Hi Folks-

I haven't posted anything over the past many months and I have only infrequently been reading the forum during that time. I had been waiting to be sure that the path I chose was going to be long term successful before posting again with an update. I feel confident that my disease is gone or at least under control and I wanted to let you all know what I have learned.

A very quick synopsis for new members and for those older members who may not remember. I am a 57yo male who woke up July 10, 2009 with a very severe form of bulbar MG. In retrospect I believe I was also suffering from very mild general weakness although at the time I had attributed that to not being able to eat. All blood markers were positive for the disease and the diagnosis was confirmed by two different neurologists. They both had prescribed mestinon as a first step, with the second neuro suggesting that I was a good candidate for prednisone therapy.

In my mind things don't happen without reason. I therefore believed that a certain set of conditions must have occurred to bring this on, therefore a certain set of conditions could make it go away. Naive you say? Maybe. But I decided I would try anyway as, like all of you, I did NOT want this disease. So - against all protests from friends, family and doctors I decided to try and identify and treat the cause rather than take drugs to treat the symptoms. I never took any mestinon, prednisone or other treatment for the MG. I did not want to mask the symptoms because I would then not be able to tell if what I was going to try was working or not. Yes it was scary at times, especially with two neuros telling me I may wake up dead if I don't start taking meds. At the time though it didn't really matter. I had made up my mind that I was not going to live with this disease - one way or the other.

Suffice to say, there was an ungodly number of hours spent researching and reading. There was ample evidence found that diet, nutrition and supplements play a key part in this disease as well as many others.

Here is what I learned in MY CASE. I had been unknowingly suffering for many years from a gluten intolerance. The symptoms were so mild that I really didn't think that there was a problem. However, looking back it is now clear that my intestines had been mildly inflamed for a long time and that I was not absorbing nutrients properly.

Research showed that the two key players in the immune system are the thymus and the thyrioid. The thyroid requires iodine to function properly. The thymus requires manganese to function properly.

I stopped eating all products that contain gluten. I started taking manganese and iodine supplements. Other nutritional changes were made. In four months of very slow improvement my symptoms finally disappeared and I have been symptom free since then. Obviously my gut healed up and I was now able to absorb the nutrients necessary for proper immune function. Teresakoch(sp?) is right on when she says that gluten intolerance may play a part in MG.

In a couple of weeks it will have been a year symptom free. In addition my joint pain and swellings have gone away, my nails are stronger and I even grew a little hair back on my head. All by not putting into my body what it didn't want and giving it what it did need.

Simple - although it didn't seem like it at the time. Do a search for my earlier posts for more details and a better understanding of what I went through. Pretty obvious that a lot of times I didn't know if the things I was doing were doing any good or not. Patience, perseverance and prayer saw me through.

I am not the only one who has had success in doing this. It is POSSIBLE that some of you may also have success and that is why I am posting this one last time. Do your own research and make your own decisions. I - and others - are living proof that MG can be defeated and it is so simple! But you must be consistent and patient. There is no magic 24 hour pill.

I have a question. I always thought I had a sensitivity to gluten due to the fact that when I eat any type of grain my nose would start running. It would be just like I had a cold. So, I went out and bought a lot of reading material on gluten intolerance. I was diagnosed a few months back with MG. What made you think that you had intolerance to gluten. Just curious because I am trying to figure out how to go about it. A few years ago I went to an allergy specialist to see if something was going on and paid him $250 cash up front for him to tell me I was depressed. He didn't want to even talk about my problems only my life's problems. So I am like you, I thought I would venture out and research it myself but my perservance is very low. I give up easy. I am glad you are well. I know that took a lot of hard work and perservance. Blessings to you. busybusy

Hi busybusy-

In my case it was more after the fact that the problem became clear concerning gluten intolerance. Meaning that my symptoms were so mild and vague that there was no clear cut association. Don't get me wrong, I DID suspect that there was a problem for twenty years or so but nothing was so bad as to make me want to quit gluten to find out for sure. Always thought it was just too damn inconvenient to stop eating gluten containing foods to find out for sure. What a fool I was! I would notice that if I ate lots of homemade whole wheat bread that my shoulder joints would ache a bit. As time went on more of my joints got chronically worse but I was attributing that to arthritis of some form as both my dad and his father suffered from it in their mid fities up. Interesting that you mention a runny nose. When I was younger it didn't bother me, but as I got older I noticed that when I drank beer it would make my nose stuffy. As if the soft tissues were swelling closed. There's gluten in beer.
When I came down with MG and realized that my immune system was wacky/overloaded/ out of balance that's when I decided to stop eating/drinking anything I thought my body was interpreting as invaders. Within a week I noticed that my bowel movements had changed(for the better) and that my joint pain/swelling was diminishing. That was the only immediate diet change I had made so to me there was no doubt that the symptoms were gluten related. Oh and in addition my 30+ yr chronic sinus problem has improved by about 90%. I no longer get my regular sinus infections. When I think of all the money, doctors, drugs over the years I could have avoided by giving up gluten 20 years ago..........

You've obviously read up on celiac disease/gluten intolerance, so you know that symptoms can be next to nothing all the way to life threatening and can mimick symptoms from countless other diseases. That's why it's so hard to diagnose sometimes.

As for the inconvenience of giving up gluten? Hah! It's not that big of a deal. Easier than I thought and I'm better off for it. I do miss some of my favorite foods that I can never have again, but it's well worth it to be disease and pain free. No big deal. Anyone can do it. You just have to WANT to. Hang in there.

Do you know if one can be gluten intolerant yet still "pass" gluten bloodwork testing?

Thx

Aries,

I am glad to hear an update from you and happy the MG symptoms are gone.

I have had a lot of improvements from diet changes, but I still have MG symptoms.

For about 3 months I have been avoiding most gluten containing foods and I noticed that I felt better. Recently, just to test this out, I ate some bread and other gluten containing foods. I had a very bad allergic reaction including scratchy throat and itchy skin, even a rash on my chest, back and neck (never had that before from bread). And my MG symptoms got really bad. So I am going back to gluten avoidance.

Also, I stopped using shampoo and soaps because they irritate my skin (I now use baking soda and vinegar). Now, whenever I test out using soap or shampoo, I get extremely itchy skin with welts. Same reaction with hair spray. I never got this reaction before, only a slight itchy feeling. I am never using hair care products again.

I am currently figuring out other things that irritate my body. In the past I have been tested for allergies, starting at about 3 years old and most recently about 7 years ago. Every time the doctors said that I was allergic to just about everything they tested for. I was given a list of the worst reactions so I could avoid these few things and told that since I was allergic to just about everything that I was going to have to experiment with the rest and eat the things that bother me the least.

So now I am eliminating things from my life that cause allergic reactions, no matter how slight. It is difficult to avoid some of these things, but I try.

Your words give me hope that this process may help reduce my MG symtoms further. I am currently not feeling so great because of the bread and soap, it is a slow recovery from being exposed to these things. Also, I am extremely allergic to cinnamon and just about every store has some during the holidays, just one breath of that stuff and I get dizzy or worse, now it triggers MG symptoms as well as runny nose and itchy skin. (Once I completely lost my vision and balance and had to have someone lead me out of the store, I almost passed out. I've been to the emergency room from cinnamon reactions before I discovered the allergy.)

I have felt so bad recently that I started eating not-so-healthy foods(canned & packaged food & not many fresh food), too tired/weak to shop and cook what is best for me...and this has had a huge impact on my symptoms. I think I'll be avoiding the packaged food even more in the future. Time to go buy a bunch of vegetables and fruit. I think I should plan a week of meals so nothing gets wasted...it is a lot of work this eating right, it shouldn't be, but it is...the junk food is so much easier to buy and prepare.

I have a question. Does anyone know of a website or program that helps track nutrition? I have looked and it seems all of these sites are for dieting and focus on calories, fat and cholesterol...I don't care about those items but want to be sure I am getting all my vitamins and minerals. I don't like taking vitamins and I just haven't found the energy to keep track of this manually. I am considering making one for myself, getting the information for one food at a time, creating my own database.

Ok, I am rambling on and on. Aries I think you are on to something. It may be difficult to identify things that make our MG worse/better since we are all unique in our situations, but it is worth a try.

I am thankful for the improvements in my MG symptoms, I am so happy that I can see and walk most of the time...

Please check in for updates in the future, I hope you remain symptom free.

no doubt that we are what we eat, and that nutrition and enviromental factors are under appreciated as causing diseases.

no doubt that there is an association between celiac diseaese and myasthenia (eg-the prevalence of people that have both is much more then would be expected by chance),

and no doubt that celiac disease can have unusual presentations (including neurological symptoms with very minimal gastrointestinal symptoms), as can myasthenia.

no doubt that both disease are underdiagnosed because many patients do not fit the "box"'.

no doubt that allergic reactions can lead to worsening of autoimmune diseases (myasthenia included), and better control of the allergic condition can also bring better control of the autoimmune disease.

yet, one has to be careful and not create a new "box", which may lead to serious errors.

what I mean by that is that not all people with myasthenia have celiac as well not all people with myasthenia have allergic reactions. and some do need proper medications (with all their inevitable side-effects) in order to control their illness.

myasthenia is a serious condition, with a significant morbidity and mortality if not adequetly treated. it could be reasonable for someone with relatively mild symptoms, to experiment for a while, but for some it could lead to serious consequences.

telling people that instead of taking medications with all the side effects, they could just use some form of diet or life-style change, can be dangerous, as you never know who is going to read this.

there was a very sad story of a young woman who had a liver transplant and did expetionally well, but after a year she got tired of taking the large doses of immunsupressants required. she came across a story of a patient who stopped taking all medications and did very well. but, she decided to do it on her own, and very soon after she was admitted with severe liver failure due to acute rejection, and died.
http://www.nytimes.com/2008/10/10/health/10chen.html

I am telling you this, because I am sure you mean well, and trying to help people, but it seems that in your case, you had undiagosed celiac disease, which caused some or most of the myasthenic symptoms. taking a similar approach by someone who does not have the same problem can be hazardous.

in a way your illness was not properly diagnosed and the treatment you were offered was not the correct one. just like my illness was missdiagonsed and the treatment I was offered was not the correct one. but, this does not mean that this is the case in all patients. patient care should be individualized, and ideally based on a good physician-patient relationship, in which all options are discussed, and the best one is eventually chosen. combining the patient's understanding of his/her illness with the knowledge base and experience of the physician.

you and I want to help others understand the mistakes that were done in our management, so they will have a better outcome, but at the same time we do not know who is going to read it, and what his/her interpertation is going to be.

I was off a lot of foods for years before Mestinon; it was horribly painful to eat them. Mestinon let me eat them.

Being off the foods didn't heal me at all. (And in addition, when I could barely breathe in the heat because of disease, I wasn't eating anything for days and I wasn't cured.)

I knew something was wrong with me because I had so many restrictions even when I could eat. On Mestinon, I can eat a much more varied diet (I'm still a little careful but there's a big difference).

Not that I'm going to write a thread anywhere about how Mestinon is the cure-all for all food problems (and Prednisone is pretty good too) but I would actually wonder if someone on Mestinon from minute one of illness (or from birth even) is going to test positive for celiac ... and I would expect that people who don't get relief from food problems despite being on the med, may test positive for food problems because of a failure to have properly controlled (including using medication) disease for a prolongued period...

(And P.S., I don't have MG but with what I have, Mestinon does an awful lot.)

Hi Mick2-

Inasmuch as no test is 100% reliable I would say that yes it is possible, but I don't know how probable. From what I understand the intestinal biopsy done after a long gluten load is considered to be the ultimate diagnostic test. This is based on what I have read and I have no personal experience with tests for celiac disease.

A quick check before posting indicates that the blood tests are roughly 91%- 95% accurate.

No one knows your body better than you though. If you get negative reactions of any kind when you eat gluten and feel better when you don't eat it for an extended period, then it would appear as if there is an intolerance of some sort. At that point it wouldn't matter to me if I had a negative blood test, I would know myself that there's a problem with it regardless. I'd stop eating gluten to see if the issues clear up. If they do-great! Problem solved. If they don't- then further testing may be warranted.

What you do for yourself of course, is always your decision.