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Idiopathic Hypersomnia?
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hi there!

long time since i posted (and if i'm not at work, i don't care a bit about capitalization so i apologize) - any other celiac been diagnosed with idiopathic hypersomnia (IH)?

3.5 years ago, i was diagnosed with celiac, 1.5 years ago they added microscopic colitis to the list of my problems, then after being on entocort for the colitis (no idea if it's related) i started falling asleep... at work, in meetings, while driving. i also sleep for 16-18 hours on days where i don't have to work (and make sure to get 8 hrs on week nights - with some napping if i can swing it). two sleep studies and an MLST later, narcolepsy was ruled out (thus, my insurance will only pay for generic stimulants like adderall)... this is getting absurd. no dose of adderall/focalin will keep me awake anymore. they never really did, but kept me from falling asleep at the wheel or at work.

my new sleep doc (got a second opinion after my original sleep doc decided to try me on extremely high doses of focalin, saying there was nothing else he could do) had me try samples of nuvigil. it helps a LOT (i can't afford the cost without insurance, so i'm hoping a cheaper generic provigil comes onto the market soon)... but only for about 6-7 hours. i feel sane again during those hours - intelligent, awake (but not cracked out) and back to being my articulate self. but then i crash (in today's case, while driving) and when i do crash, i become this dizzy, inarticulate, almost drunk person.

i was diagnosed with RLS, periodic limb movement disorder and REM sleep behavior disorder during the sleep studies. i have since gotten off any meds outside of those absolutely necessary (apriso for colitis, horizant for RLS, stimulants for daytime, triazolam for night)... still on a completely gluten-free diet.

anyone else have a similar diagnosis? i'm 31, female, never had a baby, work 6:30am-4:30pm, exercise regularly, have a healthy diet and take care of myself. worth noting that when i had celiac, i hit about 110lbs (i'm 5'10") then leveled out at 125lbs. since the IH (and stimulants) i'm at 140lbs. had a "bod pod" yesterday indicating that i'm about 31% body fat and was told to try to reduce my caloric intake to 1500 cals/day since i already work out 4-6 times a week (strength training, running, dance).

seems like when i eat, it sits in my gut for hours... i have been trying to build up strength and cardio endurance, but my muscles don't seem to want to cooperate.

frustrated and tired of dragging myself through the day so i can afford to take care of my basic needs...

Jen

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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