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How Many Of You With celiac disease Have Sleep Apena?
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34 posts in this topic

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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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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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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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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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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For those suffering from sleep apnea, there is hope. I know the CPAP machine..well, sucks. But there is a special pillow designed to fit the mask or nasal pilows and help wild sleepers keep the cord in place so it doesn't get tangled.

try (Company Name Removed - They Spammed This Forum and are Banned) sleep apnea pillow by CPAP

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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

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

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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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

I am curious if Sleep Apnea is related to Celiac. I was diagnosed with Sleep Apnea 5 years ago and went through several masks and was never really happy with the results. I think partly because I am a women and my hair would make the masks slip off. Anyway 2 years ago my sleep doctor said I may do well with a mouth piece to wear at night. It brings your lower jaw forward. At that time my insurance would not pay for it but now it does. A dentist does all the work and it did cost me 300 dollars but it is wonderful. It is so much better than the C-Pap. I would recommend it to anyone who has Sleep Apnea and confirm that you may do well with just wearing something that pulls the jaw forward.

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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

I am curious if Sleep Apnea is related to Celiac. I was diagnosed with Sleep Apnea 5 years ago and went through several masks and was never really happy with the results. I think partly because I am a women and my hair would make the masks slip off. Anyway 2 years ago my sleep doctor said I may do well with a mouth piece to wear at night. It brings your lower jaw forward. At that time my insurance would not pay for it but now it does. A dentist does all the work and it did cost me 300 dollars but it is wonderful. It is so much better than the C-Pap. I would recommend it to anyone who has Sleep Apnea and confirm that you may do well with just wearing something that pulls the jaw forward.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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