Gluten, Glutamate free diet

[Janeg]

Since it looked like I might have some MND in August I went gluten and glutamate free. While my EMG is consistent with ALS according to my neurologist I have no muscle weakness. My symptoms have improved over the past three months, going up and down- sometimes no fasciculations/twitches/cramping at all and lots of energy still. I believe now I have suffered from Celiac Disease for a while as I also had a severe dermatological condition when the neuromuscular symptoms first emerged in 2012. That horrible skin problem has also disappeared with the new diet. My neurologist did not pick up on my other symptoms during my appts. to date (and I don't have another appt. until April!) and I have had no tests for Celiac at all. I'm wondering if my gluten sensitivity is the cause of my bad EMG or whether this exists at the same time as ALS. I also dumped glutamate just to give myself a chance to mend. Anyone else have any related experiences to share?

 

[pearshoot]

continue the diet, you are on the right path. I just finished reading GRAIN BRAIN, which contains a lot of published research done in the last ten years

 

[Janeg]

I also read that book recently. I have even found a mainstream research paper which talks about a man whose Celiac symptoms mimicked those of ALS. I would think every neurologist who treats ALS (and mine is a such a specialist) would consider all the possibilities for diagnosis and also treatment as medicine doesn't offer much to those with ALS. In my case, the doctor seems to think I probably do have ALS (although it would be "anomalous" because I have no weakness) and was quick to put me on Rilutek (although due to side effects I'm now off it). I'd really like to know if there are others with ALS or PLS who have tried going gluten- and/or glutamate-free in an effort to reduce symptoms and progression of the disease.

 

[pearshoot]

doctors are quantity oriented and will not take time to discuss or know about alternative treatments. quick prescription rilutek and send you on your way. rilutek is like supplements, can't tell if it helps or doesn't. never took it but have used various supplements for last four years. there is just too much recent published research to ignore. stem cell scams have no published papers but these studies come from well known universities and hospitals published in well know health journals

 

[Janeg]

I think I was put on Rilutek so I could qualify for a trial for a new medicine but I wasn't weak enough for it in the end. I am also taking many supplements and vitamins (maybe 20!), coconut oil and flax oil...why not? It makes sense that diet can help ALS or MND because diet is also important in other ailments like diabetes, epilepsy, etc...

 

[Janeg]

still eager to know: anyone in this forum on a gluten and/or glutamate-free diet? does anyone's dr. talk about diet at all?

 

[Barbie]

MY HUSBAND just decided to try a new diet--not gluten free but by some woman with MS who says she was almost cured by eating tons of veggies. I am simplifying it--but based on nutrients that the nervous system needs. More veggies never hurt so why not! good for me too. (and easier than when My husband decided to become a vegan...)

 

[GregK]

MY HUSBAND just decided to try a new diet--not gluten free but by some woman with MS who says she was almost cured by eating tons of veggies.

Hi Barbie,

Could you share some additional details, a link perhaps...?

 

[olly]

Hi,i have a gluten intolerance and have to be careful of high gluten foods...things like bread,rich sauces are very high.
Strange thing...my son has eczema quite bad also asthmatic . He has been told this week he needs to have a colonoscopy as they suspect inflammatory bowel disease, possible celiac .
Never entered my mind it could be connected with his other stuff.
Will look into a total gluten free diet.
Monosodium glutamate was supposed to be a possible factor in ms damage

 

[Barbie]

Greg--will get the name. it is on youtube.

 

[Tony292]

I have not went gluten/glutamate free yet. I can tell an enormous difference though if I eat something loaded with MSG, my fasics go through the roof! A while back I gave in to a craving and had my first Big Mac in a year and 45 mins later I was twitching like crazy. I have since started paying more attention and Chinese food seems to have an effect as well. Maybe it is coincidence, but I do believe I am seeing a trend. Aspartame though seems to have zero effect.

 

[olly]

Tony,chinease food has a bad effect on me........can eat a super hot curry no problem.

 

[Fitforlife]

After you read the new book "Grain Brain" you will understand everything about the dangers of gluten and a high carb diet. I am reading the book a second time and am shocked at what I am leaning. I am following the ketogenic diet recommended in this book very religiously. I am measuring my ketones weekly with a meter to make sure my body is fat/keto adapted. I have a 50/50 chance of getting ALS because this disease runs in my family (3 so far have died). My goal is the stop ALS from every starting in my body over the remainder of my lifetime.

Chapter 5 is the most important chapter because it covers epigenetics. We now know the food choices we make, the stress we experience or avoid, the exercise we get or avoid, the quality of our sleep and even the relationships we choose actually choreograph to a significant degree which genes are active and which remain suppressed. I believe we can change the expression of our genes that have a direct bearing on our health and longevity.

 

[olly]

I totally agree with "you are what you eat".......in my earlier years with mnd I did eat a lot of processed foods but now I have a super healthy diet ,all fresh food cooked from scratch and hardly any processed(only what you can't avoid )
I think this has helped and slowed down my progression.

Can diet have a direct effect on genes themselves....not quite sure about that.

 

[affected]

I think that referral to genes is not so much changing genetics as affecting genes expressing themselves.

For example someone could have breast cancer in their family history - does a healthy lifestyle and diet help prevent them developing breast cancer themselves - the expression of the gene?

It is something medical science doesn't really look at enough, but then people don't always want that advice either.

Watch a person who is unhealthy, overweight, underexercised go to a doctor with all their complaints and get told how to rearrange their lifestyle and they frown and ask if there is a pill that will fix them ...