I know that many people who have MG also have celiac disease, or at least a gluten sensitivity. I also know that in minor cases, the symptoms may be subtle. I don't have any of the digestive symptoms of celiac, but I've been thinking for a while that it would be good to do a gluten-free trial. So I'm doing six weeks (yep, it's Lent) without gluten.

While I'm at it, I'm cutting way down on salt, and really de-emphasizing even non-wheat grains. I don't eat meat anyway. That means I'm eating mostly vegetables, fruits, beans, nuts and seeds, and some cheese.

How do I feel so far? Well, it's certainly not helping the myasthenia. It took two big strong men (husband and son) to get me to the car after church today. On the other hand I'm losing weight, which is a good thing because that's less of me for my weak muscles and strong menfolk to drag around.

I know that it can take a long time to see the effects of a gluten-free diet, and it's been less than a week, so I'll stick with it.

Abby

Abby, from my experience you feel worse before you feel better. I have mixed experiences from elimnating gluten but I know it bothers me because every time I eat it now I get itchy bumps inside my mouth, and a few days later I get really bad skin problems. It is difficult going gluten free. I did see an improvement in my MG symptoms about 3 months after going mostly gluten free, and a huge improvement in digestive system issues. I'm now attempting to go completely gluten free.

Sounds like you are eating very healthy, too.

I hope eliminating gluten is helpful for you. Please share your progress.

I wish you would've gotten tested before you went GF. It is nice to know if you have CD (celiac disease) or not. It helps in being more vigilant about going GF.

If you have CD, it does damage to your small intestines. So seeing any kind of improvement would take time, time for the intestines to heal. Also, recent studies suggest that it can damage the brain as well. Everyone would have different results based upon their starting point. And some people heal more quickly than others. You're immunosuppressed and that does have an effect on healing.

It can be hard going GF but if you are basically vegan, then it's easier. There's still a lot of cross contamination in products too. Our FDA allows a certain parts per million of gluten in products and they can still say they are GF. There's hidden gluten in things like toothpaste, shampoo, lipstick, etc. that can cause the CD antibody to occur. It's not only what's digested but what comes in contact with our skin and is absorbed. So to go truly GF, you really have to look at so many aspects of what you eat and come in contact with.

I hope it does have a good effect for you. If you need any sources for GF foods or ideas, let me know. I've had CD and been GF for over 7 years now.

Annie

Thanks, Annie. I thought about the celiac test, but it really seemed unlikely to me that I'd have full-blown celiac disease with no digestive symptoms at all...I mean, I have excellent digestion. My digestion is a thing of great beauty.

DesertFlower, I guess my six-weeks' trial isn't really long enough. But I'm thinking of extending it because although I don't notice any MG improvement, or any other miscellaneous health benefits, I discovered to my great surprise that I no longer crave foods. I don't crave sugar or salt or bready things. This is very weird, and definitely a good sign.

Abby

That's the fallacy - MOST people with CD DON'T have digestive issues. It's called "Silent" Celiac Disease; 97% of people who have CD don't know that they have it because they don't have the "typical" symptoms of CD.

The CD groups are doing a good job of getting the "facts" out to doctors, but it's still in the early stages - it's hard to change what you've always "known", even though newer information is out there.

Our daughter was diagnosed with CD in 2008, and we've been GF ever since. It gets easier as time goes on, and you become more accustomed to eating GF.

The reason that you don't "crave" foods any more is because your body is finally absorbing ALL of the nutrients that you are taking in. I lost 40 pounds without changing anything OTHER than eliminating gluten. (When I started on steroids, I gained some of that back, but my "shape" is different - I seem to have more muscle mass than fat now)

And I always tell anyone who will listen that any "diet" that lets me eat Snickers and drink Coke is A-OK in my book.....

Sigh. I was afraid of that. Well, it must have some symptoms, right? My myasthenia's not better, and the only other health problems I can think of that I have are allergies, to dust and mold mostly, I think, which I will be watching, and a tendency to get migraines. I'll be watching that, too.

I have had different vitamin levels tested, and they've been very good. I think if I had an absorption problem, my levels would be lowish. But who knows. Too bad we can't have health problems when we have the energy to deal with them, right?

My theory about the craving is that since I'm eating much less carbs (especially less refined carbs, including very finely ground whole wheat), I'm not getting such ups and downs in my blood sugar. And I'm not craving salt because all the extra room in my daily calorie allotment lets me eat tons of potassium-rich vegetables. But, who knows. Once I thought I had athlete's foot, but the anti-fungal cream didn't work at all. So I tried the powder, and that worked! Turned out I didn't have athlete's foot at all; I had chillblains (or possibly Raynaud's), and the powder meant I had to wear socks, which kept my toes warm. Let that be a lesson to me. Science is tricky stuff when you have a pea-brain like mine (I mean, imagine not knowing enough to put on socks when your toes are cold. It's a wonder I get through the day).

Abby