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How Many Of You With celiac disease Have Sleep Apena?


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33 replies to this topic

#1 Judyin Philly

 
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Posted 17 January 2006 - 07:31 AM

HI
I'm really having a problem with my nasel pillow mask. I put a post on earlier and didn't get many responces so thought i'd try this poll option. I've never done a poll before but here goes...
I'm sure since so many people are having sleep issues ( did a search and found so many posts on this)
I know i can call the company but wanted to hear from the 'real experts' as you are the users and thought so many might have some ideas.
One nite i woke up and the hose was wrapped around my neck. Found if i put a pillow under my knees it keeps me from moving around so much.
Last nite I was sent to the guest room again....UCK! Hate to keep my dh awake and he's been so supportive of the noise etc but this has been a problem for the past week.
Lost 35 #'s but thought that the pressure was only a problem if you gained weight.
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
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Judy in Southern CA

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#2 sneako

 
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Posted 20 January 2006 - 10:41 PM

I was diagnosed with Abnormal Sleep Apnea mid 2005. Said it was abnormal cause I had far more "awakenings" from the lack of oxygen, but I wasn't actually awake, then the normal sufferer.

Since receiving the device, I have logged ~800 hours on it, faaarrrr below using it every night. Now, using it I have never really felt awake at all. I'm always still tired and zone out 90% of conversations I'm in, and even while typing this very sentence I can't really focus on anything.

I also take seroquel as of a few weeks ago, which knocks me out within 45 minutes, and I wake up 10 or so hours later with a hangover.

Anywho, I use a ComfortSelect Nasal Mask with headgear, Small ( http://cpap-supply.c...?prodid=1007930 ). It fits snuggly, and rarely falls off, but if it does then my machine ( REMstar Plus with C-Flex ) will beep at me and wake me up just enough to get it back on.

OK...now..for the constant tiredness..why am I always tired? If I use the machine for a month every night, still tired.

Also, over the past few months my nose tends to start getting sooo blocked up from something with it on that I have to take it off halfway through th enight. Doc gave me Flonase, but that doesnt seem to help too much.

At the initial fitting for the machine, and receiving the machine, the worker person said that every month I will receive a new mask. But I have yet to actually hear anything from the company since obtaining the machine.

PS: I'm using level "7"
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Mike
Denver, CO

Diagnosed Obstructive Sleep Apnea (on CPAP) 7/05
Possible Eczema on hands and feet 10/05
Possible DH 12/05
Diagnosed Celiac Sprue (one of two blood tests positive) 11/05
Found out about my Dermatographia (in family history) 12/05

gluten-free since 12/23/05 (glutened three times)

grandfather (dads side) was celiac (he didnt do anything about it)

#3 Guest_SusieQ_*

 
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Posted 21 January 2006 - 08:09 AM

Hi Judy,
I have a remstar C Flex. Small mask, however, I need a petite. I have a gel mask. I didn't get the nasal one because I figured it would irritate my nose. Looks like it would be great not to have so much mask, but I just didn't think it would work for me.

I do get the tube wrapped around me sometimes, but generally it isn't a problem. Just irritating at times.

I still have fatigue. However, my earlier dx. was fibromyalgia which is a sleep and pain disorder. Made me feel a bit better, but not a cure for the fatigue. 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.

So, gradually seem to be getting less tired, and i just pray the improvement keeps up. The weight loss is great for you. (I hope to start loseing weight with going gluten free) Perhaps if you lose enough weight you won't need the sleep apnea machine anymore.
Susie
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#4 Judyin Philly

 
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Posted 21 January 2006 - 09:26 AM

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
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Judy in Southern CA

#5 Judyin Philly

 
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Posted 21 January 2006 - 09:39 AM

Icolor=#FF0000]
OK...now..for the constant tiredness..why am I always tired? If I use the machine for a month every night, still tired[/color].

---I use CVS or Acme--'equaline saline nasel spray before bed and when i wake up Also, over the past few months my nose tends to start getting sooo blocked up from something with it on that I have to take it off halfway through th enight. Doc gave me Flonase, but that doesnt seem to help too much. Use the flonase when my ears get blockedAt the initial fitting for the machine, and receiving the machine, the worker person said that every month I will receive a new mask. But I have yet to actually hear anything from the company since obtaining the machine. Not surprised but am surprised they'd give you a new mask every month..mine is 6 months and Ipaid for my last one when i changed to the nasel pillows. I'm a 10 but hasn't been cke'd for 4 years and i have a OLD machine. which i had one that beeped...so much research to do...grrr.PS: I'm using level "7"

let's keep in touch too
Judy in Philly

ps ck'd out your mask and it's kinda like mine..all over the face
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Judy in Southern CA

#6 slimdee

 
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Posted 29 January 2006 - 08:59 AM

Judy in Philly

I am gluten intolerant and have my endoscope done tomorrow tested high with the blood test. I also have sleep apnea and use the ResMed CPAP machine with the full face mask. At my check up the nurse thought I should have the nasal mask tried that and it blocked or swolled up my nose so bad I couldn't breath. The Physicians Assistant thought that I was not cleaning my humidifer on the machine thoroughly and getting bacteria in my nose. Also had a very dry nose and bleeding every other nite before bed with a humidifer in the house, but it is dry at my office where I work. Well I switched back to the nasal mask and no more problems. I also was instructed to use any over the counter saline solution in my nose when I woke up and blow it 2 times and then use my Flonase 2 sprays in each nostril. I think this helps also said I would feel better when I get off the gluten which I had to go back on for 30 days to do the scope. I felt better gluten free but Dr wanted to test.
Keep in touch.
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#7 Judyin Philly

 
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Posted 02 February 2006 - 06:52 PM

Judy in Philly

I am gluten intolerant and have my endoscope done tomorrow tested high with the blood test. I also have sleep apnea and use the ResMed CPAP machine with the full face mask. At my check up the nurse thought I should have the nasal mask tried that and it blocked or swolled up my nose so bad I couldn't breath. The Physicians Assistant thought that I was not cleaning my humidifer on the machine thoroughly and getting bacteria in my nose. Also had a very dry nose and bleeding every other nite before bed with a humidifer in the house, but it is dry at my office where I work. Well I switched back to the nasal mask and no more problems. I also was instructed to use any over the counter saline solution in my nose when I woke up and blow it 2 times and then use my Flonase 2 sprays in each nostril. I think this helps also said I would feel better when I get off the gluten which I had to go back on for 30 days to do the scope. I felt better gluten free but Dr wanted to test.
Keep in touch.



Hi
I thought that I wrote you a PM seeing how you did with the scope test.
How did it go. I've been thinking of you. Hated it that you had to go back on gluten...
Please give me a update.
I've been on the phone most of the day about my CPAP and they want me to come back in for another sleep study since losing weight and tossing and turning all nite..hubby won't sleep with me :( actually i moved to guest room cause i love him :lol: and now my kitty won't even sleep with me either... :( can't blame them.
I want to get this fixed and get back into my old bed with the hubby. :lol:
Seems i have the same old machine you do. got mine in 2002 and they didn't have the humidifier ..think i need it as I get nose bleeds with the nasal mask too and have gone back to full face and noticed now it has a big tear and crack in the plastic holder...
Judy in Philly
I'm still having so much trouble
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Judy in Southern CA

#8 Janine

 
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Posted 02 February 2006 - 10:59 PM

Hi Judy--

I strongly suspect I have celiac (had the blood panel today- my neurologist said it was a possibility that apnea could be caused by celiac -which I brought up- , as celiac "causes all kinds of neurological problems"). I was diagnosed with sleep apnea in August. Woke up from stopping breathing 18 times and hour and from leg movements 110 times an hour! I had no idea. I have restless legs, but I thought they stopped when I went to sleep!

ANYWAY, I have been working on trying to find the right mask for about 3 months. I am on my third one! First I had a hard plastic over-the-nose one that moved too much and leaked air all the time. Then I got a better one that went over my nose, but it drove me crazy because it pushed on my upper lip all the time. Both of those had face straps that drove me nuts because they smashed into my face as I am a side sleeper. My latest one is a Puritan Bennett Breeze SleepGear nasal pillow mask. It has the litttle "pillows' that go into your nose a bit. Weird to get used to the in the nose thing, but I find the headgear much more comfortable because the straps are up higher and I don't have to lay with my face on them. They switched me to a machine with a humidifier to help with the dry nose that can occur with nasal pillows. I also had them up my pressure a little (from 10 to 12) because I was still waking a lot. In my sleep study they never got me completely improved with the CPAP machine, so we are still messing with the adjustments.

I think it is essential to find a mask that you can stand. Also, make sure nothing else is keeping you awake. Now that I am occassionally actually sleeping, I notice that my husband's snoring and my dog jumping on the bed also wake me up. I am sleeping on the futon on the living room for the last two weeks to try to adjust and figure things out. I miss my dh too!

About the neck wrapping thing...I'll bet you are not sleeping soundly and that is why you are still moving. I move much less when I have a good night. Also, the Breeze Sleepgear that I have now has the hose going up and to the top of my head, so it is not right there by my neck. Much better! I have also noticed that while sleeping on the futon, the hose can go up over the head of the "bed" and so I am not fighting it so much when I turn over. I might see if I can move my bedroom bed away from the wall and keep the CPAP above me when I move back in to my room :rolleyes: !

I am curious too who has sleep apnea and celiac. Did you make a poll somewhere or are we just answering here in messages?

Be well,
Janine
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#9 debmidge

 
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Posted 03 February 2006 - 02:53 AM

I suspect my sister in law has undiagnosed celiac (for many years now) and also has sleep apnea (she's very thin , but she smokes, doesn't drink - as they say that drinking even one drink before bedtime can give you apnea - doesn't have nasal allergies).
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#10 Judyin Philly

 
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Posted 03 February 2006 - 08:31 AM

Hi Judy--

my neurologist said it was a possibility that apnea could be caused by celiac -which I brought up- , as celiac "causes all kinds of neurological problems")
. IANYWAY, I have been working on trying to find the right mask for about 3 months. I am on my third one!
the Breeze Sleepgear that I have now has the hose going up and to the top of my head, so it is not right there by my neck.
uch betterM! I have also noticed that while sleeping on the futon, the hose can go up over the head of the "bed"
I am curious too who has sleep apnea and celiac. Did you make a poll somewhere or are we just answering here in messages?
Be well,
Janine


Janie--I'm so greatful for your info . I'm just so goggy this am had to do colors to try to reply in a short time.
1. wow i didn't know that...he really said that? I didn't even know there was such a disease when i went in 2002
2.Did you have to pay for each mask. I had to pay out of pocket $237.00 becasue it wasn't time to order a new one have to wait 6 months. Hell but then i could be dead. I have KeyStone East it's a federal gov plan but others can have it too but that's my group plan. dh just retired and as his prestent they raised the monthly payment for us to additional $200.00 a month :(
3. Do you have a web site for the machine and mask your now using? if so can you send it to me just to tired to google it... <_<
4.I do have the hose hooked on a pillow so it stays UP during the nite.
5. Yes, i tried to do a poll with one of the post (as you see i've done 2) I couldn' tfigue it out if you can i'd be so greatful.
my brain is dead going to get off.
i so appreciate all your time, and knowledge your sharing.
judy in philly
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#11 Janine

 
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Posted 03 February 2006 - 06:10 PM

Hi Again Judy-

Glad my info helped. I feel like a real newbie to this, but I have had great sleep techs and I have learned to ask a LOT of questions :lol:

Here is a link to info (including a clear photo) on my Puritan Bennett Breeze Sleepgear nasal pillows mask:

http://www.puritanbe...=SPT&S2=&id=233

I like it best of the three masks I have tried. They also make one with a "dreamseal" which I may try. I have been very fortunate that the sleep center is letting me rent various equipment (the insurance co. is paying) for about 2 months to see which works best. They are really good and I think rather progressive. I actually got to have my sleep study in a Red Lion Hotel room! Really- they set up 4 sleep study rooms in the hotel next to the hospital. Very nice breakfast in the morning too! Ha- besides the being wired to everything, it was like a mini vacation.

You also asked if my neurologist really said >yes, celiac "causes all kinds of neurological problems"<. He sure did. After 2 months of limited symptom relief he said don't give up on the sleep apnea CPAP (he said it takes people a few months to get used to the equipment, etc quite often) , but that if i felt i might have celiac, I should have the blood panel again.

One thing I would really like everyone who reads this to hear is that it's SO important to find a really good doctor who will listen and talk. I have been to doctors my whole life for allergies, stomach problems, and migraines...and I no longer put up with "blah" doctors. It is worth it to keep looking for a good one.

Hey- and I had a small success last night. I slept all night in my very own bed and didn't get kicked out or anything :P ! I think I might have slept pretty well. Could it be true??? We'll see how it goes tonight, but I think it did help to get used to the new mask on the futon in the living room without dh and the dog!

Keep trying!
Janine
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#12 Judyin Philly

 
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Posted 09 February 2006 - 10:03 AM

Hi Again Judy-

Glad my info helped. I feel like a real newbie to this, but I have had great sleep techs and I have learned to ask a LOT of questions :lol:

Here is a link to info (including a clear photo) on my Puritan Bennett Breeze Sleepgear nasal pillows mask:

http://www.puritanbe...=SPT&S2=&id=233

I like it best of the three masks I have tried. They also make one with a "dreamseal" which I may try. I have been very fortunate that the sleep center is letting me rent various equipment (the insurance co. is paying) for about 2 months to see which works best. They are really good and I think rather progressive. I actually got to have my sleep study in a Red Lion Hotel room! Really- they set up 4 sleep study rooms in the hotel next to the hospital. Very nice breakfast in the morning too! Ha- besides the being wired to everything, it was like a mini vacation.

You also asked if my neurologist really said >yes, celiac "causes all kinds of neurological problems"<. He sure did. After 2 months of limited symptom relief he said don't give up on the sleep apnea CPAP (he said it takes people a few months to get used to the equipment, etc quite often) , but that if i felt i might have celiac, I should have the blood panel again.

One thing I would really like everyone who reads this to hear is that it's SO important to find a really good doctor who will listen and talk. I have been to doctors my whole life for allergies, stomach problems, and migraines...and I no longer put up with "blah" doctors. It is worth it to keep looking for a good one.

Hey- and I had a small success last night. I slept all night in my very own bed and didn't get kicked out or anything :P ! I think I might have slept pretty well. Could it be true??? We'll see how it goes tonight, but I think it did help to get used to the new mask on the futon in the living room without dh and the dog!

Keep trying!
Janine



i sent you a pm but might just post here as i'm so bewildered :blink: :blink: :blink:
tried 3 masks and techq's helpfull...your so lucky.
think ill jsut do a post here to.
judy
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Judy in Southern CA

#13 Judyin Philly

 
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Posted 09 February 2006 - 10:17 AM

i sent you a pm but might just post here as i'm so bewildered :blink: :blink: :blink:
You tried 3 masks to find best fit and your techq's being so helpfull...your so lucky.



Hey folks, n
need some help here. I know from people telling me that are alot of people with celiac who have sleep apnea..and wear masks.
I wonder why no one is cking on the poll??
It doesn't take time???
I've met some people on that other thread I put up --and did I sent someone the links to the forums on s apena?

Question:

last nite fell asleep in the the guest room watching the emmys and slept there all nite without putting the mask on b/c fell asleep.
this am woke up 'feeling great' and now a little brain fog but fibro is gone..I know the mask if making noise maybe there's air leak and the mask makes me breath harder???
I called the sleep disorder clinic b/c they were to call me back.-- mon, tues and wed went by called last nite and got attitude..."what did i expect them to do"???

Well maybe get me for a sleep study????--b/c the dr won't see me without one..ok they'll see me in late april...
told them not acceptable...my full face plastic mask is slit ---the nasel pillow i BOUGHT WITH MY OWN $$ --not working makes me have nose bleeds, no don't have a machine with humidifer...seems i didn't even get a choice to have one..didn't know there was such a thing==and no support person to assist me== came in the mail...
now taking parts of masks and hoses to 'gerry-rig' the thing.

I'm going nuts here.
please don't tell me to be more assertive...I've been that way--- but so politey for the whole week .They'll what the hell else can i do i didn't do.l
My dr has been out sick other wise i'd have him call at this point.
Thanks to the threads I've been given I see there are so many choices out there but know what you get is dedicated by your insurance. we're leaving for CA in March so would like to get this done.

they scheduled the sleep study for Valentine's nite....ok got that done..how do i handle what they let me get.


judy
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Judy in Southern CA

#14 Janine

 
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Posted 13 February 2006 - 08:59 PM

>>they scheduled the sleep study for Valentine's nite....ok got that done..how do i handle what they let me get.
judy


Judy-

It's great you have another sleep study. At least you were able to get them to do that! Good job!

I think the best thing to do is to keep telling them things don't work when they don't. If I had never asked for help with my masks, I would have just been stuck with the first one they gave me. If the insurance company is going to pay for an expensive sleep study, I shouldn't think they would want you to be unimproved just because of a (relatively cheap compared to doctors, etc) mask. There are soooo many kinds of masks. Ask the techs what is available and see if anyone at the sleep clinic can tell ou specifically what your insurance will do. Will they let you rent equipment to try it out? Can you return an unusable mask? Stuff like that. A lot of my techs have had sleep apnea. I asked them what mask _they_ use!

GOOD LUCK! I'll be sending you good thoughts!

Happy Valentines Day!
:P
Janine
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#15 Judyin Philly

 
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Posted 14 February 2006 - 06:00 AM

Ask the techs what is available and see if anyone at the sleep clinic can tell ou specifically what your insurance will do. Will they let you rent equipment to try it out? Can you return an unusable mask? Stuff like that. A lot of my techs have had sleep apnea. I asked them what mask _they_ use!
GOOD LUCK! I'll be sending you good thoughts!
Happy Valentines Day!
:P
Janine

Janie--
Thanks so much for all the good info.
I'll ask them these questions and am taking all my old masks and machine in for them to ck.
I called yesterday to ask if I brought all this 'stuff' in if the tecqs could look at them..was told not sure those techs who do studies would know..the person in charge works days;
I just feel like i'm banging my head against the wall. At this point with our trip comingingin 2 weeks i'm sticking with this clinic but i'm wondering now if i shouldn't go to different clinic since my original dr has left there...wonder why :ph34r:
Thanks for your thoughts and concern.
juyd in philly
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Judy in Southern CA




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