ms-sillyak-screwed

Hi my celiac cyberspace friends I'm back from the dentist. I think he's okay...

The good news is a filling came out, now I need a root canal, with crown. 2K OUCH!

The bad news is I need to take antibiotics for a week or so. My celiac question is... What type of ANTIBIOTICS are safe? Every time I have taken them in the past it wasn't a pleasent experience. I feel weak, dia..., hot & cold shiver, food going lightening-fast through me, in bed most of the time. Anyone know of a safe one to try?

Hi again it's me.

I've learned a lot about thyroid and food...

If your thyroid is HYPER you need to eat [less of food with iodine] (fish), and etc...

If your throid is HYPO you need to eat food that will stimulate it.

The material on the net is VERY CONFUSING! It was for me. Don't mess around with this. I went to several doctors. I went to one alternative doc that told me to have the lump cut off my thyroid. OUCH! I am a major DIVA, a girly-girl hair make up, highheels, you know the type. It makes me feel better when I wear something to lift my spirits. I couldn't bear having a scar across my throat like my neck was cut side to side. On my blogg there is a pic of Aunti & I, I have a scarf around my neck only because it went with the outfit. Not to cover up anything, although my thyroid was bothering me at the time.

But if you look at where the thyroid is and where your lump is. It is not under your chin, or where your limp nodes are. Perhpas it could be swollen a doc would know better. It is at the base of your neck and the gland is a butterfly shape. It can expand from side to side if everything is swollen. I'm not a doctor, and I dislike them following the experiece with my Auntie on a feeding tube. But I will say the radio active iodine treatment kicked my skinny-butt. Open Original Shared Link

Here are a few links to show you where it is. I haven't read the information listed on these sites.

Open Original Shared Link

This one has lots of pix Open Original Shared Link here it what it looks like http://www.yourdictionary.com/images/ahd/jpg/A4thyroi.webp

YES, I had a lump on my neck. It was a hot nodule on my thyroid.

If you would like I will take you back to what lead up to it for me.

About 5 years ago I didn't know what it was. A family member a nurse (not blood related) told me about C D. I believe it was Celiac attacks, they were unbearable I would passout and etc. The thyroid doc said I had borderling HYPER-thyroid. I went on a Dairy Free & GLUTEN FREE diet and got better for 4 years. Or I thought. I still ate night shade veggies and legums and lots of soy and fish. MAJOR STRESS HIT. 2 major hurricanes (barametic pressure dropping wasn't good for my stressed out system) MORE MAJOR STRESS and bam everytime I got upset the thing in my neck grew. No kidding! It felt like I had a lump in my throat and people would say why is that happening -- calm down.

I had a UptakeIn Scan. Ratioactive Iodine to see for sure and confirm it [was a hot nodule]. The doc said they could burn off the nodule (with radioactive iodine treatment) and leave the thyriod gland in tack. But they burned up my entire thyroid, and now instead of being HYPER - I'm now HYPO. I am on thyroid med's I'm sure for life. But the night shade and legems and many other food have since become toxic to me. And the thyroid med has corn in it and I can't tollerate corn. I had a compounding RX make it up for me pure, but with so many power outages the med had to be refrigerated. I take LEVOXYL now.

Go see a thyroid doc (hope you find one that understand C D.)

DON'T mess around and not go, it can kill ya. Thyroid is very important...

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Anyone read???

One of the girls in the allergy doc's office handed this to me when I was waiting for my food allergy shot the other day. It looked good. It had info on IGA IGG and more. I will get it if anyone in Celiac-cyberspace gives it a thumbs up.

I'll ask Santa for it for Xmas.

Do you blogg? Open Original Shared Link

Any of you around the country hear about the young kids deadly kiss? She was allergic to peanuts. Her boyfriend ate a big fat peanut bitter sandwich, then kissed her a long loving slow kiss and it KILLED HER! Open Original Shared Link

Maybe the bar will raise when the numbers come out those of us that are dying from celiac disease and toxic food. Like my dear sweet Auntie on a feeding tube and how an innocent kiss can kill you.

Perhaps Oprah can do some sort of food allergy show and the death rate? How many of us toxic food is killing!?

I hear about celebrities and athletes that die suddenly from seizure and/or dying and no-one ever knows why. It's in the news. Remember there are plenty of us Celiac's that get seizures from toxic food like my late-Auntie and I. I guess it's all a mystery.

But if employers could cut back on sick days and illnesses health insurance and etc, maybe they would consider it? When they see how it affects the budget they might?

I'll write too --- I just tell everyone and anyone I come in contact with about celiac disease. I don't care if they listens to my bla bla celiac bla bla... maybe something will trigger that bla bla bla info I rambled on about, stored in their little brains when it’s needed.

ok here are some more:

Kaiti you are a doll! I just love you! You never stop amazing me. Thanks for all the info. I don't know you but, you have helped me on the darkest day of my life with the death of my Auntie her feeding tube and celiac disease testing. I am forever a fan. I thank God for your big heart and kindness.

I'm going to do some letter writing.

Open Original Shared Link

debmidge -- thank you for the great idea.

I can't eat COCONUT. It's my all time favorite. I can't eat dairy so I would get the Coconut Italian Ice I loved it. And Coconut thai food yummy. Well, my test came back [i'm allergic]. As a matter of fact I'm calling around today for a dentist that is celiac friendly that doesn't have coconut flavoring in their cleaning material.

And ENSURE is a big huge NO No. At least for me. I read the label once and it had all sorts of things that would induce a seizure for me. I'm one of those hypersensitive types.

mightymorg -- peanut butter? Did they report it on the national news about the kids last weekend on the west coast of Florida... she was allergic to peanut butter. The boyfriend had eaten a big fat peanut butter sandwich and his long slow loving kiss, KILLED HER. When I read the article I was not only shocked I feel so bad that people just don't get it. It (peanut butter) really is very bad for everyone. Little kids get ear infections and they say it causes many problems later in life. Hence here I am.

I know that between the hurricanes S-T-R-E-S-S last year I lived on peanut butter and rice cake, tuna and soy milk with my rice cereal. Well, now I know I'm highly allergic to them, all but tuna.

mightymorg have you had a test to checked to see if you can eat peanut butter.

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.

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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?

Well, I spoke to soon. I was doing good with my thyroid med and haven't had night sweats in months.

Then the day before yesterday -- I ate a dark chocolate candy bar, I've eaten them before without a problem, but its been a few months (around the same time the night sweats stopped.) I have a major probelm with SOY, soy anything, soy lethin (sp) too. Well, the nightsweats are back since. My thyroid levels are perfect the doc says -- so what can it be? I will say this -- I did notice this morning (I get them the few hours before waking or that is when I notice it) when I sleep on my tummy, not on my side or back, that is when I get them really bad. It might be my imagination but its like when my body is in a horizontal and not on my back, it triggers it.

It only happens when I'm horizontal...

celiac disease and all these food allergies are so complex and docs don't get it. They don't want to get it, they can't profit there is no magic pill.

The last few days I have been feeling really bad. And in my private time alone with myself, I fear dying like my Auntie with a feeding tube. I weight 100LBS (dressed) I should be 115 at 5'5", I'm in my early 40s and don't know how I can live like this until old age. I'm [all alone], no hubby or kids and etc. Well, I value my celiac-cyber-space friends. I have many days when I think I'm dying. Maybe it's my post tramic stress? My mind playing trick? Or not enough sleep from the night sweats?

It blogged

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...

Open Original Shared Link

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.

Open Original Shared Link

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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Anyone try a soy supplement yet?

<{POST_SNAPBACK}>

Soy is a huge problem for me. My hair falls out in gobbs.

Soy is bad for people with Thyroid problems. It's in the legume family.

Big NO NO!

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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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