ms-sillyak-screwed

Flavored Coffee is a no no.

I have found they use SOY in many of them. And soy is bad for us. (Some are in denial here...) Oops did I say that? [giggle]

Ronnie -- have you read THE PALIO DIET or DANGEROUS GRAINS? They are great book and will guide you to some answers. They go into secondary food intolerence or allergies; like soy, legumes and night shade and etc...

I've GAINED 7 LBS...

I'll share with you what I'm doing... Open Original Shared Link

I have been seeing my Chiropractor and he knows a little more about this then I do. He is bone crunching me 3-times-a-week. What he has me doing is having a big meal for breakfast. For me I can't do the peanut butter, ice cream or any of the ultra yummy things like that. I started off about 6 years ago when I came down with celiac disease and the seizures that came with it stared a few years before. I stopped the gluten and dairy cold-turkey no problem. Thought I was doing great and then S-T-R-E-S-S hit hard 4 hurricanes in 2 years and other drama. I thought I was doing good not cheating. I had been eating lots of RICE, CORN, NIGHT SHADE VEGGIES, LEGUMES, NUTS, & SOY lots of soy. It's in everything. Then I developed a major thyroid problem. And my life suddenly changed again... I thought celiac disease and these secondary food allergies, seem to pop up out of no-where-land. And got sicker and now 6 years later I can NOT eats CORN, NIGHT SHADE VEGGIES, LEGUMES, NUTS & SOY.

What my Chiropractor is doing is bone crunching and "resetting" my body as he puts it. What he has me doing is -- a big dinner type meal for breakfast and a carb-like veggie 3 times a week. For a snack after breakfast before lunch I make fresh fruit smoothes (3 bannana's, blackberries, raspberries). I can't miss lunch, and another snack of fruit or sqeezed fresh veggie juice. And then a healthy protein and veggie dinner without CARBS, rice, potatoes, you know starchy veggies like spaghetti squash. NOT at dinner time only in the early part of the day. And I had been exercising at night; he wants me to do it day time.

I have a hard time with rice & potatoes makes me feel kind-a- bla. I am only doing it 2 to 3 times a week in the MORNINGS ONLY. I don't get the night sweats if I do this.

I don't know if any of you have a Chiropractor you can "talk to" and understands celiac disease and digestive problems you might be able to realign your body to aid in the area of digestion and weight gain?

I can't consume Boost or Ensure Plus they are filled with: D Water, corn syrup, maltodextrin (corn), sodium and calcium caseinates, sugar (sucrose), canola oil, corn oil, high-oleic safflower oil, soy protein isolate, magnesium chloride, potassium citrate, calcium phosphate tribasic, soy lecithin, natural and artificial flavor, potassium chloride, sodium citrate, magnesium phosphate dibasic, choline chloride, ascorbic acid, carrageenan, ferrous sulfate, alpha-tocopheryl acetate, zinc sulfate, niacinamide, calcium pantothenate, manganese sulfate, cupric sulfate, vitamin A palmitate, thiamine chloride hydrochloride, pyridoxine hydrochloride, riboflavin, folic acid, chromium chloride, biotin, sodium molybdate, sodium selenate, potassium iodide, phylloquinone, vitamin D3 and cyanocobalamin.

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Pharmaceutical Companies Links

I’m not sure why our brainstorming thread went no-where.

Open Original Shared Link Almost 1,100 people have read it and no-one wants to become pro-active?! I have great hopes for change and was ready to move with it. But it seems no one else wanted to partake. Oh well…

LYNNE tiredofdoctors!!! -- Asked for contact info on Pharmaceutical Companies and I have linked it below. Many of you might have other reasons to write or call…

I have been on a mission to better understand what the truth is and what we aren’t being told.

As I have needed to take different types of medication I've learned it laden with gluten, dairy, corn and things you wouldn’t believe. So I have been going to a compounding pharmacist; it’s more expensive, they makes it special. But there are drugs he can’t get, or make, that I need, or may need over my life-time. I started to realize after calling a couple of the companies that they are all deceiving us, in varying degrees. And that the dyes in the medication many times are cross contaminated with gluten, corn, dairy or etc., because they either run the pills on the same lines with gluten, corn, dairy and etc. Or the pharmaceutical company buys the DYES they used in their pill to make the coloring from another company that makes pills [with] gluten, dairy and etc. Follow me?

Unless you call or write the drug manufacturer and ask “”…Can you 100% guarantee the pills and dyes are free of gluten, corn, dairy or etc.,?” -- Aren’t we still getting it in our systems???

Below are the links

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

One last thought -- tammy --- Open Original Shared Link ---- Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Hope this helps.

Be well!

..... dx was an allergy to latex and/or plastic.

1. blistery rash

2. IBS

3. nutrient deficiencies (multiple)

4. tooth problems

5. fatigue/sleeplessness

6. cold, sweaty, tingly feet

I also agree with everthing posted here. A few things I'd like to point-out since you are a newbie. I've been fighting this around 6 years now Gluten & Dairy Free and (free of soy, legume and deadly night shade veggies for almost year now)...

If you go for a blood test -- you MUST have gluten in your system and even at that you can come back with a false negative. So like someone said go for the test. Then when you walk out of the lab, start your new life gluten free.

This is [one of] the test you must ask for a complete Celiac panel to be performed:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You also might want to have your thyroid levels checked. You cold feet might be a sign...

I found this out the hard way -- Also if you are allergic to LAYTEX (like I am) you are more then likely allergic, senstive or reactive to AVOCADO and foods in that family.

I had the same problem with my teeth. Use a SOFT TOOTH BRUSH and don't brush really hard.

One other thing many Celiac's have a problem with what is known as seconary food senstivities or allergies. Like what happened to me. I had a problem with dairy since birth, and since have a MAJOR PROBLEM with SOY. It's in everything. (For me it cause a problem with my thyroid.) SOY is in the LEGUME family and many can be a sourse of a problem. (google legumes and see) Dr.'s don't tell you but for many of us Celiac's SOY is poison. There are many threads on this site either way pro and con. I'd like to err on the safe side and remove it from my diet.

Pick up a couple of great book that will help you understand the disease. THE PALIO DIET is one and the other is DANGEROUS GRAINS. Both books will help guide you through and give you correct information.

Stay tunned in here. Those on this site are wonderful loving people that care.

I know a month or so is a long time. A week is plenty for some. But what I was thinking is... some of us can rent houses/villas or some type of housing that we can stay a week two or more. Or even do house swaping with Italians. It might be easier for some of us Celiac's that have serious secondary food allergies that have real issues with questionable restaurant to be able to stay in a place we have a kitchen and can cook fresh food.

Our group can set up dates to meet with these docs or researchers, say some of the group can meet one week and others another week and so on. Follow me?

Not only would it be fun, but we might get some media attention, and we can get some of the answers the US docs don't care to know or give us...

floridanative -- Hope you are feeling better! Anyone older then I am (mid 40s) I call elder. [giggle]

I contacted that Dr. B on the west coast of Florida (a while ago) and I was treated the same way by the girl answering the phone and told me the same thing...

Writing to the book publishers and telling them the info is NOT correct, is a good idea. But unless the book is RE-printed the bad information is still circulating... It's like yesterday I read a label that said "GLUTEN-FREE" and as I kept reading it was filled with barley, and oats. Some newbie will buy it thinking its's safe; and get sick.

Oh, and taking about a trip -- why don't we all go on a trip to Italy and see if we can find out more about our disease? We could get BOB & RUTH'S GLUTEN-FREE GETAWAY to sponser something over there perhaps for an entire month or so, we can get an interperter to help some of us. We can see if we can get a form in front of some of these researchers and doctors...

I keep thinking back to something I read awhile ago about how in the the early 50's the european countries (Italy) were trying to understand celiac disease. They were doing research and on the right track. And they realized it was a huge problem, they educated their doctors. But the USA doctors that came back from (their time in europe) didn't want to admit we have a huge problem in the USA so they went into the DENIAL MODE. Easy enough. They are in bed with farmers and the agriculture department and are totally depentant on one another, in a big way even more so today. And it was around the 60's when JFK was in office (if my history is right) and it has now surfaced that JFK was a Celiac. Then he was killed. And with his death many things were left untold. So perhaps there is some connection why around that time the US government went into the denial mode, put blinders on and ignored the problem. The euro docs know its a problem, the US doc's refuse to wrap-their-tiny-brains-around it.

I guess I just wonder what we can learn from the doctors in Italy???

floridanative -- I know just what you are going through with elders! My heart goes out to you (((HUGS)))

Thank you Lynne!

--

I agree with everything that is said here. I would just like to add something here.

I also developed a serious thyroid problem. And I found out the hard way the drugs they give us, either have corn, gluten, or dairy in many of them. So please check if you are put on the medication.

Another warning -- the dye used in the thyroid pills most times are cross-contaminated with GLUTEN. I have been on a mission calling drug companies to find out about a problem with the what is in the dyes they use. And I was alarmed to find the drug manufactures are buying the dyes from companies that run gluten on the same lines they are making their other drugs, and the reason for cross contamination. I was allerted by my doctor when she said some patients can't tolerate the dyes in the colored pills.

SO -- the solution is -- have your thyroid medication made by a COMPOUNDING RX. They will make it free of all the things that can be making us sick(er).

My last thought is -- If you are having a thyroid problem give up the SOY (it's bad for many of us and many docs give out the wrong info about it). Some here don't believe it -- just a thought to play it safe.

-

-

jenvan -- Thank you for the kind words.

The serum was made up two different times. The first time I had the SHOT (I didn't know) but I had a cracked back tooth and the doc said the reason for the reaction. I took anitbiotics and for the first time in my life taking them I felt better, much better following knocking whatever was in my system out. After about 3 or 4 months and my tooth was fixed I went back for another food-allergy SHOT. A new batch of the serum was mixes the day before I went it. You are right about the serum is to desensitize one to the allergens. What [was] in the batch was to be foods I currently eat that I only have a mild or slight senstitivity -- things I know are safe by reading my body. And she did add something in the serum to desensitize me to SOY. I know SOY is a huge problem for all of us here (some choose to be in denial). However, that might have been what caused the problem.

The girl that does it is very nice and thoughtful, and believes in what she does. And for envoiromental allergies it works. For food; nope!

You mentioned some of your allergies went away... I read something in a book I read -- it's a very technical book about autoimmune disease like the ones we suffer from here. In my case earlier in life I had hay fever, fibromyalgia, and other things I [no longer have] that have turned into more serious disease(s) now. This book was a light-bulb-moment for me. It commented-the-dots for me to understand why my bodies health and illnesses have progressed over the last 15 years. You see, I thought I was living healthy gluten & dairy free for 5 years, until suddenly after eating SOY and other things I thought were healthy in this new diet -- in-fact I was posioning myself and making things worse. And hence the secondary food allergies...

Open Original Shared Link

List Price: $39.95 -- But go to your local library and have them do an inter-library loan if it's too pricey. It is very technical, in fact, but flip through it and you will gain valuable information.

I was just surfing th net lookinf for soy free chocolate and found this I'd like to share with you.

Open Original Shared Link

--

I really want to keep this thread and our GOAL alive. I wanted to arm myself with more knowlege and have finished several really good books about celiac disease.

I am creating a web site for us to put our plan into play without the 'big guys' watching our every move. It will be a site that doesn't cost anyone anything, just out of the public view. If you would like to join in our mission for change please send me a message and I will send you the web site address and we can all communicate there. Or post your interest to help here and I'll email you the URL.

If any of you have a different or better idea please share it with us and we will give that a try.

DingoGirl -- STOP SOY!

SOY is poison. It is what caused me my thyroid problem and will cause hair loss.

Have your thyroid checked and remove SOY from your diet. Really give it a try you'll get better. I am not kidding I promise!

I just noticed your last post. What were your thyroid blood levels, if you don't mind me asking??? Because everyones body is different. What is normal for you, might not be normal from me. I went to my doc a few weeks ago. I was bouncing off the walls in the hyper thyroid mode. The doc said "You are in the NORMAL range" it was a few number away from being a huge problem. I knew by listening to my body I was getting too much meduication in my system. She said "...your okay!" I wasn't -- I went to another doc and he changed my medication and I feel so much better.

And P.S. my hair stopped falling out. For me SOY and thyroid hyper or hypo causes hair loss for me.

katshow --- Just remember everyones body is different. I had the skin scratch tests and had a slight reaction from the scratches and I had a big time celiac disease reaction to the SHOTS. I get seizures and I got 3 in less then a week and a half, after having the "SHOT" to counter-at the food allergies I have. I believe the doc was a liar (for $$$) he doesn't have a clue about celiac disease. I will NEVER under go those shots again. It's frightening having celiac disease seizures and being alone!

The skin DOES absorb!

Lynn -- glad you had good luck!

I have a thought. I wish some how we could get a copy of Dangerous Grains & The Palio Diet to the health care community. I don't have an answer how to get them to read the book(S). But next time I have the need to go, I'll ask if they read either book.

1 out of every 200 people have celiac disease!!!!

Hi all!

Just wanted to update you. Well, I'm on a mission to spend at least 10 minutes EVERY day and talk celiac disease. I talk to strangers I talk celiac disease with everyone I come in contact with. One day I took my own advise (I began a thread some place here) and wrote to my local newspaper about celiac disease. It's easy! Do the same to your local press too.

I will post it below what I wrote to her. And I also invited her into [our world] right here...

__________________________________________________________________________

Sat, 21 Jan 2006 Sillyak Screwed wrote:

Dear Jan:

I enjoy what you write...

Several millions of us have Celiac Disease and other life threatening food intolerance's. Such as gluten, dairy, soy, nuts and to many to list. I suffer with seizures. Remember the death kiss from peanuts?

I was hoping you could add to your bits & bites paper facts, recipes and information about the celiac sprue disease. And with awareness people can get help, restaurant will add to their menu and the school system will feed kids healthier. With the new food labels in effect it will help too.

And please visit Open Original Shared Link it is a site with sick people through out the world fighting to bring awareness and learning to cope with food that is making them sick.

Also I created a web site for a local support group last year but couldn't afford the dues to join. www.sefloridaceliacs.homestead.com/ I've never been to their meeting, they are the only group Miami to Stuart.

Jan -- thank you for taking time to care.

Sincerely,

I signed my name.

___________________________________________________________________________

From: "Jan Norris" <jnorris@pbpost.com>

Jan Norris, Food & Dining editor

The Palm Beach Post

P.O. Box 24700

West Palm Beach, FL 33416-4700

Look for my article on Celiac and a chef coming to teach, April 27.

Thanks,

Jan Norris

__________________________________________________________________________

"The Paleo Diet"

Is a wonderful book that will help each and everyone of us. If you haven't read it buy it, borrow it, or order it through your local library (a inter library loan.) I just finished it. Its a great reference. And THE PALEO DIET RECIPES are safe and yummy too.

"Dangerous Grains" must be in your book collection. Some how we have to this book into each and every nutritionist-dietitian, doctors hand to read. If they understood our issues and the disease perhaps we could get better care...

Cross contamination is my big thing.

We think we are buying the right products but many of these food manufactures are processing the gluten and gluten free foods with the same machine and belts. They aren't clean properly.

I think that is the problem I've been having with the rice flour I uses every blue moon. It is either sitting on the shelves with regular flour and is getting cross contamination or it's processed where flour is and the label doesn't reflect it.

Today when I went to buy dried apricots and the new labels read: processed in a plant with gluten, soy, nuts and on and on... It frustrates me too. Because the companies are now telling us the truth about trade secrets we're not telling you what's in NATURAL INGREDIENTS or FLAVORING.

QUOTE

"Response (Gwyn) - 09/26/2005 12:58 PM

Thanks for contacting Folgers, Vincent.

We use natural and artificial flavorings in our flavored Ground and Whole Bean versions.

If you prefer decaf coffee, it might help to know we only use pure water and natural ingredients for decaffeination. So, you can have all of the flavor, without all the caffeine!

Folgers Team"

I just read that and had a light bulb moment....

They put NATURAL INGREDIENTS in the decafe and flavored ground and whole bean coffees...that means don't trust those dirty little words NATURAL INGREDIENTS Beware something is hidden, it could be all sorts of things from soy to carmel or their secret???

nessa -- can you do dairy? Sometimes they say when you are in the healing process you eliminate dairy until you body heals. Then when you feel good again to re-introduce it again, and see...

ChelsE -- I love that DOVE foam mouse conditioner too. It's really nice and has SILK in it not SOY . It strips my color only a little. I have bottle red hair. Red is a hardest color to keep. I can't find DOVE foam mouse anymore here in Florida. A sales girl in Walgreens told me they discontined it. I hope not it's really good and I'm very fussy diva.

Matrix is a good option too. Quality line of salon products. Look at ingeredients in Biolage... Open Original Shared Link Open Original Shared Link write to them and ask the site says natural inngredients but natural can be wheat protein. Just check and see...