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Hells Bells

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Hells Bells Apprentice

I wonder if anyone has any idea whats going on, I have been getting pasty looking, fatigued and recently when I stand up quickly I get dizzy. I am cold all the time but fatigue is my biggest thing. I am gluten free apart from the odd accident. I thought cold was due to thyroid, but now not sure. My blood pressure seems lower than it usualy is 105/70 usualy I'm at about 130/75, I got so dizzy I thought I was going to faint.

So can anyone help this 42 paranoid celiac, convinced I must have cancer or leukaemia or something, thats why I don't want to go to my doc, they always say its all in my mind anyway.

Oh also having real trouble sleeping.

Thank you everyone


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jerseyangel Proficient

Have you been tested for anemia? I had all of your symptoms--and found out that my hemiglobin was at 8. Just 3 months before, it had been at 11.5.

I had all of the symptoms you describe.

flowergirl Rookie

Yes, I agree. Get your iron levels checked. It also sounds like your metabolism is too slow. I have the same problems you describe. Try taking extra virgin, cold pressed coconut oil and flaxseed oil regularly. I was surprized how the metabolism picks up and the cold feeling fades away. Try it, you'll be surprized.

missyf Newbie

I agree. I would have your Iron checked. I have been struggling with Anemia for about 8 years. I have had 4 children, all c-sections, and my level was 6 before my last one in 2005. I was put on Iron Pills, which irritate my stomach. I try to eat lots of greens and red meats when I feel tired or dizzy. It seems to help short term. I believe it is still best to know and check iron level. Good luck

I do, still, feel cold, dizzy, and tired frequently. I am not convinced that it is the Iron Deficiency. Mine is around 10.5 normally now. I think it has to be something else. I have had several expensive tests, exams, x-rays, MRI, c-scan of everything from my head to my bowels. Nothing has turned up, aside from the anemia, celiac, and IBS. If anyone has an idea, please let me know. Thanks

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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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