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Member Since 08 Apr 2014
Offline Last Active Jul 03 2014 11:52 PM

Posts I've Made

In Topic: Essential Tremor

12 April 2014 - 04:09 PM

I didn't know there was any relation between the essential tremors and celiac. Celiac runs in our family. My maternal grandmother has essential tremors badly (it exhausts her). She does not have celiac. My mother has celiac and does have shaky hands from time to time. I am self diagnosed with Celiac and have had hand tremors for years. (I'm only 27)  This is very interesting, thank you for inquiring. 

In Topic: Sleeping Disorders Linked To Celiac Disease?

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!

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