ms-sillyak-screwed

No Narcolepsy for me... oh good. But you mentioned "twitches in my face" I get that a lot when I haven't had enough sleep or I'm nervous, and it it happens through out the day I end up with a migraine. I also suffer from the restless leg sometimes. Is that to do with lack of sleep?

Another thing that happens to me and my cousin with stage 4 narcolepsy mentioned it to me and it has happened to me. It's strange to describle almost odd. I get an odd feeling in the back of my head almost like a vein or rope is being tugged quickly, yanked or snapped, or it is being twisted and qanked really hard. Follow me? It hurts. And it is noticeable. I'll rub my head and sit down for a second. And it goes away. It doesn't happen very often. Perhaps 4 times in my life, only when I'm ultra stressed and super tired. My cousin told me it is directly related to sleep and she knew what it was and said the name. Anyone know what it is?

I found this I'd like to add here about Accredited Sleep Disorders Centers throught out the USA.

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lapetit8 --- I sincerely apologize from the bottom of my heart. I meant nothing but for you to be well and have good heath. I'm very sorry you are sick. Sorry sometimes the computer can be rather impersonal. I wish you only the best (((((((((((((HUGS)))))))))))))

I write this with love and care in my heart...

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Just wanted to say I ordered the book DANGEROUS GRAINS by James Braly, M.D. and Ron Hoggan, M.A. This evening I began reading and can't put it down. A must read for all. His idea of giving the book to our doctors is a great one. I would like to finish the book to be better educated for our mission.

I'm also thinking of a way to oraganize our campaign. We have some incredibly great idea to begin.

Enough is enough of the 'big guys' controling our lives! Now we will begin to fight for our lives. We need to get started developing our strategy, tactics, and how we can better organize together. The only obstacle (we can over come) I see is that we are all spread out all over the USA and Canada. It on the other hand isn't really and obstacle it's a major plus we can cover more ground in essence. However, I'm not sure we want to do it on this forum for the 'big guys' to loom, stalk and watch our every move and attempt to de-rail us. Any thoughts or ideas how?

You can take control of what will happen not only to your life but our future. Feel free to jump in... to become activsts in action...

I'm going back to read this great book I'm sure you all have read, if not you must...

Robix -- The speakers you wrote of the professional researcher specialized in nutrition, and the endocrinologist do you think they would be interseted in our fight in Washington??? We here mahny of us are forming a very large grassroot group that are going to take on the 'big guys' and fight for your lives. And the lives of future generation to come. The only way we are going to save our lives is to fight back. Let us know your feeling on the professional you mentioned and if you can get them involved.

lapetit8 -- I also couldn't tolerate dairy as a baby and my parnets put me on soy. You WILL see, believe me/us, or not, suit yourself. Look DEEPER for the reason why you wrote "It took me 16 years of being sick to get diagnosed with Celiac Disease and 5 years of symptoms to be diagnosed with a rare brain abnormality." Be in denial if you choose, you choice. I write this with love and care in my heart...

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lapetit8 -- You'll see like I did in time. You'll get sick(er) and wonder why... It's poison! I found out the hard way. It took me about 5 year.

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Veronica -- How are you doing on this? What do you think of it?

Does anyone take this medication now? What do you think of it?

My daddyO takes it for the neropithy (sp) in his feet. It works well for him. He said it causes him bad dreams sometimes. Also -- I will say this I had a girlfriend (a banker VP) take it (don't know why) she was far from depressed and super smart brain and sharp as a whip. She took it 3 weeks and she became dumb as a rock kept repeating herself and couldn't almost remember her name.

I am thinking or trying some sort of anti depressent but don't know what. I want to educated before I speak to the doc about it this week. I think this has CORN as a binder. I have a problem w/corn. Any suggestion? It says don't take it if you have thyroid problems and I do. Why would my thyroid doc give me samples of this?

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hope this helps

I think this is a great idea!

Lets start a list of each and every company gluten free and other wise. Their name address and phone numbers so we can all start contacting them about celiac disease. I will begin to compile a list also and will post what I can come up with shortly.

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Anyone have any luck and gaining a few?

I was down to 99-100 and now I'm 105.5 today I'm up a few pounds since I've been going to my chiropractor. He said he's going to help me gain a few more. Who knows....

As far as ensure drinks goes... I did some research for someone else here and I found out the ensure drinks have SOY in them. I believe SOY is poison and cauise my thyroid problems to begin with in the first place.

Food companies are still hiding things in their products.

Who would think they would put wheat and soy in coffee. Today I called Sarah Lee who owns CHASE & SANBORN coffee to find out only when I asked what was in the coffee to find out it has SOY protein.

From now on it's fresh coffee beans I ground...

For some of us Celiac's with thyroid problems SOY is poison like wheat is for others here. I really got up set. The only thing we can do is call every company and ask. We also need to all become more pro-active in our fight to get the word out about celiac disease and food allergies and let these big companies knw we aren't going to stand back and take it.

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CHASE & SANBORN COFFEE

SARA LEE COMPANY

1-888-246-2598

SPECIAL ROAST

The can has a blue label, white letters, with two old guys in a goldish logo that has a red ribbon with the words 'GOOD VALUE SINCE 1862'. It might be cheap but NOT GOOD for US!

I called the company today. I had a funny feeling it was NOT pure coffee. And I was right it has 1 gram of SOY PROTEIN. So if you are like me and others that have problems with SOY you might want to avoid this product. The labeling doesn't comply with the new FDA rules or this is old before the new laws.

Think twice and call the company and demand answers. Because this could be why you aren't getting better, hidden SOY is bad.

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That is great. Not that she has celiac disease. But you have answers to your genetic link. And she will get better and better as time passes. Now she will understand what you have been experiencing.

I haven't forgotten you about our brainstorming session thread on our fighting in our big world wide celiac disease battle. I'm forming more thoughts on your/our plan and in a few days I'll be ready to move with you and others that wish to join us full steam ahead.

You bring alot to this form and will be a major asset in our big fight. I can't wait to speak to you.

Hope mom is feeling better with every passing day!

Judyin Philly -- Great idea!

I took your advice and here it is....

How Chiropractors Have Helped Us, A alternative to main stream medicine we can explore

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CMCM -- There is so much truth in the things you wrote. I totally agree with everything. The same thing happened to me and Strawberries too.

Have you tried "spagetti squash" and an alternative, it is a starchy veggies too. And yummy when cooked right.

I am like you with the rice and potatoes as well I can do a bit of spagetti squash now and then. Have you tried it?

skinnyminny -- I have a question do you eat GLUTEN?

"with Corn bread spagetti with applesauce"

"Spinach Lasanga"

Don't mind me -- I can't eat many things other Celiac's can like corn, dairy, and anything packaged etc. What I listed above you posted are they just a name brand or are you eating gluten?

I'm Italian and miss pasta Sundays.

But do eat something called "spagetti squash" that is really yummy and its NOT spagetti just a carb 'like' squash that is celiac disease safe food. It is called that only because it looks like spagetti in it's texture. But NOT spagetti. You bake it in the oven and you can pour pasta sause over it. TRY IT!!! Or I put olive oil on it with seasoning and it's wonderful.

paulasimone -- Thank you for your thoughts and you are right-on it.

The thyroid doc is very nice but I really question her ability. She went on vacation right after my RAI and I had no way of contacting a doc for weeks and without being on any thyroid meds following it I have developed a heart issue now. Beyond that -- I have called around other typed of docs looking for another and everyone points me back to her. Perhaps they are all friends? She [had] a partner I spoke w/him when I had a bad reaction foollowing the RAI and had a seizure and asked if I should go to the ER and he said "no they won't know how to treat you and will make it worse." Everyone in town says he has a bad bedside manor and no one really likes him but says he's is a good doc. I was thinking of going to him to get another opinion.

I totally agree with you that everyone's bodies are different and normal range might be different for you then I. I found that out with my HRT homone replacement years ago. I believe that whole heartly. I said that to the thyroid doc but she doesn't really get it. When I go into her office she always tells me how beautiful I am and how good I look, she loves my outfit or etc... Last time when they weighed me I'm 98 - 100 lbs, from nomal was 110 -112. She said, "Do you know how many woman would love to look like you at your age, thin and beautiful!" I'm mid 40's now, and I wear make up and am a real diva with it and clothes. (It goes back to my volenteer work for the 'look-good-feel-better' work I did for the cancer society) I find when I feel really bad I paint a smile on my face, do my hair do, and pick out a glamours outfit and I do feel better when I see myself in the mirror. But I'm still sick. The last time when she told me my range is normal she just wanted to 'girltalk' and suggested anti depressents but everything she has perscribed his gluten, corn or dairy. And I feel I need to try something else. After 2 seizure this last week following food allergy shots for corn and etc. I am looking for answers myself and think I have to find something else to take.

The thing about my dose is I am taking 88 MCG and I know/feel it's too much. Last time she gave me samples of 75 MCG and I felt [really bad] the one or two days I took them. She and the pharmisit said people have a problem with the purple die in the 75 MCG. I am thinking of going back to the compounding RX because it did work better 75 MCG. I stopped only because 2 hurricanes last year and being without water, power and etc., over 3 wks I was unable to refrigerate the RX and reverted back to LEVOXYL. Hurricane season is 45 days away and this year I'm going to spend the summer some place else and (some of us are talking about marching on WASHINGTON to fight the government about our celiac disease cause) and I can spend some of the summer up north and not be around the hurricane stress (4 in the past 2 years is enough for me). But there again it need to be refrigerated and traveling poses a problem. Well, I worry about that another day [giggle].

One more things about the meds I did try AMOUR THYROID and did over all feel a whole lot better, but within a few weeks I develoed a blister on my tonge and later found out I am allergic to PORK and that is what it's made of. So I stop and when back to the other.

Carriefaith -- posted about salt I'm going to take her advise and reduce it to.

COFFEE is posion you are right, I know. I enjoy that taste I brew it black with fresh anise and some sugar. I have so many limitations in my diet and I miss dessert and this and dark chocolate is my treat. Also coffee really helps with my headaches. And it makes me feel good, when I feel bad...lol But I WILL take your advise and cut way back. Thanx my friend! Oh and the other thing is chocolate... I do eat it at night, not in the day time at all. I will make some changes.

cal/mag is great idea... There again something I stopped. I did do that and it did really work. I was taking BLUEBONNET LIQUID CALCIUM MAGNESIUM CITRATE. It did wonders ! I stopped and it slipped my mind. It is back on my shopping list for my next trip to whole foods tonight. I saw a program that said cal/mag doesn't work for sleep if not taken together and you MUST take it in liquid form to be really effective. A test to see if it is absobed try this - take a pill put it in a galss of water. Stir it up. If the water doesn't disolve completely clear your body isn't absorbing it. I tryed it with the Bluebonnet liquid and it worked. So thanx again for reminding me I'm going back to it tonight.

Sorry for being so long winded and listening.

Many hugs and sleep well to you too!

floridanative -- How did your mom do at the doctors in Tallahassee? I wish I knew one...

You must have heard the joke/expression if you are from Florida.

Do you know the first place to go when you get sick in FLORIDA?

Just like those silly emails people send.

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TO THE AIRPORT!