Myasthenia Gravis and Celiac Disease…Are they sisters/brothers in the Autoimmune Family? Can diet and vitamins improve or eliminate symptoms? I think the answer is yes.

I come from a family with an Aunt that has Lupus and Reynaud’s, 2 brothers with Type 1 Diabetes, I have MG and Celiac, Husband Celiac, all 3 children Celiac and one of my Daughters also got Graves Disease right as we caught the Celiac Disease. We saved her thyroid by diet, vitamins and on meds for one year. She is totally cured from Graves.

I am not an expert on anything, I just read and draw my own conclusions which may or may not be correct. I started reading about blood related problems back in 1991 when I was dx with Leukopenia which is low white blood counts and then Thrombocytopenia which is low platelet counts. Then graduated to Fibromyalgia and then Axonal Neuropathy and then B12 and vitamins and then Myasthenia Gravis and then Celiac Disease and then Holistic Alternatives.

I think reading about how to get healthy is the most important thing you can do. I once read a Holistic Cancer doctor who said it is more important to read about ways to improve your health for 30 minutes a day rather to read about diseases. Of course first you have to figure out what is wrong with you…but if you keep to the idea of, “I know something is wrong but How Can I Fix this”…rather than please give me a pill to make this all go away (and the pill way is what I really wanted in the beginning until I had reactions and realized my body could not handle drugs)…well, you may just be able to fix a lot of things that are happening to you.

Here are the people I read online They are all interesting with exciting ideas to read
1. Started with Rose and MrsD, and DogtorJ on BrainTalk and Neurotalk
2. JCC/Cara and Annie over at GlutenFree and Beyond
3. Dr. Mercola he sells things too but he has been very helpful to me and very eye opening to mercury fillings, GMO, hormones, raw milk, vitamins and more
4. Mike Adams Natural News…he may be a little over the edge for some but he really keeps me up on all the latest vaccine, food vitamins, and holistic cancer treatments which I read because if I am ever in that situation…I want to know my options now and not be frightened into doing something I don’t want to
5. Dr. Carolyn Dean the Magnisium Holistic doctor
6. Dr. Cannell Vitamin D newsletter
7. Dr. Mark Hyman and Dr. Rodney Ford talk a lot about Gluten Sensitivity and how almost everyone should be Gluten Free…not just Celiacs.
8. Dr. Oz on TV…he is not perfect but he is making people rethink what you eat and drink, and is helping you find alternatives to drugs by using herbs and vitamins

I think also…you have to realize that…I was not born this way so what suddenly caused my body to attack itself. Am I causing this? If so what can I do?

So in order to fix your body, you have to understand what is going on.

More than likely most people with autoimmune diseases probably have a leaky gut.

What is a leaky gut?
Leaky gut syndrome is a condition where the small intestine allows food protein to enter the blood stream. Autism, allergies, inflammatory bowel and autoimmune conditions can be linked to this problem. So, in other words, say you are eating a nice piece of whole grain bread and feel just fine…but in your small intestine…there is a war, it is saying …Wow this gluten is too much for me to handle and the toxic protein starts banging against the Villi (small fingerlike lining) inside of the small intestine. Soon you have little holes that let the bad toxins in your small intestine OUT into your bloodstream. The bad toxins never make it to the large intestine to be disposed of.

So, now we have toxic foreign proteins that are looking for homes. Some go to joints and you get Rheumatoid Arthritis…some go to muscles and nerve receptors and you get Myasthenia Gravis….some go to Pancreas…some go to the skin….some go to the Brain…and on and on…..and the next thing you know you are creating antibodies to fight all these toxic proteins

But why is our food suddenly damaging us…well, our gluten is not what our ancestors ate. Around 50-60 years ago there was 5% gluten in our food…now it is 50%. Our bodies were not meant to eat this type of gluten whether you have Celiac Disease or not. And along with gluten we are getting the GMO (Genetically Modified Foods) that contain pesticides….. meat that contains who knows what…and we spray our lawns….spray our fruits…drink synthetic sugars….eat foods full of sugar and high fructose corn syrup. Sugar causes inflammation. Gluten causes inflammation. Dairy causes inflammation. If you just cut out gluten, dairy and Sugar you might be amazed at the results.

So now you kind of know what might be causing your problems.

Now you have to change your thinking…which is very hard especially for the undiagnosed….I know because I thought the same way…I wanted a diagnosis…I needed a diagnosis…so people wouldn’t think I was crazy….I wanted a quick fix too

Then you have to say to yourself while trying to get a diagnosis…OK…I really don’t want to live this way anymore so I have to do things to get better…just say you have MG…who cares if the doctor thinks you do…you know your are sick and you know you are not crazy and you know you don’t need psych meds..

Now realize I am not against taking drugs as my daughter needed the help with Graves and my mother needs something to help get her to the point of healing herself and I think the right drug could be helpful. But remember the drugs do not cure the disease they only lessen or stop the symptoms only to have them return.

So, once you get stable then I feel it is time to evaluate your health…eating habits…sleeping habits and try to modify them so that you might be able to get drug free and stay drug free and get back to health or semi health. Sleep is probably the 1st that needs fixed but without changing your diet it may be hard to do. A solid few hours of sleep fixes so many things. How many stay up late to read etc on computer and then wake up too early…feel totally exhausted by 9am…or have to struggle to get out of bed at 7 or 8 am. This shouldn’t be happening. You need to get to bed by 9 or 10 read a little and sleep most of the night and wake up at 6 and be able to get out of bed and look forward to the day. I am finally at this point and it is wonderful and I think it is possible for many of you to get to this point too.

Now, here is what I did to get better…I am not 100% but I am wayyyy better…and it took a few years…it was not overnight….but it could have been faster if I had stopped all processed gluten free food …I didn’t eat a lot but still it was enough to slow down the healing.

1.I should have done what holistic cancer patients do and eat totally raw or at least all veggie, fruit, nuts and some meats and fish.

2.Instead I went to Celiac meetings eating all the GF food and always feeling worse after. Before going gluten free, I ate healthy but loved pasta. I was addicted to pasta. So I substituted Rice pasta and it was not bad at all but it kept me passing out from a major drop in insulin levels after I would eat it. So, Rice and Rice Pastas where not helping regulate my insulin (I do not have diabetes of any kind) My antibodies to gluten continued to be positive for 7 years even though I was very strict about no gluten in the house but no matter how careful you are Restaurants just didn’t understand even if they said they did. Now 8 years later restaurants and manufacturers are trying and are better…. but still GF processed food is probably worse than regular processed food because of the extra sugars etc. so that is why you should not do as my mom who tried going GF and bought all the cakes, cookies and anything that said GF…she did try the diet a year or so ago and I know would then go out to eat and eat the real bread then she said her BP got worse…hmmm and diet wasn’t good…well that was because she really wasn’t gluten free.

3.For the first few years I got better but not anything dramatic because I had a lot of healing to do and was not doing it properly. I also had a lot of damage in my brain..muscles…eyes. Also I was very stupid to let them give my a dpt shot when I cut my knee open with a rusty nail. This put me back 2years because my body had to fight the toxicity off. If you can help it never get any type of vaccine or flu shot. The flu shots still contain mercury…you don’t need any more brain fog and that is what it did to me…suddenly I am putting the peanut butter in the fridge.

So to change I had to change my brain…I eat to Live……Do not live to eat..living to eat may make you feel better emotionally but in the long run you pay for it.

Ask your doctor to check all your vitamin levels, hormone levels, and anything else you can think of so you know where to start. If not just start with basics and add things and see if they help.

What I take daily and may not be right for you but gives you ideas.
B12 Methylcobalamin 5,000 sublingual ..Used to take daily now maybe 3-4x a week
Folic acid 1 x day
B 50 complex everyday
Krill oil everyday (Dr. Mercola’s brand)
D3 with C, K, Magnesium and zinc (Revolution-D from SAN) 5,000 IU a day (used to take Carlson 10,000 5x a week)
Probiotics…very necessary for any one with autoimmune problems. Right now I am taking Dr. Mercola’s but others are good from store. Yogurt is not good enough.
Chlorella about 5 pills a day to help remove toxins like mercury, pesticides etc
Recently added
Turmeric to fight cancer cells 1 x day
Ubiquinol/CoQ10 important for immune system and cardiovascular
Epsom Salt bath 1-2 cups in water every night helps with sleep and gives me magnesium
Chamomile tea with 1 teaspoon organic tart cherry juice concentrate every night helps with sleep

What I eat now and it may not be right for anybody…but might give you some ideas. PS..my husbands cholesterol when down on this diet.

Breakfast
¼ cup organic roasted cashews (these are very expensive but filling)
3 Medjool Dates
½ cup of coffee

Early lunch
Either leftovers or
Smoothie made with 1-2 banana or 1 avocado, 2 handfuls of Kale, organic fruit if possible I use a little of these (frozen strawberries, blueberries, mangoes, and red raspberries) I throw in some flax, ground raw almonds and chia seeds. Add ½ lemon juice (good for liver) and 1 small bottle of coconut water or regular water or almond milk. If you have a good blender the kale will not be found…LOL..I have a Cusinart Powerblend 600 that was not expensive and grinds everything to a smoothie.

Dinner Snack my only bad stuff
3 to 6 oz red wine
Homemade humus or salsa or guacamole or cashews

Dinner try to stay away from casseroles and keep it simple.
1. Always start with the biggest salad you can eat as it fills you up and is good for you if you do it right
Big salad made with dark green lettuce and in summer made with home grown kale..add lots of ground carrots, ground raw almonds or ground walnuts, and other fresh veggies and sometimes fruit like organic strawberries…I recently changed to organic as strawberries have the worst pesticides as do apples.
2. Next I always steam 2 batches Broccoli or 1 Cauliflower. My husband uses hot sauce and I like it with olive oil and sea salt
After eating these 2 things you don’t need a lot of other things but some ideas
3. We have friends that breed beefalo so we do some of that meat along with wild cod and wild salmon add a sweet potato or winter squash and you are good to go
4. My husband likes his carbs but last week I made the pasta and I didn’t pass out but did wake up jittery and couldn’t sleep. So we try to eat more quinoa which doesn’t cause the reaction.

My chamomile tea with tart cherry concentrate 1 hour before bed
Epsom salt bath
Good Night

Hope this helps someone…and apologize for length.

What have I fixed: This mostly happened last year
Sometimes I have a bad day or 2 but mostly I am great.

• My eyes never droop.
• I can climb stairs without fatigue.
• I can ride a bike up to 12 miles on a good day amazing for me.
• I can run a little with no stitch and feel good when I do! Another first
• I can remember things long enough to write down...most of the time.
• Not passing out when I eat dinner.
• Never tired during the day...can go all day long without resting.
• I am getting some muscle back in my arms.

Hello Llonghair....

I would imagine diet and vitamins improve myasthenia gravis symptoms - if its not Myasthenia Gravis.

I would also imagine it is difficult to predict those specific effects on an already fluctuating disease.

I had M.E many years ago and whey protein worked wonders for that. But a few years later only during a Mestinon trial with Mestinon taken on symptomatic basis was there an effect on the newer more stubborn myasthenic symptoms which were to last quite a number of years. I went through my worst years without any medication and during that time desperately toyed with a number of dietary interventions which unfortunately had no effect whatsoever.

I also had interesting experiences with observing change in the roles of sleep, rest and exercise over the years. And because of the extreme slow progression of mysthenic weakness followed by similarly progressive remission, my opinion is that myasthenia gravis symptoms have a life of their own. Depending on severity, diet and vitamins may play an assisting role - but will do very little to get you out of an exacerbation. I also do think that the overall course of the disease, can only be altered by 3 things: thyectomy (not all), spontaneous remissions, and drugs, if appropriate to your specific MG profile.

What a fantastic story about your own research and your own journey to health. Your research and dedication to finding your way to better health is inspiring. And I agree there MUST be some way out!

Good luck with your continued success in the future


Anacrusis

Llonghair, I cannot thank you enough for your post. I was diagnosed in August (symptoms since January 2012) and instantly went where you did with your thinking. I am seeing a neurologist so I can keep getting my Mestinon but in the meantime, as my symptoms are very slowly progressing, I am doing my best to clean out my body and get things balanced again. I am seeing a naturopath who has me on a similar list of vitamins and minerals as well as an herb or two and who gives me acupuncture treatments, and I am seeing a holistic psychiatrist who is treating me for leaky gut (and helping me adapt mentally to the lifestyle changes I'm having to make).

I am also experimenting with juicing and I was amazed by how good I felt when I did it for a week. (If you haven't seen "Fat, Sick and Nearly Dead" I highly recommend it! It inspired me to try juicing.) I am going to do it more often and for longer periods. It produced phenomenal results, at least in the short term.

Like you, I want to think about health instead of "being sick."

Another movie that inspired me is "The Secret." It's over-hyped and sensationalized but the message is powerful nonetheless: Energy flows where thoughts go. If you think about sickness (even if you think about NOT BEING SICK), you are still drawing sickness to you. But if you think about health, you are more likely to drawing THAT to you.

I don't sleep as much as I should but mostly it's from worrying about my MG. I read posts here that just upset and frighten me, so your post gave me hope and really thank you for that. I am going to keep believing that my body will reward me for treating it well!

Well, you have really outdone yourself. This is a fantastic overview of what you've been doing to help yourself. Thanks.

Would you mind a suggestion or two? It's actually better to start the day with more calories than you end up with. Your breakfast is a little on the low end. There are some great quinoa cereals and other alternatives for a high fiber addition to help keep your metabolism going. And many people recommend more small snacks/meals throughout the day, such as 5 - 6. It helps keep blood sugar/insulin on a more steady regimen.

Chlorella is good and helps repair DNA but to get toxins out, Zeolite is actually better. Do not try anything without talking to your primary doctor first.

Cinnamon is just as good as tumeric for inflammation and does not have the blood thinning properties.

Patients with any disease can be low to high "functioning" and I agree that how you take care of your body is key to that. That is my focus as well. When I don't take care of myself as well as I can due to being worn out, I feel even worse. I NEED vegetables every day.


Anacrusis, I have to disagree with this statement.

Anything that improves the immune system will have a positive impact on a disease. It's not unlike when you have an allergy to a food you don't know of. It can cause leaky gut and then more immune problems. There can be a "cascade" of worsening when there are triggers making someone's overall health worse. Removing those detrimental ones and adding beneficial ones can improve someone's overall health and, therefore, MG.

A case in point is a B12 deficiency. You need B12 to make choline. You need choline to make acetylcholine. The body is one big biochemical factory and you can't disconnect one aspect of health from another.

Another case in point of diet impacting MG is having too much of a nightshade food at once. Or even too much caffeine. They can either make MG worse or better.

No, so far there is no known way to cure MG by making health changes like more sleep, better diet and some exercise but it DOES help. It can make life with MG better. It gets harder when the immune system, like mine, has been messed up since birth and has more than MG to contend with.

Llonghair, I appreciate the effort you made to put this information out there. Thank you.


Annie

Ah, I didn't read your whole post (it's waaaaay too long, how on earth did you manage that?!), but I just wanted to add my own, (weird ?) opinion.

I do not believe anything I did gave me this disease. I do not believe I can control my symptoms by diet or anything. Maybe this is the way things work if you have mild problems, if you do not have a disease (but a diagnosis based on your symptoms - which isn't always correct but how can you say?) or if you have indeed a diagnosis but which is combined with some nutritional problems. This last thing isn't so weird: for example, it is very possible to be in a poor nutritional state if you have swallowing problems. I believe this last thing is often the case.

And of course things will get worse if you have a "hidden allergy" which triggers you immune system over and over again. But mine are never really that hidden, of I eat a nut, I'll be in the hospital on no time

However, how things worked for me: I have always lived a very, very healthy life. I was very active, had enough sleep, drank herbal tea, ate all kinds of fruits and veggie's, never ever smoked, drank, ate fast food or anything. My identical twin sister is a different story: she started smoking at 12, never did any exercise and her only veggie's she got was on her pizza's. She's still working properly, I am very sick. I've been to all kinds of holistic things and whatevermore, but it never worked.

Anyway, hope I don't offend anyone, or didn't understand you correctly (again, it's sooo long!). Of course there's truth in what your saying.
I just want to say; I've tried, and well... I just don't think it's fair to myself to think, "did I do this to myself".

I agree. Stuff just happens. It is not fair to blame ourselves or for others to blame us. I didn't really get the whole blame thing out of any of the posts, but I do know that some people feel that way.

What we eat.
What we think.
What we do.
Where we pray.

A good attitude can help with overall health, but we didn't do this to ourselves.

I appreciate Ravenclaw's reaction. MG is a tricky beast. It sometimes goes into remission for no apparent reason. Llonghair, you are very kind to share what has been so beneficial to you. My cautious response comes mostly from some bad experiences I've had with acquaintances who believe that every illness can be treated with nutrition (which I understand is not what you're saying). I certainly believe that bad nutrition can make an illness worse, especially if there are sensitivities and allergies involved--and that fixing the problem can therefore improve things. But I know people who believe that all diseases are caused by bad nutrition, and what follows from that premise is that if you're sick, it's your own fault. Again, I know you're not saying that.

I especially want to recommend caution when it comes to Dr. Mercola. He's the guy who published an article claiming that AIDS is caused not by the HIV virus, but by the immunosuppressant effect of the stress of being HIV positive. http://www.omsj.org/issues/can-azt-a...aids#more-4606 This is not a serious scientist whom I would trust to give me advice about how to make my immune system function properly.

It took me a while to find the article, because he's removed it from his website, and replaced it with an ad for spirolina (so all links redirect there). I had a friend who brought me a container of that stuff once. She was all excited--look how much protein it has! It was indeed amazing. In fact, according to the label, there were more grams of protein in that container than there were grams of spirulina. Truly a miracle food! I don't know if Dr. Mercola's brand of spirulina overcomes the basic laws of physics in this way, but he does claim it inactivates the AIDS virus. http://articles.mercola.com/sites/ar...-heard-of.aspx

I also want to recommend caution when it comes to making decisions about flu shots and other inoculations. Yes, they're risky. What needs to be kept in mind is that the infections they prevent are also risky, especially for someone with MG. There's no risk-free decision. Infections tend to trigger MG crises. For someone who already has trouble breathing, the flu is thus a triple danger. Many of us here are on immunosuppressant drugs, and so the flu is a quadruple danger to us. These dangers have to be balanced against the risks of the shot itself.

One more note of caution: I also have Graves, which I put into remission by taking pills to suppress my thyroid (without changing my diet). My longest remission so far lasted five years. Anyone who has had Graves in the past should consider herself "in remission" and not "cured," so as to be on the look-out for recurrences, which are very common. Mild hyperthyroid symptoms are subtle, and might not be noticed, but can really wreak havoc with your health. Anyone who has ever had thyroid trouble should have regular blood tests.

OK, done being a wet blanket! Congratulations on your improvement. I hope that you inspire me, and others here, to try some of your ideas. As for me, I have a chronic house-guest (I've given up hoping for a cure, but I would enjoy a remission) with a passion for gardening, and I'm going to make him earn his keep this summer by providing me with tons of fresh, organic vegetables. If I go gluten- and dairy-free at the same time...um...how long do I have to do it before I'm allowed to revert to my old ways? Just asking.

Abby

I just wanted to note that I have tried curing myself of my chronic house-guest with good nutrition, but so far it hasn't worked. It works beautifully, though, on my daughter's visiting boyfriend, who goes out to Taco Bell whenever I treat him with good nutrition. He keeps coming back, though.

Abby
cracking myself up

I kind of agree with you on this one. My own progress out of 5 years of myasthenic weakness happened without medication,
additional positive thinking, diet, vitamins etc - It just happened. The story of your identical twin is fascinating and also very important. Unfortunately for you your previously healthy lifestyle did not prevent future myasthenic symptoms.

Thanks always for sharing, Ravenclaw.

Anacrusis


I also cannot help but find what people have discovered about this topic interesting even though my own experience doesn´t match.
To know how to somehow fine tune your health via nutrition and your own immune system sounds like quite a fine art especially if in combination with medications and the unpredictable nature of MG - Quite amazing, really! It has always been hard work for me to cut out the junk and eat with better awareness but now I might just go and get my brand new juicer out of its box in the basement where its been laying unopened for at least 6 years! And I can now even peel my own vegetables again

You know, in spite of my notes of caution, I would like to try some radical improvements in my diet. This is not something I could handle alone, because, dang it, I have a disease that takes away my energy, and radical diet changes require lots and lots of energy--at least in the beginning. But I just talked to my college-age daughter, who has her own health issues, and we decided that we can manage it together, for May, June, July and August at least. If we feel remarkably better we'll be motivated, and have the energy, to keep it up.

We are already vegetarians, but we're planning to go vegan and also gluten-free. We'll eat vegetables, legumes, fruits, lots of nuts, and olive oil. Kale, right? We're supposed to eat kale. And B-12 supplements for sure (sublingual). No sugar or sugar-substitutes. Quinoa for breakfast. Anything else? No ultra-processed "veggie burger" soy junk. We're going to try to be "ingredientarians" (I made that up) which means we eat one-ingredient foods, or foods that we make from one-ingredient foods. The point of that is just a rule of thumb to get us away from over-processed stuff. This will be a grand experiment.

What do you think? Is a four-month trial enough? Anything I should add, or watch out for? I don't think I can get myself to try dietary supplements besides the vitamin B-12 (and D, which I take already). I'd rather try to do it by eating the right stuff. Am I missing essential fatty acids here? Flax seed is awfully gassy, and I want to avoid fish.

Abby