as pasta and bread.