ms-sillyak-screwed

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!

Hi all!

I'm here looking for some answers to why I can't sleep. I have been Gluten & Dairy free for 5 years now and I'm not sure what the problem suddenly is. I have always been a night person my entire life I thought it was because I was born at 1:50 a.m. [giggle] and love the night... I don't have kids or a j-o-b so my time is my own. But in the last few weeks I'm sleep deprived. I normally go to bed around 2 a.m. and if not I fall asleep by 4 a.m. I get 8 or 9 good hours of sleep and wake up rested when ever my body wants to wake up. And I sleep uninterupted for the most part. But something changed I thought it was my thyroid medication but the doc said my levels are nornal. I do drink coffee and decafe at night. It was never a problem before. But something has changed. I can't fall asleep. At 4 a.m. 5 a.m. I toss and turn until the I hear the birds chirping at 6 a.m. outside my window and can sence the sun coming up. I wake up and I'm not tired and this has gone on for a few weeks now. I getting by on a few hours a night now. Last night only 3 hours. I can't keep going like this. I know my migraine will flare up and they are unbearable. I haven't had them in a long time.

I don't have GLUTEN on my system I keep a food journal and know everything that goes in to my mouth.

I do have second food allergies like SOY, CORN, LEGUMES, and NIGHT SHADE VEGGIES. This only happend following a serious thyroid problem that developed after what I now believe was from being POISONED by SOY. I am a Celiac that suffers seizures from these things and it causes me anxiety, in the way of post tramatic stress. I have managed it with out meds only because of the expense and the filler and binder in drugs make me ill. This last week I had two seizures from [food allergies shots] I had. As I type I wonder if that is what has caused my sleeplessness. I can't do Melatonin because of my thyroid medication I was told.

Silver_naki -- How are you doing with the AMBIEN? I read saw something on my local news they are having a problem with people geting into day time accidents from taking AMBIEN. Or they were doing things as if unaware they were sleepwalking and would wake up and not know they were doing something. Follow me?

floridanative -- I remember one of my private pilots I knew he said AMBIEN is what all the pilots took before it became mainstream. And that it wasn't addictive... However I know everyone's body is different. Are you really againt it? Did it not agree with you to well? if you don't mind me asking why?

I know I have to do something, but don't know what to so. Any ideas? Or perhaps anti anxiety med might take the edge-off and I can slip off to sleep. But don't know where to begin, many have CORN and etc...

I got some wristbands that have a little plastic ball that sits on your wrist to help with nausea. I get car sick, plane sick, boat sick, so I thought those would be helpful, I think they are called seasick bands. I haven't tried them yet.

I have never been pregnant -- but those seasick wrist band really helped me a lot when I was on my boat yachting. I was an avid boat my whole life and have never been seasick in my life. I swear by them and used them in 12" seas in a fierce storm when others were hanging over this side green in the face vomiting. You can buy them at West Marine or any boating store.

One other thing I found when I google pregnant celiac. I've pasted it and another link below.

This is a link to follow Open Original Shared Link

Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for pregnant women with untreated celiac disease because of nutrient absorption problems.

Short stature refers to being significantly under-the-average height. Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.

Flyingmango -- I don't know as much as many other here but I have been gluten dairy free for 5 almost 6 years. (I don't know anything about GERD surgery at all.) BUT I will tell you what I have learned the hard way about celiac disease. Many Celiac's also have a problem with dairy, for me it all dairy and also is eggs. It wasn't so hard because my reations were seizures assocated w/foods. It is not uncommon to have other food allergies or intolerences like I have. Like Corn...

I lived gluten & dairy free for 5 years and thought I was doing well. But I had no idea that SOY is bad for the body. I did away with milk and replaced it with SOY. For me a big fat NO NO. Not as we have been told by doctors and those in health field.

About a year ago I began getting sick again. I went thought major stress, the kind nornal people would end up in a nut-house over. It taxed my body to no end. The several deaths of loved ones around me around me, plus 2 hurricanes last year I was living on can food filled with soy. The stress was bad enough but my diet was filled with hidden soy products, and things in it's food groups call legumes. They are beans of all sorts even peas. And also the veggies group called "night shade" vegggies they began causing me to get sick all of a sudden. The result I developed a major thyroid problem. I've alway been a A-Type person and hyper as a kid. And so was my thyroid - hyer thyroid. I grew a hot noduel on my thyroid and had to under go radioactive iodine treatment and have never been right since. I have to take thyroid medication now for the rest of my life as a result. I believe there is a link between SOY and stress that caused my secondary food allergies.

KEEP IT SIMPLE. Know everything you put in your mouth and on your body. KEEP A FOOD (and body) JOURNAL. Go very basic to start over with. My rule is meat, fish, chicken, veggies, grilled broiled or baked, and fruit. I use olive oil instead of butter or mayo. Throw out everything in the house that is in a box and start fresh. I did. Watch out for cross contamination with food, and in your kitchen and those around you. Stay tuned into this site. Become active here with your experiences good and bad. They will guild you to better health. The people here are wonderful loving people that really care about you getting better.

As far as eating out... in the beginning it's hard OUTBACK STEAKHOUSE has Open Original Shared Link. Or try this too Open Original Shared Link

So my thoughts is to pick up a couple of good books on celiac disease that helped me like "Open Original Shared Link"

Open Original Shared Link I have NOT read it yet I have ordered it.

Another book to STAY AWAY FROM is the "celiac bible" its not good from what many post here say.

Hope I was able to shead some light through my experience. Be well!

I had a dream the other night in the middle of insominia...

My dream went like this ~ I was eating Italian pastries some of which were over stuffed cannoli's, cream and puffs, napoleons, pignoli, biscotti's, sfogliatelle's. I was chasing down my wedding cake with a double cappuccino right before I stuck my finger down my throat and made myself vomit frightened to death I would have a seizure. I woke up thinking it was reality. I reasure myself it was just a dream cause I wasn't getting married anytime soon. HA!

My sleepless mind is playing mean tricks on me. I never had that happen before... Oh my my my!

jerseyangel --

debmidge --

You are both very right -- I really have issues with the companies labeling "Natural And Atrifical Flavors" It might have some little thing that someones system can't tolerate and poses a problem for us. I just wish they would me honest and come clean and label every little thing so we can make clear choices.

Like for St Patties Day daddyO was making corn beef and cabbage the ingredient listed "Natural Flavor" He kept saying "...it ok, it natural favoring!" I called the company J. FREIRICH FOOD PRODUCTS LIC NY 11101 - 718-361-9111 The first lady said I don't have to tell you it's our trade secret. I said you can tell me now or you can tell my lawyer and a judge in court when my family sues your company because I experience seizure. She put me on hold. A nice man came on the phone. I told him my daddyO loves their products but I have serious food issues. He told me no gluten but that it had things in the pepper family such as chilie pepper, cayanne pepper and many other things including mustard.

Mustard would pose a big problem for me. I thanked the man for his honestly and said my daddyO would buy their products for himself and I would feel better eating something else.

I did some research for you... Don't know if you have secondary allergies to food like I do but it appears there are hidden things in this. Also it might be CC becace they make cherrios and they are made out of wheat if my memory is right. I can't do CORN, maybe you can. Here are a few problem ingredients I see. See below \/

modified corn starch -- caramel color -- wheat starch <OH MY, OUCH!!!

General Mills® Cocoa Puffs Cereal(bowl)

F25-2509209-5100

General Mills®

7/8 oz bowl Frosted corn puffs. With 8 essential vitamins and minerals.

Ingredients: sugar, corn meal, cocoa, canola and/or rice bran oil, corn syrup, corn starch, modified corn starch, cocoa processed with alkali, salt, calcium carbonate, fructose, beet powder and caramel color, trisodium phosphate, artificial flavor, zinc and iron (mineral nutrients), vitamin C (sodium ascorbate), a B vitamin (niacinamide), vitamin B6 ( pyridoxine hydrochloride), vitamin B2 (riboflavin), vitamin B1 (thiamin mononitrate), a B vitamin (folic acid), vitamin B12, wheat starch. Freshness preserved by BHT.

Open Original Shared Link Call them and give them a piece of your mind. I have been calling all different companies and telling them we aren't goning to eat their food anymore. It is the only way we will tell them we are mad as hell and were not gonna take it anymore.

Thank you all for taking the time to write and help in putting our heads together on this. I think we might have something here.

Tonight over dinner with my daddyO we went over all of your postings one by one. Earlier today I printed out this thread and this afternoon he read all of it.

First I want to give you a little background on my darling 85-year old daddyO. He is a retired VP from (a billion dollar) major wholesale food company. He is very active and acts 45 not 85, and a type 2 diabetic only since his knee replacement a few years ago. His sister is/was my sweet darling Auntie (the one I fought the doctor and nursing homes that were pumping her filled with gluten and dairy) that died we believe with celiac disease on a feeding tube. My great great grandfather was a southern plantation owner (farmer) lawyer and writer and was a famous man in southern history. And spoke before the agriculture dept in the 1800's. I can't believe I'm going to admit this... On his plantation he grew WHEAT... I can't prove it but believe in my heart the true reason for my bad genetic gene of celiac disease. My other set of grandparents were Italian and both died of cancer, for grandpapa it was colon.

Second you are all right. Each one of you made valid points that have plenty of truths. And some how we, each and every one of us, can make a difference causing a chain reaction of change. Will it happen tomorrow? NO! Will it happen soon, maybe… Maybe not?! But it has taken us hundreds of years to get into this mess. I have not read the book “Dangerous Grains” yet, I think that’s what it is called. I've ordered it and I'm sure it's all true. Grains and soy are killing us as humans (and our domestic pets) weren't ill like the modern man we have become.

There is and argument for every idea and more so the solution we have all raised.

Rusla

In New York and Boston slang they say "Bad" is good! [giggle]

skoki_mom ---- Have you had your thyroid checked?

Oh and bankruptcy is enough stress to flip you out.... Stress is bad I know Open Original Shared Link

I read somplace that some of us are really skinny and others are not; sometimes with celiac disease the body stores fat because it thinks it's being starved.

A few great book I've just read...

"LIVING WELL WITH AUTOIMMUNE DISEASE What Your Doctor Doesn't Tell You... That You Need To Know" by MARY J. SHOMON

"THE AUTOIMMUNE CONNECTION" by RITA BARON-FAUST & JILL P. BUYON, M.D.

"Breaking the Vicious Cycle" is also a very good book.

If you can't afford them go to your local library. If they don't have them ask them to please do a inter-library loan. That is what I'm doing and I'm waiting on "Dangerous Grains" and Open Original Shared Link Open Original Shared Link

Open Original Shared Link < this link will explain why.

Yesterday a doc (I trust) confirmed it for me. But read this and judge for yourself. I wish someone told me this 5 years ago before this happened to me.

Open Original Shared Link

I wish someone told me this 5 years ago. My doctor (the one I trust) confirmed it yesterday.

Open Original Shared Link <<< this is the link why. Find out now, before it's too late... I'm on a mission to help educate other that might end up like me with THYROID PROBLEMS or worse.

Jnkmnky -- I'm with you!

chamomille is in the RAGWEED family so if you have other allergies that might be the reason. It happens to me too...

Today I made phone calls to food companies again. I wanted to know what the NATURAL FLAVORS are in CELESTIAL SEASONING TEAS. I was shocked at the answer... the womans said I can't and won't tell you. It's proprietary and they don't have to tell us. She said it doesn't have Gluten but beyond that she wouldn't tell me anything.

pro·pri·e·tar·y

adj.

Of, relating to, or suggestive of a proprietor or to proprietors as a group: had proprietary rights; behaved with a proprietary air in his friend's house.

Exclusively owned; private: a proprietary hospital.

Owned by a private individual or corporation under a trademark or patent: a proprietary drug.

SO IF YOU HAVE A SECONDARY FOOD ALLERGY or intolerance to something like SOY (I call it poison) or anything other them gluten stay clear of these teas! If you are AREN'T getting better this might be the reason.

Today I made phone calls to food companies again. I wanted to know what the NATURAL FLAVORS are in CELESTIAL SEASONING TEAS. I was shocked at the answer... the womans said I can't and won't tell you. It's proprietary and they don't have to tell us. She said it doesn't have Gluten but beyond that she wouldn't tell me anything.

pro·pri·e·tar·y

adj.

Of, relating to, or suggestive of a proprietor or to proprietors as a group: had proprietary rights; behaved with a proprietary air in his friend's house.

Exclusively owned; private: a proprietary hospital.

Owned by a private individual or corporation under a trademark or patent: a proprietary drug.

SO IF YOU HAVE A SECONDARY FOOD ALLERGY or intolerance to something like SOY (I call it poison) or anything other them gluten stay clear of these teas! If you are AREN'T getting better this might be the reason.

Today I made phone calls to food companies again. I wanted to know what the NATURAL FLAVORS are in CELESTIAL SEASONING TEAS. I was shocked at the answer... the womans said I can't and won't tell you. It's proprietary and they don't have to tell us. She said it doesn't have Gluten but beyond that she wouldn't tell me anything.

pro·pri·e·tar·y

adj.

Of, relating to, or suggestive of a proprietor or to proprietors as a group: had proprietary rights; behaved with a proprietary air in his friend's house.

Exclusively owned; private: a proprietary hospital.

Owned by a private individual or corporation under a trademark or patent: a proprietary drug.

SO IF YOU HAVE A SECONDARY FOOD ALLERGY or intolerance to something like SOY (I call it poison) or anything other them gluten stay clear of these teas! If you are AREN'T getting better this might be the reason.

Did you say GREEN BEANS?

I thought I was okay with LEGUMES for about 5 years until I had a food allergy test and came back SOY was a major food allery for me. SOY is in the legume family along with green beans. Soy cause my thyoid problem. My doc (that I trust confirmed) it again yesterday.

I am also one of those celica's with a problem with corn. It began about 8 years ago with pop corn I becan having seizure with pop corn after the 3 time I stopped popped corn.

Hope you are feeling better!

Canadian Karen -- HI! How are the hemp hearts working out long term? Does it pep you up or mellow you out? I have problems sleeping too.

I noticed you have collagenous colitis. Is that like (I think it's called) non-responsive Sprue? Or non-responsive Celiac?

Do you also have secondary food allergies? I do. I found it stemmed from SOY.

I take Levoxyl --

If you have second food allergies it might pose a problem like what had begun for me. I believe it has CORN in it. I have a hard time with corn. I went to have a compound RX and it needs to be refrigrated. And I've lost power for 3 or more weeks at a time due to the hurricanes so I went back to LEVOXYL and its become a problem again.

The way I find out what ingredients are in a drug I google "levoxyl ingredients" and many time the manufacture web site pops up with the listings, if you can call the company.

pinkpei77 -- Sorry I couldn't resist, what a cute loveable face in your pic...

Keep listening to doctor(s) = keep being sick! Or live in denial. Like most people that find out the hard way...

Sorry to say to me it's filled with poison. I did a little research on a few ingredients below.

Many of the food being sold on the shelves are from the old labling. And will be there until the consumers buy up what there is. Sad isn't it?! If you don't feel good this might be why...

Here goes:

maltodextrin = What is a maltodextrin?

maltodextrins are easily digestible carbohydrates made from natural corn starch. The starch is cooked, and then acid and/or enzymes are used to break the starch into smaller polymers (a process similar to that used by the body to digest carbohydrate).

maltodextrins are generally sold as dried powders.

maltodextrins are polymers of dextrose (sometimes labeled "glucose polymers").

maltodextrins do not contain significant quantities of protein, fat or fiber.

maltodextrins are not produced from and do not contain malt products.

maltodextrins are not known to contain MSG.

Diabetics should follow the advice of their physicians.

maltodextrin’s glycemic index should be considered metabolically equivalent to glucose (dextrose).

lofat cocoa processed with alkali

whey protein = Open Original Shared Link

cellulose

natural and artificial flavor < BIG FAT RED FLAG - anything can be hidden here.

fructose = A very sweet sugar, C6H12O6, occurring in many fruits and honey and used as a preservative for foodstuffs and as an intravenous nutrient. Also called fruit sugar, levulose.

soy lecithin = Open Original Shared Link You might not believe it. In time you will see as I did why many of us got sick.

aspartame = This is also poison -- Aspartame Side Effects

The components of aspartame can lead to a number of health problems, as you have read. Side effects can occur gradually, can be immediate, or can be acute reactions. According to Lendon Smith, M.D. there is an enormous population suffering from side effects associated with aspartame, yet have no idea why drugs, supplements and herbs don’t relieve their symptoms. Then, there are users who don’t ‘appear’ to suffer immediate reactions at all. Even these individuals are susceptible to the long-term damage caused by excitatory amino acids, phenylalanine, methanol, and DKP.

Adverse reactions and side effects of aspartame include:

Eye

blindness in one or both eyes

decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision, decreased night vision

pain in one or both eyes

decreased tears

trouble with contact lenses

bulging eyes

Ear

tinnitus - ringing or buzzing sound

severe intolerance of noise

marked hearing impairment

Neurologic

epileptic seizures

headaches, migraines and some severe

dizziness, unsteadiness, both

confusion, memory loss, both

severe drowsiness and sleepiness

paresthesia or numbness of the limbs

severe slurring of speech

severe hyperactivity and restless legs

atypical facial pain

severe tremors

Psychological/Psychiatric

severe depression

irritability

aggression

anxiety

personality changes

insomnia

phobias

Chest

palpitations, tachycardia

shortness of breath

recent high blood pressure

Gastrointestinal

nausea

diarrhea, sometimes with blood in stools

abdominal pain

pain when swallowing

Skin and Allergies

itching without a rash

lip and mouth reactions

hives

aggravated respiratory allergies such as asthma

Endocrine and Metabolic

loss of control of diabetes

menstrual changes

marked thinning or loss of hair

marked weight loss

gradual weight gain

aggravated low blood sugar (hypoglycemia)

severe PMS

Other

frequency of voiding and burning during urination

excessive thirst, fluid retention, leg swelling, and bloating

increased susceptibility to infection

Additional Symptoms of Aspartame Toxicity include the most critical symptoms of all

death

irreversible brain damage

birth defects, including mental retardation

peptic ulcers

aspartame addiction and increased craving for sweets

hyperactivity in children

severe depression

aggressive behavior

suicidal tendencies

Aspartame may trigger, mimic, or cause the following illnesses:

Chronic Fatigue Syndrome

Epstein-Barr

Post-Polio Syndrome

Lyme Disease

Grave’s Disease

Meniere’s Disease

Alzheimer’s Disease

ALS

Epilepsy

Multiple Sclerosis (MS)

EMS

Hypothyroidism

Mercury sensitivity from Amalgam fillings

Fibromyalgia

Lupus

non-Hodgkins

Lymphoma

Attention Deficit Disorder (ADD)

These are not allergies or sensitivities, but diseases and disease syndromes. Aspartame poisoning is commonly misdiagnosed because aspartame symptoms mock textbook ‘disease’ symptoms, such as Grave’s Disease.

calcium phosphate

guar gum

calcium carbonate

xanthan gum

salt

ascorbic acid

ferrous fumarate

alpha tocopherol

acetate = A salt or ester of acetic acid.

Cellulose acetate or any of various products, especially fibers, derived from it.