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Terrible Sleep!


Jetamio

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Jetamio Apprentice

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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BabsV Enthusiast

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!

Jetamio Apprentice

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!

  • 1 month later...
Mnicole1981 Enthusiast

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

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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