ms-sillyak-screwed

SOUTH EAST FLORIDA CELIAC SPRUE SUPPORT GROUP

I created this web site for them you can visit it for more information...

Open Original Shared Link

Copy and paste it in your browser window if a link doesn't pop up.

I'm Sleepless in Florida

~ Hi all my celiac cyberspace friends!

Since I was a kid I was up late, I was born at 1:00 am if that matters. My body clock seems to be set much different than most people.

I alway had a problem getting out of bed in the morning. I remember as a kid, and teen years, my dad would pull the covers off me, grab me by the ankles and pull me out of bed on to the floor to wake me up early mornings. As a teen, 20's, 30's and into my 40's now I'm up all night. I generally wake up around 10:00 a.m to 11:00 a.m. It seemed I would wake up and get a second wind around 10 or 11:00 p.m. I would go out dancing all night and come home around 3:00 am. Or when I had a hubby I would go to bed when he did but would get up when he fell asleep and would go out to my home/studio. I'm an artist, and all and all creative soul that does my best work at night. Some times I'm up until 4.

I don't know if it was insomnia, because I would get 7 or 8 hours of sleep and I feel rested for the most part. I slept sound. I was just living on the USA east coast but my body clock was on west coast time. (giggle)

Even now with this illness I have tried to reset my body clock. It's so so so hard...

I have lived with celiac disease gluten-dairy free for 4-years and been okay until a major flare up and stress with my thyroid problem. Now sleep is a major issue. I have so many symptoms now and insomnia IS a problem.

I find that what does help me fall asleep. I take my little Italian dog GOOMBA for a walk for a mile or so in the evening around 11:00 pm. (The weather here is always beautiful.) I force myself to go to bed no later then 1 to 1:30 a.m. Then with dim lights or candles aromatherapy in the room or aromatherapy spray on the pillow bed sheets. I take a shower or bath with aromatherapy oils and read my Bible or a book if I'm not relaxed enough. I will relax with no outside stimulation. NO TV it makes me wired, a radio wakes me up and not even a alarm clock in the room. If I don't fall asleep after 15 minutes then I take something. Only since I've had this thyroid flare up on occasion have I had too, when I feel racy, my heart goes into palpitations or etc. I feel better in the morning and though out the day when I get deep sleep uninterrupted.

As I look back I wonder if when I break this routine (I started a few weeks ago) its the reason I feel really bad... Now as my thyroid is swinging between hyper to hypo I'm sleeping in the late afternoon early evening and feel like that cartoon where I'm dragging myself around by my collar.

I have always been an UP positive person alway on the go, I hate feeling depressed

My question is there any common thread between my sleep patterns and feeling so bad? Is it just my thyroid is killing me? Or I'm not getting better because of my thyroid problem and sleep?

Anyone out there on Celiac-cyberspace have any answers I welcome them?

Thanx and sleep well my friends!

judy04 - Thanx for the info about AMBIEN. My thyroid doc game me a Rx for it and I was unable to get it filled at $130.00 for 30 pill. The sticker shock got to me (Ooch! I have no health insurance). I went back and she game me somethng else the other day (I wish I wrote it down so I could share it with the group) it had dairy in it. I returned it and never took it either.

I have been taking LORAZEPAM, when I get stressed, my heart races, can't sleep or when I have one of my seizures. It does help take the edge off. But my face, eyes, and gands get puffy when I take them for a day or so following. I'm a real life DIVA and I am super VAIN. One of my girlfriends mentioned the other day how I had puffy eyes and circles. I had been taking the LORAZEPAN the days prior to her comment. I don't know what's in them that is causing it, I'll look it up. Does anyone else here take it and have any reaction to it?

Regarding taking magnesium and the thyorid medication I just started taking... the doc told me not to take magnesium. I have a feeling she is misleading me. How should I take it?

Hi to all my celiac disease and thyroid cyberscpace friends!

I'm back again with more questions...

I had the radioactive iodine treatment to burn off the HOT NODUEL off my hyperactive thyroid about 3 months ago. Last monday the thyroid doc examined me and by feeling around said the noduel was gone and now I'm HYPO, not HYPER. MY T4 was 0.7 - T-Uptake was 23.4 - FT1 was 0.2 - THS was 72.11 she said no wonder you feel so bad! She said she wanted me to take 100 mcg of SYNTHROID. Not knowing anything or trusting the doc's here in Florida I questioned her and said. "I'm hypersenstive to everything I take, should I take that much?" She said, "...take 50 for a week the go up to 100."

She went to her medicine closet, instead she gave me LEVOXYL 50 mcg and some 100's of LEVOXYL. When I got home I noticed they were expired a month but took them anyway. She said take 50 for a week see how you do and increase it to 100. When I increased it from 50 to 75, I was okay and had a two very good days on the 75mcg. After a few days I bumped myself up to 100 I got sick again (diarrhea, feeling very irritated for no reason, weak like I was going to passout) so I have been taking 75 mcg for the last few days. I'm taking naps in the afternoon, migaine headaches, constipation then diarrhea. I'm hot when I sleep at night and when I wake up in the morning too. I don't have the heart palputation anymore like before < Thank God! My hands are burning, thingling, numb, like my diabetic 84-year old dad describes as his neouropthy.... Do I have that too now? Will it go away when I get better?

Can anyone tell me what is going on... What can I expect? How long will this take to feel better? I'm feeling depressed! All my life I've been an Up-Person! Is my body trying to balance itself out? Should I take 100 mcg? Or switch to a different thyroid med? Am I being impatient?

Oh, pleeeeeze help.

I have had the worst 9 months of my life lately. Since I got celiac disease in 2001 and put myself on a strick diet and lifestyle change I was okay for 4 years, (or so I thought), then major stress hit me and my thyroid grew this noduel and wham bam I've been blindsided with this and feel like I'm never gonna get better....

Please anyone have any answers I would welcome them.

Thanx < I feel like this!

Thank you all my Celiac cyberspace friends!

I printed out your posting and dad and I read though them. Thanx! You have all made it easier for us to understand and cope...

And perhaps someday when I meet a nice guy and can travel again to europe or some far off fun spot like I use to do, I can use all this helpful information all of you have given me, and I can have FUN again.

My rock star brother has let [stardumb, fame and b*tch bridezilla] get to his head. They have NO compassion for my illness and could careless about the me traveling to a third-world country. After speaking with him I understand the REAL reason, I no longer have a brother...

I will do exactly what - ajlauer and Maggie1956 suggested. plantime I found comfort in knowing you have a SIL and brother that would do the same thing. I don't feel so alone.

I will plan something else that weekend. After all ~ it's my birthday that weekend too! ;-D

Thanx again!

PS - ajlauer - The band is in the top single didgets on the record charts.

Thanks for the ideas...

Please keep in mind the WEEK-LONG wedding is in a tiny spot in CanCun on a beach. There will little for me to choose from on a menu. The B*tch Bridezilla has planned this wedding there because she HATES me and my dad, its a known fact. It's the real reason. She knows my health issues. My Rock Star brother has a problem with shyness (although can perform in front of thousands and thousands of fans) he lets Bridezilla control everything.

With my celiac I am hypersenstive to EVERYTHING -- My celiac friends, I have the ULTIMATE CHALLANGE!

I can NOT eat anything CORN, RICE, POTATOES, GLUTEN, DAIRY, CHEESE, BUTTER, SOY (it is a big no-no too) NO peanut butter, rice cakes, as well as limited types of NUTs also. Some VEGGIES ARE LIMITED too with my thyroid problem. No Onions, TOMATOES, Garlic, the list is too long to list... Veggies have to be steamed... FRUIT NO ORANGE, CRAPFRUIT, CRANBERRY, I can only tollerate only melons and some berries at this stage with my thyroid problem. BANANA are my best friend! I eat plenty each day 3 or 4...

Most of what I eat is like a cave man/woman CHICKEN, STEAK, BURGERS, TURKEY, all GRILLED- BAKED or BROILED. JUICE fresh sqeezed carrot celery, zuccini, juice. Or bottled grape juice... DISTILLED WATER, not spring or filtered tap (it maked me ill) I drink a lot of plain PEDIA LYTE baby electrolytes does wonders when I'm sick.

Mexico is a country they tell us DON'T DRINK THE WATER, remember? And if they wash the raw veggies I'm in big trouble. And to bring fresh fruit and most food in though MEXICAN customs creates another problem. You aren't allowed too.

So? What do you think now???

Hi my celiac friends in cyberspace! I'm looking for some help with cross-contamination issues.

I have my 84-year old diabetic father that lives with me winters here in sunny south Florida. He eats everything, and anything he shouldn't, wheat, bran, flour, bread, oatmeal, cookies, dairy, ice cream everyday (he says "It says NO sugar added! It's okay!") faux sugar, and on and on. I keep telling him he has major food allergies he doesn't want to hear it. I believe it is causing his neuropathy in his feet. I might go with him to the doc next time and get him tested.

But, I'm really wondering about how all the crumbs, dairy and etc., he leaves behind are effecting me? The Windex and 409 bottles have become an appendage from my body cleaning the cooking surfaces and countertops. Everything goes in the dishwasher. We use the same sponges, I throw out every few days. I don't use teflon, although he has two pans he uses in the same cabinet -- I have stainless pots and pans and spatulas. Except one he uses that is in the same drawer. I don't use wooden or plastic spoons spatuars anymore either.

He keep all his cereals, breads, cookies, goodies on top of and in the fridge, and makes a couple of midnight kitchen raids in the middle of the night in the dark, then he's up before me and make breakfast, waffles, pancakes and etc. I wake up to a mess every a.m. I'm not complaining. I LOVE my daddyO and wouldn't trade him for anything.

But I'm wondering if tiny little particles are somehow getting into my system? My gluten and dairy free diet is very limited lately since my thyroid problem isn't under control yet. I just started thyroid meds a few days ago but they haven't taken effect yet. I stop my enzymes and immonogoblin (although they were helping me) because they were way too costly... When I can afford them I will go back to taking them soon.

What do you all think about cross contamination?

Please help!

Hi all my celiac friends in cyberspace!

Please I welcome your thoughts and ideas. My brother (is with a famous Rock'N'Roll Band) and is getting married in December on my Birthday in CanCun, Mexico and he is flying in all the guests. (but not a private chef) I have been deathly ill with celiac and thyroid problem I still don't have under control. I just started thyroid meducation that hasn't started taking effect yet.

I know I can't travel to a third world country and eat the food, no less speak the language to ask them to prepare, gluten, dairy free diet. I'm hypersensitive to other food alergies with the thyroid too. I don't trust it... I'll be in hospital montazoomas revenge (giggle) with in hour... They won't know how to understand or treat me, I know.

I live by the lifestyle, play it safe, eat at home, and go to the event, have a wonderful time and pick on things that are 'safe', it has always worked for me in the past and I enjoyed myself... But under the circumstances, it's imposible.

But this is creating a huge riff in my family. The bride is a b*tch we all have asked them to please reconsider and have the wedding here in the US someplace -- she out-and-out refuses. My brother says, "It's the brides day!" and my father and I are at a point we don't want to go...

Any ideas? I welcome any and all in put...

Thanx

mela14 -- I also had a total hysterectomy about 10 years ago at a very young age (30's) I took hormone replacement through a little patch I wore on my fanny or tummy. I also had many gyno surgeries and suffered my entire life with endometriosis too. My Gyno doc by accident gave me a double dose of patches I wore for about a month prior to >>> I peeled off the patch at the same time I came down with my very first violent attack of celiac sprue 4-year ago and at the same time was under the most unbelieveable stress a human being can endure.

I have done some research that women who are post total hysterectomy have a higher rate of thyroid problem then any other illness. My gyno doc (a lady) said it's my thyroid making me ill giving me sprue. My throid doc (a lady) doesn't agree. It can all be confusing. We have to some how tune in and listen to our bodies I guess?

Have you had your thyroid levels checked? What are your other symptons? I felt like a motor was running when I was horizontal, hot or cold hyper or slow at times...

I can't do Garlic supplement it sets me over the edge too. If you would like I will share with you some of my symtons too. Just let me know.

Sending you well wishes!

mela14 -- Hi I suffer from the same thing. NO potatoes at all anymore!!!

I was told by a nurse that [some of us] can NOT process RICE, CORN & POTATOES. Because it's some sort of carb. I found this to be true following my last flare up.

If you notice my profile following understanding the celiac illness I was faced with - I instantly went on a strict GLUTEN FREE - DAIRY FREE strick diet. It only took me a few months to feel better, for 3 or 4 years and got healhty. It worked, however; I ate rice, corn and potatoes (+ rice cakes & gourmet veggie Tarra chips, yummy, Fredos corn chips too). Then following unbelieveable major stress I had a big bad fare up, but that is when I developed this thyroid problem that is now making me super ill.

A nurse turned me on to a great book -- "BREAKING THE VICIOUS CYCLE - Intestinal Health Though Diet - by ELAINE GOTTSCHALL B.A., M.Sc." You can find it in Amazon or online Barns & Noble. It was helpful for me to understand more about Celica Disease. It's worth reading, in addition she lists some really good yummy recipes.

NOTE: I'm dairy intolerent since birth. I can't do the dairy recipes. This encludes EGGS too! So I have the untimate challange with all of this, and now with my thyroid out of whack and NOT on thyroid meds (yet) I'm staying away from iodine producing foods as well. (I have an appointment with the thyroid doc next week.) I'm hyperthyroid one minute and hypo the next. I think my body is try to balance itself out but might have produced another nodule, or the treatment didn't burn it off?

mela14 - Try to stay away from the potatoes of all kind and see if that will help. Oh and get the book too. The nurse told me once I got better, after following the book direction, try to reintroduce these different foods and through process of elimination slowly.

Good Luck -- I hope this helps and God Bless you!

[-

Yes, I'm taking ENZYMES and having good results. I am unable to eat dairy products, so I haven't tried the acidophelus (how ever its spelled) type.

I'm taking INFLAM-A-WAY from the company PREMIER LABS. The label says "HI-Potency ENZYME Formula Clinically Tested." I get it from the doc it is very expensive $$$$ 40.00 a bottle of 180 tablets. The doc has me taking 18 pills, 6 pills - 3X times a day. It's about $130.00 a month? I did it for a couple of weeks now, I've cut myself back to about 6 a day. Only because I can't afford them. I was able to find them online a little cheaper.

I don't know if this is perfect for what we have, when I looked up on the labs web site it looks like this is for people with arthritis or physical swelling and pain. I don't have any of those things since I took myself off HRT 4-years ago. I called the doc back and quizzed him on it. He said it will work for Celiac but that the manufacturer labels for the top selling ailment. I HAVE noticed a difference.

The doc also gave me (oral) IMMUNOGLOBULIN THERAPY. It tastes like drinking soap, but if I feel better, I can get past the taste. He told me this is something that AIDS patients take and mix in their cocktails. I drink a tablespoon 6 times a day in any type of drink. I mix it with water. It costs $30.00 for a half a months supply.

I have been getting good results so far.

IF YOU WOULD LIKE THE SUPPLEMENT FACTS ON THE LABELS JUST E-MAIL ME AND I WILL SEND IT TO YOU OR POST IT ON THIS FORUM.

Good Luck and stay healthy!

Hi I'm a newbie here!

I have been living healthy gluten and dairy free with Celiac for 4 years.

Until the enormous stress hit me this time I'm even worse. I had this lump in my throat. My Celiac was back and this time with a vengeance. After 4 months of not getting better waiting for a doc appointment I got involve with my local support group and found a nurse who again guided me to a great book