[redtail]

Hi all
Just wondering as I have come across a lot of gluten free info lately regarding MG.
My questions are how did it improve you life after going gluten free, and how long before you found any improvement???

Any thoughts input would be greatly appreciated
thanks
Kate

[Ken0710]

Hello Kate,
I have not tried any diets but at my last appointment I asked my doctor aout it. He said although diets like that are good for overall health, it has nothing to do with improving the MG issues. It wasn't just what he said but how he said it as well. It seemed as though he really felt it was not going to help and stated there is no medical proof to back it up.

Having said that, I feel anything that may have a chance of making things better is worth a shot. I am not sure I will do it though as I don't think I will have the discipline. I a not sure this has helped at all but I thought I would let you know what the Doc told me.

Ken

[AnnieB3]

Kate, The only relationship going gluten free has with my MG is that I have Celiac Disease (reticulin antibodies). Often a person has more than one autoimmune disease.

There are those who have a gluten sensitivity and don't have outright antibodies. Many doctors believe gluten issues are on a spectrum from being sensitive to having CD.

If you get sick when you eat gluten (wheat, barley, rye and oats), then you should see either your primary doctor or a gastroenterologist. Some people with CD have dermatitis herpetiformis, a skin eruption associated with celiac disease.

http://emedicine.medscape.com/article/1062640-overview

Going gluten free won't help your MG! If you have a gluten sensitivity or outright CD, then going gluten free will aid your immune system in general. Make sense?

Celiac disease is the only autoimmune disease that has an obvious "cause and effect" where you can stop the autoimmune process by not eating gluten.

However, eating well helps your health just as eating crap food with little or no nutrients can cause you to be sick (i.e., scurvy).

Annie

[redtail]

Thanks Ken and Annie,

I have been tested for CD and came back negative. But I have decided to give it a try when I get back from my holiday to see if it improves my overall health. I eat very healthily anyway, but anything is worth a try :-)

[DesertFlower]

Originally Posted by redtail

Thanks Ken and Annie,

I have been tested for CD and came back negative. But I have decided to give it a try when I get back from my holiday to see if it improves my overall health. I eat very healthily anyway, but anything is worth a try :-)

Kate,

I have been experimenting with gluten and decided I need to get tested for CD. I don't usually have any major symptoms when eating gluten, but I generally feel better without it. I've been going without gluten (or at least mostly) for a few months and I've been feeling slightly better, my MG symptoms are more steady with less ups and downs.

Earlier today, I ate some cereal...and I feel a few things I hadn't noticed before. I feel bloated now, my belly is sticking out about 1 to 2 inches more than normal (this is new), my skin feels a little itchy, and I have more weakness than usual, I even feel out of breath, and I have a few bumps in the back of my mouth. I'm even feeling a bit of brain fog which had been clearing up since I am paying close attention to my diet.

And worst of all, I am craving breads and sweets, can hardly resist eating any sweet thing in the house, luckily I don't have much in my house. Sugar I think is worse than the gluten for me. Sugar seems to trigger allergies, which in turn makes my MG worse. I am trying to avoid most sweet things

Please understand that my troubles may be allergy related and not MG related at all.

I think avoiding gluten is a good thing to experiment with. As for me, I figure anything that helps no matter how slight is worth it as long as it is not to difficult to do.

I hope this is helpful.

[redtail]

thanks for your reply, I really think it would be worth it, in the long run to give it a whirl...

[teresakoch]

While going gluten-free won't necessarily "help" your MG, it WILL help your immune system function better - if gluten affects you in that manner. You may want to get tested for Celiac Disease first, but if you are on steroids, you may get a false negative result.

I was on a GF diet for 2 years BEFORE my MG diagnosis, so I can't really speak to if it will help or not; however, if you have OTHER problems which might be gluten-related, you will see a definite improvement in those. The change that I noticed after going GF was nothing short of miraculous....

It certainly won't hurt to try a GF diet for a month, just to see if you notice a change. The nice thing is that you don't really have to make any drastic changes - just remember that there is no such thing as "gluten lite" - it's all or nothing -

(Incidentally, I have to stay GF for life - I have the dermatological form of Celiac Disease, I carry the CD gene, AND I found out that I am allergic to wheat. I have had NO problem whatsoever staying GF - I feel terrible if I accidentally get hold of it now.....)