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How Many Of You With celiac disease Have Sleep Apena?


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33 replies to this topic

#16 happygirl

 
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Posted 14 February 2006 - 08:08 AM

susie-just so you know, i was also diagnosed with fibromyalgia before I was diagnosed with Celiac. Once I went 100% gluten free, I don't have pain anymore. I only have the pain return when I have been glutened (and it is one of the tell tale signs). I think that I was misdiagnosed and never had fibro! But, that being said, there ARE others on this board who do have celiac and fibro!
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#17 Judyin Philly

 
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Posted 15 February 2006 - 05:18 PM

Hi All
I DID A HOSPITAL SLEEP APENA STUDY LAST NITE AND HAD A PANIC ATTACK IN THE MIDDLE OF IT ..ALLERGIC TO ACITONE (?) GLUE THAT KEPT THE ELECTRODS ON IT. (that's not the name it started with a 'c'...)

DID ANY OF YOU HAVE A PROBLEM IN THE MIDDLE OF IT?
I DIDN'T THE FIRST TIME IN 2002.
WOKE UP AT 2:30 GASPING FOR BREATH, SHAKEY, INGLY, BUT I HAD A COLD AND MY NOSE WAS STOPPED UP. THE TECH WAS WONDERFUL AND SAID I PROBABLY HAD ANXIETY. WAS VERY FORTH COMING WITH INFO...SAID HE PUT IT AT PRESSURE 12 TO TEST ME...THAT HE DID...
THINK IT WAS JUST TOO MUCH PRESSURE AND PUSHING THE MUCUS FROM COLD BACK INTO MY SINUSES.

I WAS ABLE TO COMPLETE THE STUDY BUT HAVE SLEPT ALL DAY 7:00-12;30---1;00-4;00 I JUST CAN'T THINK RIGHT NOW...HAVE BEEN ON THE PHONE WITH THE SLEEP STUDY CLINIC...VERY SHORT OF BREATH..FEEL LIKE SOMEONE CHOKING ME..I'VE HAD A STUDY DONE BEFORE AND WENT OUT GARDENING WHEN I CAME HOME SOMETHING IS DIFFERENT NOW.

MY SLEEP DR CALLED ME AFTER I CALLED THE OFFICE QUESTIONING WHAT PRODUCTS THEY USED ETC.
GOOD NEWS. HE SAID HE WASN'T SURPRISED THAT I SLEPT ALL DAY AT HOME AS I ONLY GOT 2 HRS OF GOOD SLEEP IN THE LAB..NOW I KNOW WHY I'VE BEEN SO TIRED PROBABLY NEVER GOT THAT MUCH AT HOME BECASUE ALL THE AIR WAS EXCAPING FROM THE MASK.

HE'S ORDERING A NEW MASK SOMETHING LIKE THE ONE JANNIE HAS POSTED. WON'T HAVE TO FIGHT THE HOSE ANY MORE AS IT'S OVER THE HEAD. PRESSURE WILL GO DOWN FROM 10 TO 8 SO THAT'S A GOOD THING. HE'S ORDERING A NEW MACHINE WITH THE WARM WATER MIST. WILL TRY TO GET IT HERE ASAP SO I CAN TAKE IT TO CA.

SO THAT'S THE NEWS.
CALLED MY DR'S OFFICE TODAY AND THEY ORDERED BLOOD WORK FOR TOMORROW AM. KNOW MY THYROID IS LOW, I CAN TELL AFTER BEING ON IT SINCE 3RD GRADE AND SWITCHED TO GENERIC BRAND AND WAS WARNED MIGHT NOT BE AS EFFECTIVE AS SYNTHROID.
WILL DO FULL PANEL EXCEPT FOR gluten-free AS MY DR IS SICK AND ANOTHER IN THE PRACTICE ORDERED IT. BUT WILL SEE IF ALL OTHER LABS COME IN OK.

SO FINALLY GETTING SOME ANSWERS..

lOVE TO HEAR BACK FROM YOU GUYS. DID ANY OF YOU HAVE THAT HAPPEN IN THE MIDDLE OF THE TEST?
OF COURSE, NOT YOU JANNIE, YOU WERE IN A HOTEL WITH A BREAKFAST. :lol:
JUDY IN PHILLY (PARDON THE CAPS BUT EASIER FOR ME TO READ TONIGHT
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Judy in Southern CA

#18 Janine

 
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Posted 16 February 2006 - 08:38 AM

SO FINALLY GETTING SOME ANSWERS..

lOVE TO HEAR BACK FROM YOU GUYS. DID ANY OF YOU HAVE THAT HAPPEN IN THE MIDDLE OF THE TEST?
OF COURSE, NOT YOU JANNIE, YOU WERE IN A HOTEL WITH A BREAKFAST. :lol:
JUDY IN PHILLY


Hi Judy- YAY for you! You go, girl! Sounds like you are asserting yourself and getting help. Fantastic. I am so proud of you! I'll be you'll be feeling better soon.

Ha- you are right, on the second study, I knew I had a nice hotel breakfast coming in the morning and was not stressed :P . On the first one I got a little stressed, but talked myself into calming down. Still didn't sleep well either time, though.

I know my uncle freaked out during his study. He ripped off all the connections and left! Ha! So you did better than that! BTW, for anyone who hasn't had their study yet, don't worry. Mostly they just glue a bunch of wires to you and say "now enjoy your sleep" :rolleyes: .

Well, that's great, Judy! Where are you going on your trip, anyhow? Hope you can relax and enjoy it.

Take care,
Janine
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#19 Judyin Philly

 
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Posted 16 February 2006 - 11:25 AM

Mostly they just glue a bunch of wires to you and say "now enjoy your sleep" :rolleyes: .

Well, that's great, Judy! Where are you going on your trip, anyhow? Hope you can relax and enjoy it.

Take care,
Janine


Janie-Thanks for the note.
yes all, it isn't a bad test at all. as i said earlier...first time felt so great ...slept all nite like a baby and gardened all day after coming home.
i know this time since it was my second...
1. had a cold and nose so stopped up couldn't breath anyway and with the mask pressure at 12 it was just pushing the limits and i wasn't used to the high pressure.
2 if your going to have it done..it's really not a big deal...ESP IF YOU HAVE IT DONE IN A HOTEL WITH BREAKFAST :lol:
SEE I CAN EVEN PUT A SMILLY NOW.

HAD MY BLOOD WORK DONE TODAY AND RE TESTING LEVELS FOR celiac disease'
NEXT ON MY PHONE CALLING LIST IS THE DENTIST...

janie going to CA march 2nd to see our son.
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Judy in Southern CA

#20 Guest_SusieQ_*

 
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Posted 18 February 2006 - 06:09 PM

Hi Susie Q & Sneako--( sneako will write more later to you with your issues..maybe your mask?)

Susie
Thanks so the note...No time now to really write a long note but here are the main points-- and let's keep in touch ok.
can us the PM also or my email which i think is posted

Only been gluten free for a couple weeks and some of the "fibro" pain is decreasing. Perhaps it is really gluten and not fibro. Trying to figure that out.

YES, YES, YES, Susie Q-
Your on the right track.

I have so much research to do on these maks but until then-----

Been gluten-free for 6 months and fibro is almost gone ---was TOTALLY Glutened by dairy from my gluten-free lasganna I made the other nite. In the am couldn't go down the stairs for 1 hr. pain in every single joint, muscle, and man was I fibro fogged..and had a board meeting that am...of course i didn't make it...but GOOD NEWS from the bad event (so mad about dairy now grrrr) but when i made it down stairs and hubby said...what happened to you--using my 2 canes again...and i said THe lasganna....and the dairy ..he just shook his head :blink: BUT made me realize how FAR I'D COME and that i used to feel this way everyday while trying to work 40hrs a week.

I moved into the guest room for 3 nites...put on my old full face mask....and am sleeping 12 hrs a nite and not waking up to pee either....I hate not sleeping in our bed...but for now...I am getting my old self back and have energy during the day. I was all over 'our' bed--kicking my husband, mask making noises and waking him up..he'd go down stairs to sleep on couch becasue he couldn't even wake me up and i was snoring away...with the darn hose wraped around my neck... :blink:

gluten-free diet and proper mask is the answer for me...keep up the gluten-free diet and think it will work for you. I've been fighting my weight for years and this 35 # weight loss has been so easy when gluten-free.
let's keep in touch..
Judy in Philly :P



Hi Susie Q & Sneako--( sneako will write more later to you with your issues..maybe your mask?)

Susie
Thanks so the note...No time now to really write a long note but here are the main points-- and let's keep in touch ok.
can us the PM also or my email which i think is posted

Only been gluten free for a couple weeks and some of the "fibro" pain is decreasing. Perhaps it is really gluten and not fibro. Trying to figure that out.

YES, YES, YES, Susie Q-
Your on the right track.

I have so much research to do on these maks but until then-----

Been gluten-free for 6 months and fibro is almost gone ---was TOTALLY Glutened by dairy from my gluten-free lasganna I made the other nite. In the am couldn't go down the stairs for 1 hr. pain in every single joint, muscle, and man was I fibro fogged..and had a board meeting that am...of course i didn't make it...but GOOD NEWS from the bad event (so mad about dairy now grrrr) but when i made it down stairs and hubby said...what happened to you--using my 2 canes again...and i said THe lasganna....and the dairy ..he just shook his head :blink: BUT made me realize how FAR I'D COME and that i used to feel this way everyday while trying to work 40hrs a week.

I moved into the guest room for 3 nites...put on my old full face mask....and am sleeping 12 hrs a nite and not waking up to pee either....I hate not sleeping in our bed...but for now...I am getting my old self back and have energy during the day. I was all over 'our' bed--kicking my husband, mask making noises and waking him up..he'd go down stairs to sleep on couch becasue he couldn't even wake me up and i was snoring away...with the darn hose wraped around my neck... :blink:

gluten-free diet and proper mask is the answer for me...keep up the gluten-free diet and think it will work for you. I've been fighting my weight for years and this 35 # weight loss has been so easy when gluten-free.
let's keep in touch..
Judy in Philly :P



Hi Judy,

I'm sorry I didn't see your post earlier. I'm still learning. Guess I always need to check that little box to get the replies.

Anyway, I'd love to keep in touch. I'm going on about 6 weeks now with avoiding gluten. Some improvement. I seem to be resting a bit better, but, of course, still using the c-pap machine. I actually was able to get in to work a little earlier this past week. I'm usually dragging to get out of bed, and it is amazing to be able to wake up a little easier. I think it is from avoiding the gluten.

Hope to just keep getting better and better. I've lost three pounds without really trying. So, I think that now, if I'd just keep total calories down, the weight will start coming off. Before, it didn't seem to matter how little I ate, I couldn't get any weight off. I do have hypothyroidism and I imagine the gluten didn't help that any. It took a long time to get that dx. too.

Did you get a better recipe for your lasagna? What a confirmation that it is gluten and not fibro to have that kind of reaction. I'm sure hoping that all this pain will go away for me one day too. Still, I am better. One of my biggest annoyances is the pain in my arms right now. I'm so sick and tired of my upper arms hurting. Well, didn't take over-night to get like this, and I imagine it is going to take a while to detox from the gluten.

Let's keep in touch. :)
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#21 flagbabyds

 
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Posted 18 February 2006 - 07:38 PM

Sorry I didn't see this earlier, but I was on CPAP for over 2 years, and I just had jow surgery to correct it forever, now I am sleeping better than ever. I tried about 10 different masks before I found one that I actually liked. I don't remember the name of it and I am staying with my sister, so I will find out the name of it when I get home, but it was really nice.
There were some problems with the nasal pillows that I tried, they were so annoying, and I didn't like the way it felt more like an oxygen mask. It was also making me have really bad nasal problems, and I was sneezing all the time, and I had really congested nose, and all this really bad stuff, so I switched to the masks, and my sleep doctor gave me like 10 different masks at once, and I actually found one that I liked, and I still have all the other ones in my closet.

Hope you find a mask you like soon!
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#22 Judyin Philly

 
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Posted 18 February 2006 - 07:52 PM

Sorry I didn't see this earlier, but I was on CPAP for over 2 years, and I just had jow surgery to correct it forever, now I am sleeping better than ever. I tried about 10 different masks before I found one that I actually liked. I don't remember the name of it and I am staying with my sister, so I will find out the name of it when I get home, but it was really nice.
There were some problems with the nasal pillows that I tried, they were so annoying, and I didn't like the way it felt more like an oxygen mask. It was also making me have really bad nasal problems, and I was sneezing all the time, and I had really congested nose, and all this really bad stuff, so I switched to the masks, and my sleep doctor gave me like 10 different masks at once, and I actually found one that I liked, and I still have all the other ones in my closet.

Hope you find a mask you like soon!


HI
would love to know the mask you liked.
what is the surgery you had
10 to try at once..good grief what insurance do you have
they are even fighting me on giving me new machine and i have the same nasal issues you do and a bloody nose every morning...
judy
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Judy in Southern CA

#23 plantime

 
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Posted 19 February 2006 - 08:35 AM

I have apnea. By the time I found a doc that listened to what I was saying, I was in bankruptcy, and couldn't afford the sleep test to determine the severity. No test, no cpap. I take antihistamines at night to stop the mucus production, sleep on my side, and have the head of my bed elevated 4 inches. It helps quite a bit for me! My sister has a cpap, she uses a mask that covers her whole face.
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#24 Judyin Philly

 
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Posted 19 February 2006 - 02:24 PM

I have apnea. By the time I found a doc that listened to what I was saying, I was in bankruptcy, and couldn't afford the sleep test to determine the severity. No test, no cpap. I take antihistamines at night to stop the mucus production, sleep on my side, and have the head of my bed elevated 4 inches. It helps quite a bit for me! My sister has a cpap, she uses a mask that covers her whole face.

wow, this is such an important issue.
wish i had some answers for you
you do need to get this addressed and get a machine..
hope someone on here has some ideas for you
i have insurance and just did a re test and still fighting to get mine
judy in philly,,good luck
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Judy in Southern CA

#25 Guest_SusieQ_*

 
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Posted 19 February 2006 - 03:03 PM

susie-just so you know, i was also diagnosed with fibromyalgia before I was diagnosed with Celiac. Once I went 100% gluten free, I don't have pain anymore. I only have the pain return when I have been glutened (and it is one of the tell tale signs). I think that I was misdiagnosed and never had fibro! But, that being said, there ARE others on this board who do have celiac and fibro!



susie-just so you know, i was also diagnosed with fibromyalgia before I was diagnosed with Celiac. Once I went 100% gluten free, I don't have pain anymore. I only have the pain return when I have been glutened (and it is one of the tell tale signs). I think that I was misdiagnosed and never had fibro! But, that being said, there ARE others on this board who do have celiac and fibro!



Laura,
Thanks for the response. How long did it take you to realize that you were completely pain free? I think this
is going to happen for me, but I'm afraid it is going to be a slow process. The physical therapist at work says it will take a minimum of 4 months, and I've seen some say as much as 18 months.

So, instead of feeling nauseated, or up-set stomach or anything else, do you just automatically have a severe flare instead? How long does it usually last?

Thanks,
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#26 Guest_SusieQ_*

 
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Posted 19 February 2006 - 03:16 PM

Someone mentioned cost of the test and machine. My insurance didn't cover anything for me, and actually it has been good insurance otherwise.

They had a sleep study program here that I could have paid for, but it was more expensive then going to the philippines for the study. I am working on an island in the pacific. I stretched the trip out and made it a vacation so I could see the rice terraces too.

When I returned, I had to pay for the machine totally out of pocket. It wasn't cheap for any of it, but worth every penney in the long run.

I think it is awful that we have citizens that can't get proper medical care. Proper sleep affects everything.
I think when one reaches 62, can get help from Medicare on all of this. I hope that isn't too long for some to wait for help.
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#27 trixiesirisheyes

 
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Posted 11 December 2009 - 06:46 PM

I hope i hear from some of you out there with this issue of sleep apena?
I know with so many people on this board there must be alot of us out there with sleep apena
Thanks for your time
Judy


I am pre-diagnosis (negative biopsy in the past), but I have a sister with celiac and another with gluten-sensitivity (negative biopsy - Enterolabs results point to gluten sensitivity), I've had baaaadddd belly probs since I was a little girl. I'm 51 and have severe osteoporosis - so bad that in the last two years, I've lost 3/4 of an inch in height. That said, I have bad sinus problems and I "forget to breathe."

I also have moderate sleep apnea, but I refuse to do CPAP. Claustrophobic...23yo son also has mild sleep apnea, and considering how my ex snored like a freight train, I wouldn't be shocked if he had it too.

Recent immunological tests show I have an IgG2 (subclass 2) deficiency and Hashimoto's thyroiditis (the beginning stages) - both parents and three of four sisters have it. IgG2 deficiency can result in a predisposition to upper and lower respiratory infections. That could possibly be contributing to breathing issues while you're sleeping, too. Might be worth checking out.
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#28 heather201

 
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Posted 14 January 2010 - 05:08 PM

Hi, I am new to this forum not sure where to begin. I too have sleep Apena but do not use a mask because I had the surgery. I think it did work a little. Before, the surgery I was waking up 36 times an hour. I would not recommend the surgery because, it was the most painful thing I have ever had done. Some doctors won't even do it anymore.

I have just recently been told I have celiac's disease not sure if the to have anything to do with each other but it sure seems a lot of people have sleeping problems have celiac's disease or a gluten intolerance. I have been gluten free since jan 4th and already feel a great deal better. I have drive again something I haven't had in almost 18 years. The depression has gone and I am losing weight down 8 pounds in just 11 days. I hope to lose 72 more pounds.
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#29 Quasior

 
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Posted 17 February 2010 - 02:17 PM

I don't know where the poll part is but... I was very recently diagnosed with sleep apnea. Whether directly caused by celiacs or because I am overweight so indirect cause I'm not sure... but I do have the other neuralogical probls a lot of celiacs have like mind fog, memory loss etc.
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#30 Cranberry7

 
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Posted 21 February 2010 - 05:33 AM

HI all,

I just joined this group this morning,and the first topic that I read was this one. I hope I'm not too late to discuss this.

I also have celiac, and sleep apnea, and I never knew that there is a possibility that they are "linked," other than by the fact that I gained lots of weight over the last 15 years--while I was being diagnosed with everything else under the sun--such as fibro, chronic fatigue, IBS, Epstein Barr, lactose intolerance, etc. etc. I did find out that I have Hashimoto's (that one was true).

I use a CPAP every night, and I'm totally gluten free (except for accidents), but I'm not losing any weight.

I'd welcome any discussion or tips.

Cranberry7
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