ms-sillyak-screwed

BetseyCo -- I wish I has some answers how to gain weight. have you had your thyroid checked? Hyper - Hypo? I have since got my thyroid under control.

Also for the past few month I felt sicker after I broke a back tooth and the filling came out. OUCH! I went on antibiotics pennicilen (sp) based. I alway have problem with them. Not this time....With in a day of taking them I felt better, and by the time the 10 days were up I felt great. I had the root canal, and recovered w/out pain med. (medication has gulten and corn and dairy in them I can't tolerate) I really didn't have any pain! And since my tooth was fixed I've been able to gain a few, 107 up from 100. I just wonder if I had a gum disease or problem that was throwing my entire body off. I still have major food problems but not as bad as they were a month ago.

I don't hva any answers BetseyCo. Please keep posting here and in other areas our celiac cyberspace friends here are very helpful!

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Everyone here is on the right track...

I got an idea. Since the deadly peanut kiss death of the couple in Canada. The local Fort Lauderdale newspaper has had all sorts of stuff about food allergies following her death. And the reported numbers of deaths related to food are begining to climb 200+ a year. More then 50 I read someplace else. We all know it's much higher.

My idea is -- each of us write an email to the food, health, or medical section to our local newspapers or radio. Hipe up the WSJ article they will want to report celiac disease, too. I'll find sometime and do it. We'll why not, I sent the WSJ article about celiac disease in my Xmas cards this year.

Update -- I brought the WSJ article with me and asked my new GASTRO DOC (treats celiac disease) if he had read it. He said NO I DON'T READ THE WSJ. So, I gave him a print out.

I just got off the phone with my cousin that works as an art director in NYC in advertising for the medical industry (RX companies)... She said DOCs don't read the WSJ (unless they have a business brain), but the EXECUTIVES from all the RX companies DO. She said when they read it and see there is a huge need to find the magic pill and all the $$$$$ in it for them to cure us, it will get their attention.

Just a thought...

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Hi all!

I just found a wonderful doc who treats celiac disease he's from NY and moved to Boca Raton after the hurricane. I went to see him two days ago. He gave me a sample of DONNATAL he did day it had a narcotic (sp) in it. And this med it best to take at night bed time. He said it will act as a sedative. I did look up the ingredients myself on the net. It DOES HAVE DAIRY LACTOSE in it.

I am not able to eat dairy. It didn't list anything I could see as gluten. But I am also one who can't do CORN. I haven't try it yet.

I have had great success with something called DICYCLOMINE a substitute for BENTYL 10 mg capsules. That also has LACTOSE in it although it was a wonder drug for me. The side effects for me was only my face was puffy under my eyes and glands, and since I have developed a thyroid problem I don't take it as much in the package insert it said to stay away if you have thyroid disease.

Isn't the word BELLADONNA meaning = pretty poison? I alway thought it was. Are you talking about something else?

Deb -- Sorry about hubby. Many thanx! And God bless you.

You both have helped change and bring about awareness for celiac's, people and doctors.

We need to keep up the momentum in spreading celiac awareness.

I agree!

Any ideas?

Don't laugh. Call me Open Original Shared Link.

I think I'm going to send the article in my Xmas cards this year.

So people will get 'it'?!

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Thanx for posting and all the links!

I printed it and I'm taking w/me to my gastro doc apt today...

We made it front page WSJ lets celebrate!

Hi Celiac cyberspace friends!

Grieving is many things for many people. Love, compassion, guidance and understanding does help me, although they are very hard to find (except here) thanx!

The grocery store has become a quick visit 1-2-3. I don't look around at what I can't eat. As I write this, it dawns on me, all of you have a family, boyfriend, girlfriend or kids that you shop for or with. I'm not that lucky. I'm alone.

As I reflect, and read jerseyangel and how she withdrew. I wonder if that’s the real reason I'm alone? I'm a super outgoing, free spirited fun-loving soul and for my entire life, up until 5-years ago when I got this frightful disease, I was the most opti•mistic person you'd meet. Not now! I'm no longer and optimist, when they say pessimist I correct them. I'm a realist. –

jerseyangel is right when she said it was easier that way, how she withdrew. And maybe that is what I have done too? I make excuses not to go through the embarrassment of ‘going out’ ordering, them getting it wrong, watching others eating, then explaining why. You all know what I mean… It kills the mood when you are on a date, forget about a relationship or finding a hubby.

I did read a few different posts about all sorts of LOSS. I’m honestly sorry for your loss too. I know ALL of them well... All alone I made a life altering choice. Open Original Shared Link I miss her. I understand grief and loss. I know what it is like to loose it all – a multi millionaire one day and homeless the next. If I had millions again, all my money wouldn’t help me now, there is no cure! I know what it's like to be in the wrath of a cat 3 hurricane, worrying how to survive without safe food and loss. Loosing material things can be earth shattering believe me. But there is something much different about the loss associated with FOOD.

We need food to survive as humans.

I have since developed many food allergies other then gluten and dairy. Maybe I’m a non-responsive celiac?! It frightens me to die like Auntie. I’ve let go a long time ago of the things I no longer have, now I have will power. But I think out loud here, how will I survive with the few things I can eat?

-- Jknnej -- I just had my birthday. Ha! Did you say “Of course we can have birthday cake.” or something about you are making me a birthday cake? Well, thank you -- I can’t eat dairy, corn, rice, potato, eggs, nuts, gluten, and too much to clog this post with. I get seizures. So what kind of Birthday Cake can I eat? Tell me! I [don’t] have plenty of food choices. Think of your friend and friends here [open your heart] to others who need to grieve!

Frustratedneicey – I noticed you are a newbie. I’m glad you are here. Please come back anytime, you are welcome to vent your grief, you are very normal to feel the way you do.

frustratedneicey --

Do like I do. Go on PROTEST. I protest those peope, friend and family. When I was married to my last hubby, before Celiac. I would make gourmet meals, he would pour vinagar all over it. So, I went on protest and [wouldn't cook] at all. Try it. It's [your kitchen], remember, you are the [boss]. Don't let them muscle, guilt or shame you about celiac disease. It's not in your head, you aren't crazy. They are for being so selfish.

I feel the same way 5 years Gluten & Dairy free -- whole emotional aspect is drepressing! I cry plenty... you are right it is riding a roller coaster of emotions. Everyday I say, "Oh -- here we go again!" I can't eat most of what you all eat, my food allergies are to more then gluten and dairy. But I think I'm going to have buttons made up for us... That say about food killing us, or something more clever. Any ideas?

I still think Kaiti had the right idea about sprinkling Comet or AJAX on her food that friends would offer to prove her point. I think it was Kaiti get her to tell you the story.

Susie Essman has Celiac? That's wonderful, not really. But we need her help. She might be able to do a comic act about sillyak.

THANX! --jerseyangel

Great news!

With the hurricane so did changes... I found a doctor that treats celiac disease, very nice office staff.

DaddyO and I, both have an appointment with him this coming week. The girls in the office have called me back three times. I told her I can refer 100 Celiac's from a local group. Open Original Shared Link The group requires a membership fee. I have a problem with that and there policy, when someone doesn't have the ability to pay. My thoughts on a support group is to HELP others. So I made them that web site, but because I can't afford the groups fees I'm not a paid member. You might have better luck...

Anyway back to the GOOD DOC -- The office staff told me they were located in Ft Lauderdale, but hurricane Wilma blew the roof off their building and they scrabled to move and, moved to Boca. He has a basic web site Open Original Shared Linkhe's from NY and is good, I'm told. I will see for myself next week. His name is Dr Richard Saltz, 801 Meadows Rd. Boca Raton his number is 561.362.9360. You can say the headhead Ms Sillyak from Boca send you from the message boards, they will know who you mean.

But here are a few more NOT to TRY.

NO GO -

Dr Robert Mellman 561-395-5204

The girl that answered the phone didn't have a clue about celiac disease. Carol the assistant I left a message for a few weeks ago, she NEVER returned my call. He is the brother of a Indocronogist (sp) Mellmen in Boynton beach

NO GO -

GASTRO ASSO PA in Boca Raton 9960 Central Pk N Suite 302 488-2700. Again I left a messsage to speak to someone to set up and appointment RE: celiac disease. It been over a week and Debbie his assistant NEVER CALLED BACK!

Contacting Emeril Lagassee and Martha Stuart is a great idea! And there is also a less known cook but she's a power house -- Rachael Ray. How about some of the culinary schools too?

The other night in the middle of the night (my daddyO plays a radio really loud on talk radio when he sleeps) so I couldn't help but hear it. I stood outs side his door and listened. Anyway they were talking about, of all things, deaths from toxic food. The guy interviewer had a call in guest. I think she was from our Open Original Shared Link-- she mentioned celiac disease. But the guy said there are only 50 deaths related to food allergies a year. I find that number very low considering what celiac disease can do to ones body.

gabrielle -- Your right about your work-friends. I know how you feel.

I think it was Kaiti that got the point across to her friends. Get her to tell you the story. I hope I get this right. I remember a little where they ordered pizza, (they knew she couldn't eat it) so when it came and everyone dug-in she sprinkled [Comet or DrainO] on hers and offer her friends to sample what her pizza experience would be like...

I tell people when they say, "Your gorgeous! How do you stay so thin? I hate you!" I tell them, "I'm dying and being poisoned, food is killing me, we can trade places." You see WE don't walk around with a neon sign on our foreheads that flash so people will "get it!" I like the web site - Open Original Shared Link

I'm still on my quest to gain a few pounds, some how...

Grieving the loss of my sweet handicape Auntie and a wonderful life I once had. Toxic food more then just celiac disease has me many times overwhelmed.

I too also am in denial. I just turn my head and pretend it doesn't bother me.

I can never eat BIRTHDAY or WEDDING CAKE!

Does that mean no new hubby and or birthdays to celebrate?

No more Dunkin Donuts French Crellers.

I can cook for myself, I'm really okay with it. I love to cook... however eating out (unless at Outback or a top end steak house) is otherwise far off in my memory bank.

Popcorn? Nope... Seizure-for-sure.

Travel -- Ha!

I miss my health...when I felt great and life was good...

So, I grieve the loss of everything I use to enjoy... Open Original Shared Link.

Hi my celiac friends.

I am also going to the dentist because of a tooth problem. I will say this -- I have read that loss of tooth enamel is common in C D. I have experieced it. It's painful. But I noticed -- Rusla -- you are on thyroid medication. I read when your T's I think it's T4 is too high it causes tooth loss tooth problems... and my T4 was off the chart just before this problem.

Now the dentist wants me to take antibiotic before the root canal and crown. Any ideas anyone?

I'm wondering what I can take ANTIBIOTIC that will not kill me.

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.