ms-sillyak-screwed

TALK TO THE HAND is something I feel I have to do living with celiac disease. Ha!

I did send an email and invited them to read my blogg how I had to pull Auntie's feeding tube. In cyberspace do people read emails or wearout their delete buttons?

Open Original Shared Link Don't think people want to buy books that get bad reviews. [lol]

Yes, I have it too.

I was hyperactive as a kid and all my adult life, you know A-type personality. Then super major chronic stress hit me, didn’t sleep, I ate bad food. In 2001 I got hit with both of these diseases at the same time. Which came first anyone know?

About 5 years ago I realized the food I was eating was causing steatorrhea diarrhea that has me weak and frail and I was having episodes where I would have seizures and pass out. It was frightening and still is I’m a divorcee` alone with no kids or new hubby. A gastro doc after co·lon·os·co·py said “spatic colon/IBS” and would NOT listen about celiac disease. I also saw an en·do·cri·nol·o·gist she said that if I calm my colon and the borderliner hyper - thyroid should balance it self.

I went gluten, dairy and stress free. I ate in my diet things like rice, potatoes, corn chips, night shade veggies, nuts and etc. I did very well. Or so I thought for 4 years – super major stress hit again – This time I grew a hot nodule on my thyroid. I had the RAI treatment. It nuked and burned up my thyroid too. I went from hyper immediately to hypo. The seizures following the RAI were terrifying. I thank God my 85 year old father was with me to care for me. 4 months following the RAI the doc put me on thyroid medication. It was a challenge to get it right. I've tried many I can no longer eat corn, and it, dairy and gluten are in some form or some combination is in most thyroid medications. It’s been a year of challenges much greater then when I first realized I had celiac disease. I wish I could say I feel great. Ha!

Since this last episode before the RAI’s I am no longer able to eat so so so many other types of food. Things like apples, oranges, night shade veggies, nuts, legume beans, and much more…

Celiac and thyroid problem which one came first?

I was wondering also about autoimmune diseases because I honestly -- know nothing.

All I know is about 10-years ago my ex-hubby (not a doctor but we owned a chain of medical centers) he marched me around to all his doctor buddies they diagnosed me with all sorts of things, migraines, IBS, and etc. One was an autoimmune disease, A-type? I think I’ll go look it up in my medical files to be more accurate. I really don’t know what it means; or how it affects my other health issues.

Lately I have been doing a family tree and in reading my grandfathers death certificate I see he had an autoimmune diseases along with some of the diseases – chrissy – posted.

teebs in WV --

I will write too. Do you have addresses of the major news media outlets you can post here??

I really think we will have better luck, since the peanut kiss death...

Very informative posts... My head is spinning trying to understand good and bad tests.

I started seeing an ALLERGIST last year who said he treats celiac disease patients. I had a series of blood tests by a clinical lab called METAMETRIX. A huge waste of $$$. I believe the tests are not accurate and after I went through all the tests the doc admitted they [are NOT reliable]. HA! Why is it when you tell the doctors you are cash pay and m-o-n-e-y is a big issue and I have a hard time buying food, let alone pay thousands for needless worthless test they stick it to ya anyway. It's beyond me. Do the doc's not listen to what we tell them? I know they don't care!

The METAMETRIX test did not show I have a problem with WHEAT, DAIRY, OATS, PORK, ORANGES, or the other things I know I can't eat. Why? Why? The thing the test did show was that I'm high on the response to SOYBEANS. So I spent all that money for what?

I told him I can't afford more needless tests. Then the doc talked me into food allergy scratch tests more $$$$. Let me say I don't have asthma or breathing problems, maybe a few things like rag weed or northern plants that causes sinus problem as a teen. I've been living in Florida 20 years and no longer around those allergens. The girl that tested me was a doll; she was sweet and very helpful. First they made up histamines for me, I don't really understand why. You must put a drop or two under your tongue to prevent a reaction when you come in contact with allergens. The histamines made me a little dizzy and felt like I needed to lay down about 15-minutes after the drops. After that type of reaction taking it a few times, he told me to stop and throw the small vial out. More $$$ for nothing!

I asked about them doing a celiac disease profile. Although I know I have celiac disease, I'm not sure how it will change things for me (I'm gluten & dairy free 4+ years). They told me they don't do the blood work for the Celiac Profile I would have to go to Quest. Quest told me the tests are $700.00 for cash pay without insurance. Forget that!

Next -- The doc started me off scratch testing the foods I eat every day/week to see if they are the cause. I have moderate problem with bananas, beef, broccoli, carrots, chocolate, citrus, coffee, green beans, pineapples, rice, soybean (the other test said highly), tea, and turkey. << Those foods are what I live on. Higher allergic are apples, coconut and a few more.

I stopped scratch testing because I was feeling sick. The allergist doctor made an antidote SHOT for the things that the scratch test showed I have a problem with. It was $300 prepaid to prepare the antidote. I had ONE antidote SHOT and I got sick, it was before I knew my tooth was an issue. I look back in retrospect, I had a broken back tooth that was infected after taking penicillin based antibiotic (I immediately all over felt better), then I had a crown and root canal and fixed my tooth . I haven't been back to the allergist since to get more shots I'm not sure I want to waste anymore $$$ on scratches. I know I have serious food allergy problems more then gluten & dairy, and as time passed they are getting worse. Anyone know what that happens?

I know my celiac friends here are so helpful and know a lot more then the docs that treat us.

So what does everyone out here in cyberspace think of food scratch testing? Has anyone else had food allergy shots, for celiac disease?

Open Original Shared Link

I'm the same way... I keep a celiac journal everything that goes in my mouth, everything I do and little things like if I have had steatorrhea or just diarrhea, also night sweats and etc. I can't find and common thread.

Anyone know what is the cause?

Could it be you were having fun with hubby (love & laughter heals a lot) and that's why you were feeling better?

Anyone read da vinci code? -- catch the part about food alergy death?

Poison Control 1-800-222-1222

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.