Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Many Of You With celiac disease Have Sleep Apena?


Judyin Philly

Recommended Posts

Guest SusieQ

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.

  • 3 years later...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



trixiesirisheyes Newbie
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.

  • 1 month later...
heather201 Newbie

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.

  • 1 month later...
Quasior Rookie

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.

Cranberry7 Newbie

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

  • 3 months later...
LD89 Newbie

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

  • 2 months later...
Guest sueward

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bincongo Contributor

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.

bincongo Contributor

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.