Wondergirl, Do you take vitamin D every day? At least 800 iu's? You wouldn't believe how many times someone is diagnosed with fibromyalgia when it turns out to be a Vit. D deficiency. Sure, it can be super sensitive nerves or hormone fluctuations and lots of other reasons since they don't definitively know the cause of fibro, but it's worth trying.

Lindie, Dr. Howard is Dr. James Howard, Jr. of University of North Carolina. Super nice, super MG expert.

Okay thanks, I could be in the 40% autoimmune then.

I do have VitD deficiency or insufficiency. At one point I supplemented a lot for months and it helps, only to an extent. I am taking it again to get that improvement back. Well, I hope I can stick to it.

Were you ever tested for celiac disease?

No? I was told that most MDs think celiac is "fake". In the way that many thing "chronic fatigue syndrome" or fibro is fake.

I had an allergist do skin prick tests and it said I only had "mild" food allergies. Wheat was not one of them. However I get migraines easily from foods, and lots of other symptoms. Definitely have issues with soy, sulfites, milk, peanuts, Bromelain enzymes, berries, probably other nuts, sucralose and probably many other sweeteners including raw sugar?, probably other dairy, etc.

I did a brief unscientific elimination test (and need to test it better but have trouble doing so) for gluten and believe I would feel a less tired on a gluten-free diet. But maybe it's not the gluten and it's simply that I get bad with high glycemic foods? (I had eaten plenty of white rice when trying to eliminate other foods because I needed something to eat. Also some people told me it is very possible to be allergic to plain white rice.)

However it seems like I am allergic to everything, and I believe it has more to do with chemicals used in processing than the foods in general?

I am diagnosed ADD and I know I have at least 75% of Asperger's symptoms (which some docs wouldn't recognize since it manifests differently in adults and females) and autism spectrum disorders run in my family. I mention that because of the connection to sensitivities and gluten issues.

My mother is diagnosed with RA (I think that's always autoimmune?), Fibro (researchers think it's autoimmune) and apparently had an abnormal EMG and/or NCV but I'm not sure why it was abnormal.

First of all, Celiac Disease is not an allergy! I have seen and heard it described in that way, even in the media. It is an autoimmune disease that produces a variety of antibodies, including gliadin, endomysial, reticulin and tissue transglutaminase ones. A deficiency of IgA can make a normally positive test look negative.

There's no such thing as a "mild" food allergy! Why? Because after repeated exposure to the allergen, it can become a more severe allergy. There's no way to predict when or if that will happen. It was my allergist who, when I asked him to test for celiac, did so without even blinking. He's awesome.

White rice is on the high glycemic list. Whole grains like wheat are not. Quinoa and brown rice would make for a better gluten free trial. But getting tested while on gluten is the best thing to do so you know for sure if you have celiac disease or not.

RA is an autoimmune disease. So is polymyositis. Does she have those test results of the EMG?! RA does NOT cause a positive EMG.

If I were you, I would find a GOOD allergist, hopefully one in private practice and not at an HMO, and get retested. They usually do skin prick tests, intradermal (injection) tests and/or RAST tests (blood tests).

To me, it sounds like you have not had good doctoring. What really helps when you go to a specialist is to only mention ONE condition. Not necessarily one symptom. Often if you mention more than one thing, they automatically lump you into the "trash can" diagnosis' or as a hypochondriac.

I hope you will get retested for celiac.

Well, I was saying I have not been testd for it. I don't consider the skin prick test for wheat to be getting tested for celiac. I have a good allergist, his patients think he is wonderful and he listens and spends time with everyone, one of the few good docs honestly tries to help improve patient's lives IMO. Though he is "only" an allergist.

Yeah I was saying she has RA and other conditions including Fibro.

I don't know more about the EMG/NCV except one or both were abnormal. That's one reason I started wondering if I have an actual muscle/muscle junction issue going on and not just Fibro and CFS and looked into whether I may have DM, MD, MG, etc.

No I mostly have not had good doctoring. Most PCPs of course will only spend a few minutes and just want to refer you off to a specialist. I don't know that I have the time, money and energy to pursue it.

And certainly I will ask to get the blood tests for celiac disease. I didn't know they could possibly diagnose by just blood tests, very cool. Good timing since I am planning to see a new allergist, or if I see a new PCP I can ask. (Love the other one but want one closer and will probably keep seeing the other one too.)

I guess it's totally possible for me to have celiac but for my sister not to? And it's possible for some celiacs to have less problems? Like, sometimes if I eat a bunch of bread (and meat), say I don't notice any negative effects. But maybe I still have it?

I don't understand why people like brown rice, I dislike the taste. And I'm one who likes the taste of barley grass shakes and a lot of healthy stuff most people couldn't stand. I do want to get myself used to eating brown rice. (Maybe quinoa too but the first time I tried it, I did not feel like I could get used to it, and felt maybe it was bad for me.) Just had some and my body expected to get the dip in energy that I get with white rice, but it was absent! (And thanks for pointing out that I should not alter my diet before the celiac tests, I will just have brown rice a couple more times.)

And on the LEMS note, I do get the bladder weakness/urgency issue, so annoying.

I also get a shortness of breath and labored breathing thing happening when I have hot foods. It's bothersome and of course it feels like I can't walk around or do much since I'm already "out of breath" and feel like just resting. Maybe lightheaded.