ms-sillyak-screwed

You are all so funny... I love it!

I second that ROCK ON man!

It has taken me a few years to put the SOY -- thyoid connection together.

I'm a real diva with make up and hair. My hair is long almost to my waist, and style it like the little icon picture. My hair falls out in gobs when I eat soy. I don't have steatorrhea diarrhea, or plain diarrhea just a stool that isn't firm and formed. And I have trouble sleeping.

I must say I really believe there is also a connection to my celiac disease to me stopping hormone replacement patch I wore for about 10 years. At a very young age I had a hysterectomy. It was at the same time when celiac disease grabbed a hold of me about 5 years ago. I went on a gluten, dairy free diet. One thing I have is will power so I can stick to things. I got better or so I thought. I watched every thing I put in my mouth. But I replaced SOY for milk. I have Silk milk with rice ceral every morning. Drank a few glasses a day. Made Silk milk smoothes with strawberries, blue berries blackberries and bannans, almost everyday. I ate tofo for lunch. Tofo sushi when I ate out. The package foods I ate had SOY tuna, dark chocolate bars had SOY. My vitamins had soy in them like the E and others. I noticed when I didn't eat SOY my hair didn't fall out and my stools were more normal.

I went through major stress -- stuff a normal human couldn't survive and would have flipped out. That's when I began getting sick again. Remember SOY was a big part of my diet. It felt like I had a motor running inside when I would lay down to go to sleep at night. When I would cry get emotional, or (argue with the super loser I was engaged to at the time) it felt like I had a lump in my throat. And when I was up set you could see it grow in front of your eyes. In no time I developed a hot nodule on my thyroid. At that time my steatorrhea diarrhea came back but it was with what I now know as night shade veggies. I get seizures from foods that don't agree with me, and I noticed they got worse. I went and had the radio active iodine treatment and it burned up my thyroid... and almost killed me. I'm on thyorid medication but I am no better then I was before the radio active iodine treatment. I believe it's because of the soy and stress.

A few wonderful friend here brought it to my attention the night shade veggie problem and the soy allergy. I did way with night shade veggies and now the soy. But SOY is in everything and they list it as things like 'veggie broth' or give it a different name that is hidden. I have been calling all the food manufactures in the last few weeking fighting with them for lying to us. SOY is the problem why I feel I developed the thyroid problem. Hope I'm not to long winded here and got off topic. I hope it helps Open Original Shared Link

I know no spell checker. Why? This site is great otherwise...

I was always the first kid in school that sat down in the spelling bee's. Those nuns were so mean!

I just checked my Celestial Seasonings Honey Vanilla Chamomile, and it says "gluten-free" right on the box. Which ones supposedly have gluten in them?

You are right. I just went a read the box of tea and it says Gluten Free. I read it had gluten in a thread here on this site. I will go and find it. I just looked and I stand corrected. I'm not sure why but I have a reaction to it also. It might say gluten free but it could be processed in a plant that has wheat or other products that might cross contaminate it. The other thing I noticed it listed NATURAL FLAVORING. BEWARE! That can have any number of things that are hidden. We need to contact the company and ask what is in their natural favoring to ge safe.

Enjoy your tea... perhaps it's just me I'm hyper sensitive to everything.

These night sweats are getting worse for me. It's 3:30 east coast time and I'm still up...

Has anyone asked their doctors what is causing them. Or what we can do?

I was reading in a book about autoimmune disease that people like myself that experience seizures can't take EVENING PRIMROSE it will promote or increase the potental of a seizure.

When I talk to my endo doc she writes it in my chart and tells me you look great! And she wants to girltalk with me.

Anyone have better luck getting answers???

TireOfDoctors Lynn -- I send you love from my heart! xo xo xo xo

Nantzie -- my heart is broken for you. I send you xo xo xo xo

With tears in my eyes provoked by my emotions from what I read I type the things I hate too.

I HATE what my life has become!

I HATE that love-of-my-life was killed in my 20’s.

I HATE that my last ex-husband stole a 20 million dollar business from me. And got away with it!

I HATE lawyers and unethical judges.

I HATE that I lost my yacht and plane.

I HATE not being able to live aboard my yacht in the islands anymore or fly my plane around where and when I want like before. And take my friends to lunch anywhere they wanted to fly to. Or go scuba diving, jet skiing, deep sea fishing or adventuring God’s beautiful planet we live on.

I HATE that I lost my big beautiful home on the water in Florida.

I HATE that I became homeless because I trusted my ex with my life.

I HATE that I ate garbage and lived in my car.

I HATE that I was too proud to tell my family.

I HATE no longer being a socialite going to parties. Or getting my name front page for random acts of kindness I enjoy doing for others.

I HATE not being able to help the Red Cross or Cancer Society because I’m too sick.

I HATE the thought of another hurricane. (I’ve been through 6 in my entire lifetime.)

I HATEd watching my mother take her dying breath as I held her hand and I told to follow the angels to the light.

I HATE knowing my best friend and dog died the same day.

I HATE liars.

I HATE that my famous rock star brother no longer loves me or cares I exist. Understand I will always love him with all my heart. (Please don’t ask who he is or for an autograph. It causes me more anguish and pain.)

I HATE I have NO health insurance and having celiac disease, a thyroid disease, post traumatic stress and seizures.

I HATE I can’t take anti depressant medication, or something for anxiety or sleeping pills because it’s filled with gluten, corn, dairy or it interacts with my thyroid meds. The compounding RX is a king’s ransom I can’t afford to have all of them made.

I HATE I no longer have my sweet darling handicapped Auntie that was on a feeding tube that died from celiac disease. And watching her all by myself as she took her last breath (I couldn’t allow daddyO to see it he had just lost my beautiful loving mother that he adored a few years before. I wanted him to remember his sister in happy times.)

I HATE that Auntie’s doctors, the nursing home and the hospital lied to me to cover their mistakes.

I HATE I can’t support myself and I depend on the only man that hasn’t failed me, my dear loving 85-year old daddyO.

I HATE to think of what will happen to me when he’s gone.

I HATE that I don’t have a man in my life. (I’m not ugly.) And can’t even get a date…

I HATE living in south Florida in the land of super-duper-looser men, or the ones that come here with their vacation mentality or married men that lie just to have sex. Ha!

I HATE I’m alone, and I don’t have a husband or God never blessed me with kids to love me.

I HATE that I have lost interest in [almost] everything.

I HATE Tony Soprano for whacking Adrianna. (giggle) He’s getting his you watch and see. lol

I HATE that all my celiac friends are faceless here in cyberspace and I can’t thank them (in person) for all their kind words (typed on my computer screen), for the help, guidance and support you have all given me over these years. Or hug them and cry with them for their pain and suffering too or to look into their eyes and tell them I love you too.

Yes -- Peas are legumes.

Open Original Shared Link I developed a problem to them too.

I'll paste some of it here -- These are beans, peas, peanuts, soybeans, and lentils. Other members of the family lupins, clover, alfalfa, cassia, and soybean.

Open Original Shared Link

Okay here goes -– I was on the way to take a dip in the pool last night and had the radio on. I listen to a FM talk radio station in south Florida. If any of you would like me to post their phone # so you can call in just ask. I found them when in the middle of hurricane Wilma. Callers can talk about all sorts of topics they do have a topic but they welcome you to call in and vent or simply chat about anything.

Last night they were talking about GREEN BEER. I thought what better way to bring up celiac disease but through beer on St Patty’s Day. The radio guy said “Caller what would you like to talk about?” I said, “Green Beer and something called CELIAC SPRUE!” They said what is it? So I said, “It is spelled C-E-L-I-A-C second word S-P-R-U-E it is a life threatening illness for some that has to do with gluten in food and drinks. And for all those listeners tonight out there drinking green beer, or scotch, whiskey and wake-up tomorrow and are sick not from a hangover they might just have a gluten problem too.” He asked “…what type of symptoms?” I said it (oh my God I have to reveal to the world I have steatorrhea diarrhea) for me it is diarrhea and I have seizures too. There are 3 million reported cases and many more millions are un-DX’s in the USA. For some people celiac disease can cause AUTISM, EPILEPSY, DIABETES, ANEMIA, DIARRHEA and it masks itself in many others.”

They asked what is GLUTEN. (One guy knew a good deal about it) I told them bread, pasta, wheat, rye, barley, oats and is in just about everything people eat and drink. We talked about all the alcohols that contain it, I mentioned Vodka is made from rice or potatoes, and wine is okay from grapes.

The radio commentator is smart as all get-out, he knows so much about so many topics or he typed in his news wire and it came up. He said – “Oh, I recall the family in Jupiter, Florida sueing a fast food chain.” He asked me if I eat in fast food resturants. I said “…we’ll yes, only one and I get the grilled chicken fillet

but no bread.” I spoke about cross contamination. How I learned that if the French Fries are fried in the same vat of oil that the chicken tenders or fish sandwish is in it will pose a problem.” Then he said, “Well I think that family sueing won’t have a leg to stand on.” My heart dropped. He went on, and he added “...that the company first said there was no gluten and now they are admitting there is. And the food companies will have to be more truthful now.”

He asked about what people can do about gluten. I told them there is no magic pill. He said, “Not [YET] but there will be. And it must be hard -- doctors they don’t believe patients. But the pharmaceutical companies are who will help in time when they realized the money they will make.” I agreed. We talked about food allergies and one of the otherguys mentioned the peanut kiss and I said yes it was deadly. He said that they found out it wasn’t from the peanuts, I said I did NOT hear that to be true.

I added “I believe grains are bad for us and are killing us as a nation.” He said, “I don’t agree with you. We are an obese nation from eating bad junk food all around.” I told him that he was entitled to his opinion, but if you look at the USA as in a broader picture, that the #1 thing we spend the most money in health care is not, cancer, heart, or other illnesses, it is digestive disorders it tells us we are eating the wrong foods and gains have something to do with it.”

He asked how it interferes with my life. I talked about my seizure and (Oh God here I had to reveal more) loosing control of my bowels. And I said I know your listeners don’t want to her me talk about my diarrhea problem. But that many people have this up to 12 years before they are DX’s with it. They thanked me for the education on the disease and welcomed me to call back and chat anytime.

While I was doing my lapps in the pool I thought of many more things I wished I thought to say. Today I sent daddyO to the library to order me the book about deadly grains. I’m going to read it and call back again armed with more statics

about it and SOY. I am also going to email them with more info about celiac disease this week.

If any of Celiac’s here in cyberspace would like to call in or email them just ask I will post the web site where you can listen to them online they also have a 1-800 # that is good around the country if you would also like address your plight with the disease or things I forgot you mighht know more about.

Well, Oprah is missing out. But little by little we will get the word out…

Just wanted to report I was on a local radio show tonight talking about celiac disease trying to get the word out...

Claire -- Thank you for posting the press release!

Wow... I know SOY is bad but now I understand why it's so bad. We really need to get the word out to all over other Celiac friends because they don't know the damage they are doing to their thyroid like I did.

About 5years ago when celiac disease grabbed a hold of me and the Celiac seizure were more frequent. I stopped all gluten and dairy. I replaced dairy with soy. Soy everything. I have been through several hurricanes in the last 2 years and I ate soy based everything. All of a sudden, or so I thought, I developed a hot nodule on my thyroid had the radioactive iodine treatment. What a nightmare! I have been eating soy up until I started to put a connection with my thyroid and my hair falling out in big gobs.

And reading --- Ursula -- and some others profiles over the last year I've realized what I did to myself.

So many Celiac's are setting them selves up for major thyroid problems if they aren't alerted.

MILLSTONE COFFEE IS NOT TRUTHFUL CO.

Open Original Shared Link

Procter & Gamble Pla, Cincinnati, OH 45202

(513) 983-1100

I WOULD LIKE TO SHARE MY EXPERIENCE -- Today I called the number I listed above. I got into a huge fight today with Millstone coffee company for not disclosing their ARTIFICALLY FLAVORED ingredients in the Raspberry 'N' Cream coffee. First let me say they wouldn't connect me with the guy in charge. Over and over I demanded! And asked who owned Millstone it is Procter & Gamble -- they also make FOLGERS COFFEE.

The guy was a real JERK he told me the artifically flavored ingredients are a secret!

I explained he might not be awared of the new FDA labeling requirement that for people with serious food allergies (like myself) they need to tell us everything they put in their products. He said "OH NO WE DON'T! -- They are our trade secrets!" I said "HA! I'll just report you to the FDA for not complying." He said again "No problem." I told him it [would be a huge problem] when I have a seizure from something I am allergic to and I end up in the hospital I will sure SUE them for not telling me when I asked. He said "No problem!"

I asked for the CEO's name as well as his, he wouldn't give me his bosses name. He said he was the stupid-visor of the customer service. The more I pushed he said I had to get a letter from my doctor to get their trade secrets. I told him why should I have to pay my doc $200 for an office visit then another $200 for him to write a letter requesting that information, then another $200 office visit for the doctor to explain it to me, all for a $1.00 pack of coffee?

Then he said you need to think of us as manufactures there are dishonest people out there and you could be our competition and stealing our secrets. I asked him does he know what its like to have a seizure? He said no problem.

I feel it has soy or gluten in it for sure...

Whats the big deal telling the consumer?

Open Original Shared Link

We must hold the food manufactuers responsible for what is making us sick.

Please write to the boss man president of the company...

A.G. LASLEY

Procter & Gamble

P.O. BOX 599

CINCINNATI, OH 45201

Open Original Shared Link

CONTACT THE FDA Open Original Shared Link

PLEASE WRITE AND CALL THE FDA WITH COMPANIES THAT ARE GIVING US A HARD TIME GETTING INGREDIENT INFO

Open Original Shared Link THAT IS A LIST BY STATE

If the problem involves meat or poultry, which are regulated by the U.S. Department of Agriculture, call the USDA hotline at 1-800-535-4555.

tarnalberry -- I alway learn things from you. Thanx...

Do you know if these veggie broth have SOY in them. I have a major problem with SOY and so do many of is Celiac's with thyroid problems here.

Anyone here have a problem with MSG too?

ChelsE -- Thank U Thank U --

I have a girlfriend that just had a set of twins she's 50 and the kids are 2. The little girl is chubby drinking a lot of milk and the little boy is skinny, not growing like the girl and I have a feeling he has food allergies. The other day I brought my little doggie Goomba is his name (we are Italian - named after the Sopranos) ...anyway the little boy sneezed the moment Goomba walked over to him Goomba kissed him and he pet him. I looked at my friend and said "allergic to dogs?" she said her hubby is and he's allergic to everythings...

The little boy has really long lashes (he's 2)

Thanx for the info I'm going to print it out and send it to her.

Robix -- FYI Green Tea is BAD for those of us Celiac'c with thyoid problems. I drank it like crazy thinking it was good for me, when in fact it cause manor damage to my thyroid along with SOY. As far as your friends --- nettiebeads --- is right.

I know all too well about the ""I'm not that hungry" excuse" I use it too. I eat before I go out cause CC is a big factor too. It gets in the way of a lot of things, if we let it... [easier said then done]

I go through this all the time also. It will make you feel crazy. But you're not! They are [CRAZY] for not opening up their little minds. Celiac disease kills and if they love you or at least care they will understand -- if not now someday at a funeral.

When my auntie (on a feeding tube) died I talked about it in her eulogy and it added it in her obit.

I get seizure from toxic foods or medication with gluten, corn and dairy. Soy is my enemy too. And I tell people all about it. I have vowed to spend at least 10 minutes a day to talking to strangers about celiac disease. I did it today and do every day. It has become fun for me... I get off on the things they say.

Know that we care about you here.

...

darlindeb25 --- thank you for that information about no soy. Can I ask a big favor? If you have one of those tuna packs at home can you post what they list as INGREDIENTS?

StrongerToday --- does it say what type of OIL in the tuna??? It could have soy or other types of oil???

Thanx again my dear Celiac cyberspace friends

Fiddle-Faddle -- intersting comment about soy. My DaddyO said the same thing that Asian's and japanees (sp) eat alot of soy. Soy sause had wheat gluten in it. I don't know but their digestion is different they don't do milk in their diets. I have been told if they have ice cream they get diarrhea. And your right about finding out if they have thyroid problems like we do.

I'm adding a link that I haven't added to my blogg yet. It tells the truth about SOY being poison.

Open Original Shared Link

TinkerbellSwt -- thank you for the posting about that doc I'm going to print it out and read it.

-----------------------------------------------------------------------------------------------------------------------

Read labels and hold the food manufactuers responsible.

I got into a huge fight today with Millstone coffee company for not disclosing their ARTIFICALLY FLAVORED Raspberry 'N' Cream coffee. The guy told me I had to get a letter from my doctor to get their trade secrets. I told him why should I have to pay my doc $200 for an office visit then another $200 for him to write a letter requesting that information, all for a $1.00 pacake of coffee?

I feel it has soy or gluten in it for sure...

That's okay -- I'm going to write to the FDA and report to them my experience...

Millstone Coffee CO

Procter & Gamble Pla, Cincinnati, OH 45202

(513) 983-1100

This is really funny...

What doctor or where did this urban myth come from?

Thank you for posting that question. I had something happen to me the night before last and this confirms my experience.

I live alone 6 months out of the year, and I am a fanatic about what goes in my body. I keep a journal. My 85-year old daddyO winters with me in Florida and lives with me the other 6 months. He says he's not a Celiac. I know he is. I made him go fro m a celiac disease profile we are waiting for the results. Anyway he eats wheat bread, crakers, cheerios, english muffins and crumbs are everywhere in the morning when I get up. I clean like crazy. I think I'm being CC. He says I'm crazy...

He's an incredible cook (he was a VP in the food industy) we take turns cooking.

The other night I was making something yummy in the oven. I walked out of the kitchen for a few minutes to do something. Then he yells "Somethings burning in the oven!" I run in the kitchen and open up the oven to get a blast of bread cooking and without re·al·iz·ing what I'm inhaling it was a half a loaf of Italian bread he put in the oven with my food without me knowing. I saw bread crumbs in the bottom of the oven and closed the door.

Within a minute or two I felt like I was going to pass out from one of my seizures from toxic food. My legs felt like they were rubber and going to give out, and I would passout. My head started to pound... I made it to my bed my body was quivering like I was going to have one of my episodes and lose control of my bowels. I have never had a reaction to inhaling bread cooking before. Within two hours laying down with an ice pack on my head and drinking Pedialyte oral eletrolyte and it passed. I threw out my food in th eoven I wouldn't eat it fearing CC from air bor particles. The next morning I had steatorrhea diarrhea and I know I was glutened.

He didn't believe me. Today I made him read some of THE AUTOIMMUNE CONNECTION (great book) in it Dr Brown the celiac disease guru was quoted thorugh out the chapter on celiac disease. Tonight he said he won't bring bread in the house anymore. I also believe I'm getting CC from the crumbs and the dishwasher (hot water heater) water isn't hot enough or something.

Thanx for the info about inhaling gluten. It comfirms it for me! I'm going to print out this thread and let his read it...

I'm with all of you very frustrated with the food manufacturers too. I spent the day on the phone to find out tuna packs - veggie broth - is SOY. Soy is counter poductive in my healing process.

Is there a way we can all get together and start a thread with each food manufacturer list their name address and phone numbers? (emails don't work for this) And all of us write to them and CC the letters to the FDA. And perhaps let them know we are mad as hell and we aren't gonna take it anymore!.

There are millions of us with celiac disease and other serious food allergies that a tiny bit of an ingredient (with a hidden name) will make us more then just ill. Remember celiac disease does kill!

Hope you are feeling better!

I'm stuck on SOY today -- What I mean by that is SOY IS POISON for those of us with a thyroid problem. SOY is in everything. I spent all day yesterday will Walmart food allergy phone lines to find out VEGGIE BROTH in tuna fish packs are SOY.

What has helped me a lot is baby PEDIALYTE oral electrolyte. If I have steatorrhea diarrhea (peeU just thinking of it) PEDIALYTE oral electrolyte will make me feel like I have blood in my veins again. It's helps me when I feel a seizure comingon from toxic foods or etc. It really really works -- try it.

The other things that helps me a lot is shots of B12, Folic Acid and Pantothenic Acid. Vitimin pills don't work for me so well, because my digestion won't absorb them. And the vitamins have SOY in them or some type of filler binder that has corn in it. I can't tollerate corn either.

I can't do dairy or corn or night shade veggies. Click on the links in Ursula's postings. It's great very informative about LEGUMES. I have the same problem too. Didn't know it until after I had the tyroid problem I've been Gluten free dairy free for about 5 years, and throught I was getting better but the soy (legumes) were counter productive and I was doing more damage to my insides and had no idea until someone here brough it to my attention, that many of us have that problem too.

Also the drugs you are taking my have gluten, corn or other binders making you sicker. Look into a COMPOUNDING RX. They will make up your med free of what might be posion.

Keep a food/body journal of everything up put into your mouth on/in your body. It helps me find answers, time consuming but more so helpful.

Be well...

I guess I get a free pass to join your club today. I spent the entire day on the phone with Walmart 1800-WALMART to get some answers to the tuna packs walmart makes/sells under their name brand. Anyway, The ingredients list: light tuna, water, VEGETABLE BROTH, salt. Vegetable broth is SOY... soy is what is making many of us Celiac's with thyroid problems sick. I feel your frustration. Just like "modified food starch", I went through the same thing with Walmart today and the lame people on the phones, they disconnect you or put you in the endless Q, or send you to V-mail hell. I'm not kidding it took me all day.

But the good thing is the last guy I spoke to in the food allergy dept had food allergies himself (dairy) I spoke to him about celiac disease. I gave him our web site here and spent about 20 minutes giving an education about our disease.

If each and every one of us with celiac disease would take 10 minutes a day and talk to strangers about celiac disease we can spread the word. I do it. No kidding! I don't care if they want to listen or not I tell them about it. I feel that they might know someone, have a relative, loved one, or store the information in their little memory banks to call upon perhaps years later it will ring a bell and it will help someone else. Because celiac disease does KILL. No matter what the doctors say.

The new label laws will help us but a lot of the food on the shelves doesn't have the new labels and so until people buy it and it's replaced with the new labels we keep getting sick not knowing what we are eating.

Stay well my Celiac cyberspace friends

I'm stuck on SOY today. I have also been searching for a safe chocolate to eat. I am unable to eat dairy or soy. And I found dark chocolate doesn't have milk in it. But most of the times it has SOY or SOY Letin (sp) in it. And SOY is a big fat NO NO for those of us Celiac's with thyroid problems.

I LOVE THIS ONE -- Yummy! I have found a brand at Walmart Kosher isle called

ALPROSE SWISS DARK CHOCOLATE. It is a gray wrapper with gold and white lettering. Here are the ingredients: COCOA MASS, SUGAR, COCOA BUTTER, HAZELNUT MASS, VANILLIN.

ALPROSE DELUXE DARK CHOCOLATE W/HAZELNUT PRALINE. It has a red wrapper gold and white lettering.

ingredients: COCOA MASS, SUGAR, COCOA BUTTER, HAZELNUT MASS, VANILLIN. Filling: SUGAR, HAZELNUT MASS, COCOA MASS, COCOA BUTTER. * May contail trace of nuts.

It appears this is imported. If anyone wants the address just ask.