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Terrible Sleep!
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Hi everyone. I have been gluten free for 2 1/2 weeks now; casein free for much longer. I had a positive blood test but have not had a biopsy yet. I'm meeting with an allergist to do some more blood work and I have an appointment with a GI but I don't know if I will gluten up for the biopsy or not yet. Anyway...

Since going gluten free, I feel better in so many ways. But my sleep has been terrible the last couple of weeks. I wake up constantly, can't get comfortable, too warm, then too cold. Last night I had these cold sweats - not physically sweating, just feeling like waves of cold chill/sweats were washing over me. Being chilled but sort of too warm head to foot. Hard to explain. Today I feel terrible! I feel like I'm walking in quicksand and I just want to sleep. My stomach is upset too. I just turned 36 and not perimenopause yet though I've had night sweats occasionally since I was 16 during my monthly from time to time. My doctor said some women do around that time of the month but all my levels are fine.

I am taking a good vitamin and iron (anemia) and just prior to going gluten free I was on 3000 mg of antibiotics a day for a really bad infection so I am on probiotics now. I've been on them for about a week. I feel like my sleep is even worse since starting the probiotics.

I went over everything I ate yesterday and no hidden gluten or casein. Could this be part of my body healing? Or something to do with the good bacteria rebalancing things? I guess it could be another food allergy as well. I suspect I may be sensitive to soy. Any feedback is greatly appreciated!

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Maybe gluten withdrawal? I know I felt much worse those first few weeks when I went off gluten...for me it cleared up a couple of weeks after it started. You could try melatonin (it helped me for a while but now doesn't really do anything for me!) Just make sure it is gluten-free!

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You could be very right about the withdrawal. I'm beginning to suspect cold "sweats" from earlier are related to a virus. I'm feeling worse and worse as the day goes on - I may have picked up the stomach virus that is in our office. I would love to some good sleep though!

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This is part of my symptoms. I have chills when I fall asleep, then I wake up drenched in sweat.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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