ms-sillyak-screwed

I just love it here! [giggle] I feel like I'm sitting around in my livingroom with my girlfriends girl-talking.

Matilda your posting was great. [giggle] I loved it! [giggle] You can buy boobs; I think the FDA approved them after all that time, (they really should have done that in the begining.)

Anyways back to the shopping trip -- I'm a royal diva too and love being a girly girl and have walk-ins the size of a New York City Studio. But I just had the same experience looking in the mirror, but not the boobs. I'm just so skinny. Like in the movie Goodfellas (my Goombas) with the wizeguy thing goin on he said -- she weighed "... a hundred annnd notin'..." That's me a 100 and nothin, and its not painful to look at [yet] you can see rib bones a little on my back. but I can't gain weight and my muscle mass is O too. Whats that? Ha! Mr. Muscle mass left the building about 4yrs ago when this celiac disease & thyroid thingy happened. I was alway 108 - 115 at 5'5" I guess maybe now I'm shrinking 5'4". And the guys think it's hot to look skinny... but I was a 2, and like you Matitda I'm a 0.

Thank you thank you jenvan for all those great beauty products links. I love www.sephora.com too. It's like a diva's paradise at the Boca Mall.

Open Original Shared Link

di•eti•cian and nu•tri•tion•ist were the topic tonight.

DaddyO and I were watching TV (something mindless I just can't seem to wrap my head around) but I was doing it to be with him. He was watching TRADING SPOUSES cute show, it had an attactive affluent Australian blonde living the NW and a disfigured and obese middle age hippy living off her two kids. Anyway the Australians hubby had a nu•tri•tion•ist that came to the house (in TV land) looked super hip and acted like he had it going on.

My point is nu•tri•tion•ist need to be educated and our best friends for life. So why don't we invite them to our support groups, celiac disease meeting and given them some incentive to spread the right words and HELP US!?

Tomorrow I'm going to see if I can find a nu•tri•tion•ist some how (in this hurricane mess) here in south Florida.

It seems all of a sudden what we type here is censored. I typed in the name of a hospital and it didn't appear on the post. And when I type in C D it comes back celiac disease > I looked up my local hospital to find a di•eti•cian last year when I began to realize my body was attacking itself and it was more than just Gluten and Dairy free for me. I needed information but she admitted to me she knew nothing about celiac disease. And everything she knew came from -- One guess? You got that right! RIGHT HERE! So we know more then they do. And I guess we need too in the times we all live in today. Sad isn't it?

I think a nu•tri•tion•ist is something different? NO? They are into nutrition aspect not so much the diet, aren't they two different things?

I will tell you who I went to and my NO GO experience...

Alalu Jaime MD

1325 South Congress Avenue,

Boynton Beach, FL 33426

NO GO

Alalu can't wrap his head around the words Celiac Disease. Don't waste your $money$ with him or his practice. They are in bed with the diagnostic testing place. They don't have a di·e·ti·tian or nu·tri·tion·ist . One of his partners just retired. DeGerome James H MD. I went to him. He's another NO GO. He was replaced by someone else, maybe he's better, I hope so. But I won't waste another penny there. Thank God he retired. One more down, how many more bad doctors to go.

Open Original Shared Link.

crc0622 -- do you really think Jacksonville is really worth the trip?

Mel -- I'm in the same situation looking for a GI doc again in the Broward and Palm Beach county area too.

Forget DR. BOTOMAN in Fort Lauderdale the office staff plays games. I wouldn't trust them.

I'll let you know if I find one...

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My pearly whites, aren't so pearly anymore.

I believe the water is bad here in Palm Beach County Florida. They add things to the water to make it that green-blue color. I remember my teeth enamel and etc was effected more so when my thyroid went wacky. I'm still trying to figure out if is was the thyroid or celiac problem that came first.

So, I need to find a dentist in this area I can trust with all my food (ingredient) challenges. Thanks all!

Oh yes, for many Celiac's it's a seizure disorder. Open Original Shared Link It looks like -- bigapplekathleen -- knows what it feels like too -- I can tell you what it's like, but I'll save that for another post.

Be well and keep smiling!

shayesmom -- I'm so sorry about your dad. I feel your pain. I'm sorry and offer my deep sympathy for your loss. I can't imagine my life without my 85-year old daddyO. He is all I have in this world since -- I also lost a loved one. My sweet 81-year old handicapped Auntie that was on a feeding tube and life support, all as a result of the medical community in Boca Raton, Florida.

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I feel that WE as patients need to hold these people in the health care industry responsible. They make us responsible to pay the bill! Only fair! We have to call attention and alert each other to the bad doctor and educate other people in the world about our disease. Doctors don't care about celiac disease, and don't seem to be able to wrap there little minds around the truth about celiac disease, food allergies and intolerances as well as chemical sensitivities. Because they don't profit $$$$ from our diet and there is no-magic-pill for them to (get a kick-back from the RX companies) and prescribe for them to cure us.

We must get in the habit of speaking to strangers about the disease. I do. I tell everyone I meet. People say, "Oh, you are nice and skinny! I hate you!" I tell them why. And what a seizure is like.

It all starts with us, little by little, educating others and spreading the word about bad doc's. We do have choices.

When I went through the final stages of my Auntie life I spoke to head nurses in 2 different hospitals and not one knew anything about celiac disease. I sat them down and [made them listen] to me. The head stupidvisor of nursing at Boca Raton Community Hospital told me she never heard of celiac disease. Comforting feeling she gave me, but it made me feel better to educate her. Well, as I type this it came to mind how all my time and effort spent with these doctors and nurses didn't save Auntie's life or fix what huge error resulted from their neglectful actions.

I like you, am also trying to connect the flawed genetic gene.

The doctors and hospital WILL make an account for their errors with my dear sweet Auntie.

I will make them. Open Original Shared Link

I don't know if some of the other Celiac's with thyroid problems like I have -- have the same problem with SOY.

Soy is not good for us!!! We in years to come are going to find out SOY is BAD. I have a problem with dairy, and have since birth. Soy however was my alternative. I love the way it tastes; Silk milk was my all time favorite, with rice cereal. Not anymore! After my food alergy tests I found I have a major probelm with it. I think I now know why.

On my blog I have a link to Soy Intolerance and it's problem it creates for us. Open Original Shared Link or here it is again Open Original Shared Link

Have fun - and ALWAY be educated because Doctors aren't.

DO NOT trust the medical community! Remember they are in it for the almighty $dollar$. They [want us to be sick], without our illnesses they don't make $$$ and can't drive those fancy cars, homes, jewels, trips and you get my drift....

Starbucks is the worst coffee I ever had! bitter y-u-c-k-y and b-l-e-c-k-y! Ooops, did I say that? {giggle} Sorry, don't throw starbucks coffee beans at me I don't know what all the rave is. And I love coffee too.

I, unlike most of you in Celiac-cyberspace that can tolerate dairy, I CAN NOT.

Last night I had a houseful and made a gluten free Thanksgiving meal, except for the stuffing I made outside the bird on the side for my guests. Oh my, they brought boxes of fresh decant desserts. I have to say I [have will power and can resist temptation]; however I must confess to all of you, I wanted to dive into the box of traditional holiday Italian desserts. It would result in a seizure, I know better. So I enjoyed flavored coffee and dark chocolate, free of dairy and soy.

Right now, I'm drinking my all time favorite raspberry flavored. I like "Brothers" raspberry flavored coffee, black with sugar yummy.

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Hi again!

The MetaMetrix test results are confusing. And last week when I was looking for answers why I'm allergic to Soy and Legums more then dairy and gluten. Or so it says in this paper. The doc admitted the blood tests are [NOT as accurate] as the scratch tests.

I have never been tested for celiac disease because the colonoscopy (sp) the gastro doc was clueless said I had a spastic colon. And got annoyed when I questioned him about celiac disease. The next guy I went to said, "I know you have it and you know you have it save your money." Thank Gog he retired. I'm back on a mission to find a celiac disease doc that knows something more then I do.

Kaiti's a doll! Thanx --- She emailed me the blood test to ask for for my Auntie on a feeding tube... It will help both of us. I'm going to the lab for blood work for my thyroid later today. I'm going to see if I can have this done too. I just think the MetaMetrix test are helpful but I really question its' accuracy.

As for the elimination diet. They list here things that are on the list that I'm allergic to. I think it's just a form they print and send out to everyone.

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Well, I'm on a mission to educated EVERYONE about celiac disease. If a stranger talks to me. I change the subject around and talk about celiac disease. I tell everyone, people in stores, at the post office, where ever, I don't care if they think I'm a little nutty. Maybe we can educate people we come in contact...?

While my eldery terminal Auntie is in the hospital, everybody I meet, I tell them about celiac disease and gluten. I tell the nurses, doctors and the nursinghome staff.

You see, I'm beautiful and when people look at me. They say, "Oh, you have a great figure. How do you stay in such good shape?" I tell them "You don't want what I have!" I hand out cards from the GLUTEN FREE AWARENESS program you can print them out at Open Original Shared Link Or when I go to the doc, they look at me when the walk in the room and say, "You look great what are you doing here?" Then when they open my chat they say "OH! I see..."

Old people don't understand perhaps cause of dementia and old age they can't wrap-their-heads-around the idea. Gluten is poison. I have an 83-year old uncle that is/was a chef and it took about 4-months of talkin about what I can and can't eat. Finally he got it. They invited me for dinner. He got it right. Thank you God. God is good!

So, my friends please don't stop talking about celiac disease, and yes they really [don't get it]. But if enough of us D-R-I-L-L it into their heads maybe we can get through to a few of them.

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FDA Docket: 2005N-0279 Food Labeling Gluten-Free

elonwy -- I applaud you! THANX!

One more down, a world full of doc's to go...

I'm back doc shopping again.

I got my food allergy test back a few days ago. I'm all excited.

But let me back up, the doc treats environmentally sick people. I'm a diva, in a big way glamour-puss, you know, make-up the long big hair, you know it... Well, either my deodorant, hairspray and/or make up products give off a fragrance and I'm not toxic to those patients. I won't go barefaced, wet hair and peeeU no deodorant....Although I believe he is a wonderful doc and is doing a lot of good in heath care.

I'll keep looking South East Florida for a gastro doc that understands Celiac and toxic food.

Hi all!

Interesting about our thyroid and the effect with food.

I did the same and played with the meds, I found that I can't tolerate the NATURE-THROID either because I can't tolerate the PORK. I will say I didn't feel wired or hyper, more natural over all but my digestion was totally off.

Now I've been taking the LEVOXYL 100 sometime 125. Not the compound anymore. Only with the hurricane mess and excitement with Katrina running across south Florida, I again with out power. The Compounding RX has to be refrigerated. The new doc said the NATURE-THYROID has to be kept in the fridge too.

It's all confusing because from what I understand the compounding RX uses a generic T4? hormone. Everything I read said the generic is unstable. The new doc said NO WAY. I don't know anymore...

But today I finally got my food alergy test results back I posted them on my new blog.

Check it out... too long to list here.

Open Original Shared Link

Thanks again!

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Hi All!

I'm going to go back and re-read the book. I have flipped through it and she does use the word cure.

She devotes a entire chapter to Celiac, backed up my doctors...

People do use the word "CURE" too freely now-a-days.

And we all know there is NO CURE and/or magic pill for this sillyak thingy we suffer from. You are right for newbies who are clueless (as we all were) in the begining, it can be misleading to use the word CURE.

Here I am! I have... [waving my hand]

It is a very informative book. I have been following some of what she says.

The recipes I am unable to use because of my dairy intolerance. The scientific evidence part went right over my head. You guys (celiac3270 and others) are really good at making sense of these things. Check the book out.

I spent maybe $15 well worth it for me.

One of the gals from the local CS support group turned me on to the book when I got sick after 4-heathy years. But consumed corn, rice, and potatoes. Major stress blindsided me. Up reared the ugly head(s) of the Celiac Sprue & Thyroid Nodule Monsters that kicked me around.

She opened my thought process to some of us celiac's can't tollerate corn, rice and/or potatoes too. And as things would have it, that's my problem.

The author of this book writes about it.

Check out her web site www.breakingtheviciouscycle.info/

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