Hi Tom,
This is something I've been wondering about for a while. When I started to get sick with various unexplained diseases, I got myself tested for celiac disease. I was negative but my mom is celiac so thought I'd try the diet. I'd been diagnosed 20 years earlier with fibromyalgia and had been seeing a physio twice weekly for muscle pains in neck and shoulders. Going gluten-free decreased my problems by over 90%. Various other GI and skin and allergy problems disappeared as well.

Many of my Sjogren's buddies have found going gluten-free has helped their pain and inflammation levels. I was already eating healthy organic veggies, lots of whole grains, etc before going GF so it wasn't that big a change for me. But I think sometime in the future there will be genetic and medical research showing that clean, simple food with lots of nutrients helps the body deal with all kinds of autoimmune processes.

I also see a naturopath who has helped me with other nasty digestive issues that eating GF didn't address. I now am no longer deficient in a long list of vitamins and minerals. This kind of "funtional medicine" can certainly help people with AI issues. Mainstream medicine says "You are within normal range" for various items so you must be crazy. It was my naturopath that picked up that my muscle weakness was much worse when my potassium was in slightly below normal range, same when my thyroid was a little off. She has never had an MG patient before but I've read that both potassium and thyroid should be well controlled for MGers, so she just naturally had more sense than all the docs in the ER who would see me with my trouble breathing. I credit her and her supplements (fish oil, betaine hydrochloride, potassium and B vitamins) for keeping out of the ER for over 2 years while we were waiting on an MG diagnosis.

So, in short, I'm not sure good nutrition can CURE MG. But I do think that it can help keep the disease under better control.
Flutebell

I do better without gluten and dairy.
Fruits, veggies and protein work best for me.
I think 50 years from now they will have determined MG is diet related and sleep related.

Flutebell - It's interesting that going gluten-free decreased your problems by over 90%. I think I'll give it a try. I wouldn't expect a complete cure from a change of diet. We all carry around things that can get out of balance and flare up, like shingles.

My daughter has all kinds of allergies and is very limited in what she can eat or be exposed to, including florescent lights. If she goes shopping or is in any building with florescent lights her skin goes red and she feels ill. I wrote our Senator when they made us go from incondescent to CFR light bulbs and told him about her sensitivity. I have never been alergic to anything, or else I have a high pain threshold or low level of awareness. Brome and Timothy hay used to make me sneeze a lot and make my eyes red and tear up when we had horses, so I avoided buying those when I could. But I would recover a few minutes after getting out of it, so it wasn't that big of a deal. It was mostly just annoying, except for the time I drove into a Brome hay field and stood talking to the rancher (or trying to between sneezes).

Ann - It's interesting that you mentioned sleep. During my working years I probably slept 4 or 5 hours a night for many years. Most people need more. I haven't thought of that possibility before.

I've noticed that I don't want as much milk as I used to. Sometimes I feel a little off color for a while if I have too much milk or ice cream. Maybe I somewhat sensitive to it.

Thanks, Tom

I ran into a friend yesterday who is a physician with a practice in integrative medicine. When I told her about my MG diagnosis, she immediately suggested trying a gluten free diet because of the research connecting gluten with auto-immune disease. My husband is already gluten free, so it should be a simple enough thing for me to take the plunge and try it for a month.

I am celiac, and had been gluten free for 10 years before the first signs of MG showed up.

For me, a healthy diet that avoids the processed and packaged foods and sugars, along with 8 cups of water a day works best.

Is diet a cure? No, I don't think so, I still got the MG and 3 other autoimmune diseases, and allergies that showed up when I was less than a day old. I will say that a proper and healthy diet has kept me going for as long as I have, and I am sure it will continue to do so.

If you are wondering about food sensitivities, you may want to consult a natropathic doctor. They can be very helpful in identifying sensitivities to foods and meds.

We participate in life or athletics, we fuel our systems, and we must recover from usage. The quality of fuel (food) and of recovery (sleep and other rest) is important. MG and other forms of autoimmunity have been correlated with a variety of potential causes that appear to work in conjunction with genetics to activate in us. It seems unlikely (and for me impossible) to believe that foods can cause or cure MG or POTS (which I think I have); that said, as an athlete, I recognize that all our choices greatly affect the quality of performance, whether that be running a marathon, or in my case walking to the bathroom or through a hallway to see a photography show, so I would think diet could greatly reduce or worsen symptoms. The MS community seems like a great resource for help with diet and gentle exercise.

I tried a gluten free diet for 2 months and so no improvement. I've always had a healthy diet, but didn't have enough variety I was lacking in intake of vitamins and mineral, protein, etc. After working a full day, I was too tired to make dinner, so I would have a bowl of cereal. I'm fortunate to have a daughter with her masters in nutrition. She helped set up a menu plan, with the key word for me planning. I have a smoothie every am. To keep it easy, I use frozen kale, org.anic frozen blueberries, 1 avocado, banana, flax seed, and a scoop of protein powder. Add almond milk. On Sunday, I try to make things I can eat during the week.. Roast sweet potatoes, asparagus,etc. Things I can add to wraps, pasta etc. I always have snacks at work ,hummus and baby carrots, nuts ,fruit etc. Now I'm changing my household over. I won't put anything on my body that isn't safe to eat.: shampoos deodorant toothpaste ,household cleaners .etc. I make a lot of them with essential oils and the old stand bys..vinegar, lemon juice, baking soda ... I started this when I had my bedroom carpet cleaned. There was a chemical smell when I went to bed. When I woke up , my mg had flared.

Seems to work for me. That and lots of sleep and exercise

Tom,

Lots to talk about as we have some experiences in common.

I too have a daughter who cannot be under fluorescent lighting.
It can effect cognitive functioning and 14% of all people have this problem but may not realize what it is. She could pass out under fluorescent lights and lose her ability to think. A lot of study has gone into this by the Irlen lens group. It is possible your daughter could be fitted with a colored lens that bends the light differently and this will have a profound effect. There are implications for accommodation in learning as well. We consulted an eduactor schooled in Irlen lenses who tested her and was able to help a great deal. You can message me if you want more information.

I too was give the diagnoses several years back of pure autonomic failiure. This was by a local neurologist. He did not follow it up with any catecholamine testing. As you know pure autonomic failure is exceedingly rare and when I first got that diagnoses felt a bit alone with that. I sought out another opinion at Mayo and when they tested me and did the autonomic testing I found I have limited autonomic dysfunction not pure autonomic failiure. I hope you have been to a center that can evaluate this with the tests that are only available at a few centers. They also uncovered a lot of other problems I did not know I had but which were life threatening.

I also have orthostatic hypotension. It is quite profound when coupled with norepinephrine surges with fushing that looked like pheochromocytoma and with a lack of cardiac compensation due to damage to neuropathways by small fiber neuropathy. The presentations can be a bit confusing. The latest research shows that guanfacine and pyridostigmine are one of the best combinations for treating the orthostatic hypotention. Mine has gone as low as 64/46 and as high as 210/165 which is partly because I have lost the pathways to the baroreceptors so have no good control of BP on my own. It is only with added meds that I am able to tittrate BP well. I am using clonidine now as an adjunct to bring mine down.

Anyway just wanted to say I understand some of the problems with this combination of problems. You no doubt have had a chance to get the autononmic and catcecholamine testing done.

As for diet...a lot of us here have dysphasia as a part of our wekaness. I used to eat a lot of vegetables and proteins and salads but even with therapy can no longer eat them. I have to puree most foods and lettuce in particular and fresh veggies are hazards. Some people juice tho and I like I said puree a lot.

Good diet is essential and helpful but rarely does it cure anything but celiac disease and allergy related problems. It can tho truly help with strength and endurance to have a diet that has the nutrients we need. Nutritionists are worth their weight in gold but I would caution from thinking there is a magic bullet for MG.

Marie

Tomken, Mestinon must do you wonders with Orthostatic hypotension and MG!

Nobody here will testify that their diet cured MG.

Believing something is helping can be quarter to half the battle sometimes...be gluten free and see how you feel if you want.

I eat plenty of food without gluten. Avoiding it completely would not make any difference.

While it may be true that certain foods can increase symptoms at times, you cannot cure MG with any special diet.

Good luck to you!

TJ

Wow! I was away for a couple of days and got a lot of nice replies.

I don't expect to get a "cure" from diet, but was interested that the young lady with POTS who started the website that I posted the link to made such a remarkable improvement by changing her diet. I thought that folks with MG and other things would have tried changes in diet and it would be good to hear of successes in doing it. It appears that I was right.

Also, if I remember correctly, I think that I have read posts about people with MG going into remission (if that's the right term). and wondered if diet may have helped them, but, I suppose, that folks who do go into remission would tend to drift away from the support group.

Hope - I think having your husband on gluten-free will be a great help. When I talked with my wife about it, she said the we have already cut back a lot and can cut back some more.

Deb - Having more than one problem does complicate trying to isolate things. I don't know if I have any food sensitivities yet, but I don't eat sweet things or use a lot of milk in the mornings. If I do, I don't feel very good for a while. I can tolerate them later in the day.

Ellinora - I think that you're right that the food and exercise choices we make, make a big difference. The best way for me to exercise to the point that my heart rate and breathing can get up without me getting light-headed is in the swimming pool. I can get a good work-out in the water swimming a number of laps and then having a arm and upper body workout with the foam dumb-bell floats. Outside the water if I walk fast or far I frequently get light-headed and have to stop and bend over, especially in hot weather. My marathon is a trip to the mailbox, about 150 feet, at a brisk pace when I'm feeling my best.

Judith - It sounds like your daughter has fixed you up with some tasty things, some that I have never tried. Your descriptions remind me of some of the ones on the web site that I linked. While I don't know of any food sensitivities, I have a pretty strong reaction to sandlewood candles and some perfumes.

Marie - Thanks for the info on florescent lights. I sent the link for this page to my daughter so she might benefit from the info.

I had been originally diagnosed with orthostatic hypotension and prescribed Midodrine, which helped. After a few years I talked with my family doc about trying to find the cause and he arranged for me to go to Vanderbilt. They thought that my case was interesting enough and invited me for a two-week study. It was there that they said that I have "Pure" autonomic failure, meaning I've got it but they don't know what causes it, and they also found that I have MG as an added bonus. So, they kept me on Midodrine and prescribed Pyridostigmine (Generic Mestinon, I think). Those two meds keep me vertical an functional. When they wear off, like during the night and first thing in the morning, I can barely walk the four steps to the bathroom and back without getting light-headed.

My measured blood pressure has been as low as 50 over something and as high as 160 over something. With no medicine it probably peaks at 70s or 80s. With medicine it runs in the mid 80s to 110 over something and I feel fine. The time it measured 160 was after a long (for me) walk on a hot summer day and I really felt bad.

TJ - While I was already taking Midodrine for the orthostatic hypotension, the folks at Vanderbilt told me that the Pyridostigmine for MG would complement or enhance the Midodrine. It did. Then, on another study I was given Midodrine made by Upshur Smith and it was a lot better for me and everyone else on the study than Midodrine made by Global. So my doc specified Upshur Smith on my prescriptions. The meds usually take about 15 to 20 minutes to kick in each morning and keep me going until around midnight, if I pace myself, don't exert myself too bad, and if the weather is cool.

Well, it's 1AM now and tomorrow is my wife's birthday, so I had better stumble off to bed. Thanks for the replies

Tom

There is a website called:

Eattobeatmyastheniagravis.com

They list food suggestions for an MG diet.

This book which includes nutrition for AI diseases may also be an interesting read for some:

http://www.amazon.com/Mutiny-body-running-saved-life/dp/148263158X

I feel so much better with a totally gluten free diet. It takes about two months to get it out of your system if you cheat.

If I am starving and there is nothing else to eat within 5 minutes. I cheat and pay the price.

Gluten free does not cure MG but I do have a lot more energy being gluten free.