Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Sleeping Disorders Linked To Celiac Disease?


  • Please log in to reply

19 replies to this topic

#16 imahurtinunit

 
imahurtinunit

    New Community Member

  • Members
  • Pip
  • 1 posts
 

Posted 05 February 2014 - 08:27 PM

I just signed on to this forum and it has made me think about my health history.  I can remember waking up during the middle of the night for hours since age of  5.  I have my whole life been extremely skinny.  Literally my whole life I have been a double zero.  I never thought anything of it.  I thought it was just the way I was.  I'd eat large pizza's in one sitting on my own.  I'd go to Burger King and get a Whopper and a large fry then on to taco bell and I'd get a beefy burrito and a taco salad with chips then on to McDonalds.  I never gained weight.  Within 3 weeks of me having both my children who were exactly two years apart and I breast fed, but I ate huge amounts of healthy foods and chips, and within 3 weeks I weighed 93lbs again.  I thought it was normal for me.  However I couldn't keep my breast milk in.  My whole life some mornings I would wake up feeling dizzy and drugged.  By the time I was 32 I also went to a sleep clinic exhausted.  I was diagnosed with anxiety.  I still after 13 years of trazadone and Paxil at times wake up with this deep fatigue. Over ten years ago my hair started falling out and it is down to maybe 1/3 the amount and I break out in weird rashes on the back of my head.  I have chronic folliculitis (which I have never felt it was folliculitis cuz it looks like acne and I treat it like acne and it goes down to minimal)  on top of weird acne.  I have been for years getting things treated individually.  I found out my sister who was always over weight is extremely skinny now.  She has never been skinny (I love her anyway) but I gained.  I think I may have some kind of thyroid or hormonal thing on top of hormonal woman stuff. .  My symptoms in all categories have gotten worse.  My point is you have made me think about all these years of me getting the wrong treatment because of lack of education. I went to the E.R. tonight and I have for weeks had a pain in my side like for inches long vertically.  I was out of there in 3 minutes.  Thank you for bringing something else to light.  I hope you fins your answers and feel better soon.


  • 0

Celiac.com Sponsor:

#17 daydreamer

 
daydreamer

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 12 April 2014 - 03:24 PM

Back in 2009, I started getting fatigued and exhausted very quickly despite my young age (only 22!) I would often fall asleep at the computer, fully dressed, and wake up a few hours later disoriented. Finally in August of 2012 I went and got a sleep study done. I was tested for narcolepsy and sleep apnea.

 

I was diagnosed with a disorder called "Idiopathic Central Nervous System Hypersomnia". It is, apparently, very similar to narcolepsy - except I don't have cataplexy and there was no REM sleep during my multiple naps. The sleep specialist prescribed me a drug called "Nuvigil" that is used to treat narcolepsy. I never took it, since it seemed like a very powerful drug, and it also was very expensive...even with insurance.

 

Nearly a year later, I was diagnosed with celiac disease. Since going gluten free, I would say that I am still exhausted a lot and tired all the time...but to a slightly lesser degree. I personally believe that the sleeping disorder is because of my celiac disease...but it's becoming more of a problem. I often drift off at work (I am an Administrative Assistant, so I do a lot of work at the computer) I asked my primary care physician about the connection between celiac disease and this sleeping disorder, and he brushed it off and told me there wasn't a connection. He said there is nothing he can do for me, apart from me taking the expensive, powerful Nuvigil. I really don't want to take it, but I also can't afford to be falling asleep at my job. I do my best to stay awake, but it's really difficult sometimes. I'm hoping that once my celiac disease is really under control, this sleeping disorder will be a thing of the past. 

 

Does anyone else have a similar experience with a sleeping disorder? What are your tips for staying awake? Will it get better? I really don't want to take this medicine if I can avoid it...

 

I stumbled on this feed while trying to link many of the things I've been told I have. 

 

All through high school and college I fell asleep through classes despite the amount of sleep I got, caffeine consumption, or exercise. I always preferred naps to going out. I can fall asleep anytime. I started falling asleep while driving 5years ago. I could be completely awake and fine then startled awake. It's Extremely scary not to mention unsafe! It was only then that any doctor believed I was more tired than I should be. duh

 

Eventually (3 years ago) I was diagnosed with Idiopathic Hypersomnia. I've done all of the rx's despite the ridiculous cost. They haven't helped enough to outweigh the added side effects none lasting more than 4hours of wakefulness. I just feel like a zombie that's propelled forward, but not anymore awake. 

 

While trying to find out what was causing this extreme fatigue and many other symptoms I was experiencing I was diagnosed with Hashimoto's Thyroiditis (3 years ago). This explains basically everything else I was feeling. My doctor said he didn't want to treat it until I had my sleep problem under control.

 

I did not want to be on medications that I could avoid, so I looked up all I could on both diagnosis  and tried to "fix" what I could. Going gluten free was one of the biggest suggestions I kept finding; however, with many family members having celiac. I was NOT about to do that. I love breads and pastas. I did literally everything else, but with no success. 

 

I was at this time training for triathlons (unsuccessfully I might add) I do them every year. I was having a lot of problems due to my thyroid problem, and sleep disorder.  Then of course I started gaining weight rapidly and a few more symptoms I hadn't encountered before. Yay. As an athlete I kept a food journal and I easily noticed that I consumed a lot of carbs. (this had never been a problem before, but perhaps my age is catching up with me I thought) I cut back on my breads and pastas, and felt much better a few week later. I had gained so much weight, and felt so crappy that I did not realize I was extremely bloated as well. I kept up a low carb diet for a few months before I realized other things like sauces and dressings etc. bothered me as well. I went completely gluten free and have been for 2 1/2 years. I've not been diagnosed with Celiac. I know without a doubt I have it. (Many 1st degree and 2nd degree family members have it, the doctor did the biopsy after I had been COMPLETELY gluten free for 9mo. I detected it early on because of my food journals, and knowledge I had already had of Celiac disease. )

 

Like you, I feel slightly less fatigued since going gluten free, but in no way normal.

 

As I look back, I realize that I had a lot of these symptoms long before I realized there was a problem with my health. With medications I only feel comfortable driving for 1hour or so. Sometimes a LOT less. 

 

All of these are linked, I'm sure of it. I haven't found it yet,I was so relieved to see someone who thought the same way. If I really have this much wrong with me then fine, but I am not convinced. 

 

I find that iron helps some. Keep us updated on what your lab results are, I am interested to see what helps you. Good luck!


  • 0

#18 Waitingindreams

 
Waitingindreams

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 323 posts
 

Posted 29 April 2014 - 07:11 AM

MickeyMudge - It seems as though you are no longer active on the forum, but in case you do come back to see this - I appreciate all of your input! That's really scary to have a dairy, wheat, AND yeast allergy. I would suggest trying a paleo diet - it is no grain, and no dairy. They sell paleo breads that are made from coconut/almond flours, though you'll have to check if they contain yeast. As for the soy sauce, they do have gluten free soy sauce out there. If you have a PF Changs near you, they have gluten free food with gluten free soy sauce...and apparently some brands make a gluten free version that you can buy in stores. (I know you said it isn't much of an issue as of yet, just wanted to throw that out there!) I think the paleo diet would be great for you. It's no grain, no dairy, and I don't think yeast is allowed either but I am not positive. 

 

As for being tested for allergies, I was tested right before I was diagnosed with celiac disease (so June 2013) and my arm swelled up from the prick test with the pollens/trees/grasses as I knew it would. I've always had severe seasonal allergies, but since going gluten free they have eased up a lot. He also told me I was allergic to peanuts (what? I just ate peanut butter before finding out my results, no kidding!) and I now carry an epi pen to be on the safe side. I plan on getting re-tested for the peanut allergy very soon, as I don't think I'm truly allergic. As for not breathing during the night, maybe I would suggest an air filter? Is there something else causing your allergies during the night - dust, pet dander, anything? I would look into that.

 

As for me, I don't think I have a parasite or anything close (though I was wondering if I had demodex mites that were causing my rosacea - so i asked my dermatologist to check  - no mites) I have actually found my energy levels have improved more after getting some blood work done and finding out I was deficient in folate and iron. I've also found that avoiding dairy (lactose) has been a huge help, as I am lactose intolerant. I think that was hindering my improvement tremendously, but I still fall asleep very quickly and often don't have a  lot of energy. I plan on getting re-tested for the sleeping disorder years down the line when I feel better/more energetic just to try to prove that I didn't need that medicine. :) Hope you are doing well!


  • 0

Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#19 Waitingindreams

 
Waitingindreams

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 323 posts
 

Posted 29 April 2014 - 07:14 AM

imahurtinunit: Wow, that is really scary. Have you been tested for celiac disease? I would recommend getting tested, and I would get bloodwork done as well to see if you are deficient in any vitamins/minerals or if you have another issue, like an overactive thyroid, possibly. I hope you start researching and looking into other causes for your ailments, don't give up! Hopefully you can come back and let us know your progress. I would definitely look into everything, something is going on unfortunately :( I hope you're feeling better.


  • 0

Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 


#20 Waitingindreams

 
Waitingindreams

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 323 posts
 

Posted 29 April 2014 - 07:20 AM

daydreamer: It really is a relief to find someone else that has been through a similar situation. And your comment has just confirmed for me that I made the right choice in not taking the medicine (though I was very close) 

 

With all of my skin issues and fatigue issues, I asked my doctor to do some bloodwork and it was found that I had an iron and folate deficiency. I started taking an otc iron supplement (Slow-FE) and a prescription strength folic acid. My skin improved slightly from the folic acid supplement, and my energy levels improved slightly as well from the iron...but having been put on iron pills years ago and developing a nasty fissure as a result - I am very cautious about using iron pills and I've decided that I only want to take them during my period. I think a huge cause of my issues comes from dairy, as I am lactose intolerant. I think it is preventing my weight loss, causing some of my skin issues, and making me feel fatigued. I am currently doing a dairy challenge in a blog on here (just started) so I am hoping to see great results from that. I also have an appointment with a naturopathic doctor later today, which is exciting. 

 

Could you potentially have issues with other food? Some people with celiac disease have corn intolerances, a lot are lactose intolerant or allergic to dairy, etc. Maybe there is something else you are missing. I'm glad going gluten-free has made you feel better! :) 


  • 0

Diagnosed via blood test: July 2013

Digestive Issues: Lactose Intolerance, Candidiasis, recurring hiatal hernia, possible SIBO

Skin Issues: Rosacea, Seborrheic Dermatitis, Tinea Versicolor

Sleeping Issues: Idiopathic Central Nervous System Hypersomnia, Sleep Paralysis

Allergies: Severe Seasonal allergies,histamine intolerance (under control) sulpha drugs, Oral Allergy Syndrome

Other: TMJ, Gallstones, Orthostatic Hypotension, Dysmennorhea, possible Adrenal Fatigue

Gluten Free - 07/13, Soy Free 05/14, Legume Free 05/14, Dairy Free 09/14, Grain Free 10/14

"I am in control of my own health" - working on crossing everything off this list.

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: