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Dealing With Fatigue And Lack Of Stamina


jymles

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kabowman Explorer

I take multi vitamins (don't care for the liquid), plus 500 C, 1000 calcium, and the B vitamin-complex/complete.

Blood sugar is a problem but I keep that pretty controlled because of a yeast intolerance too which elimates almost everything sweet and I eat protein with most carbs for balance. Discussed with dietition.

I have been gluten-free since July 2004, soy, peanut, and corn free since August 2004, almond and garbonzo bean free since September 2004, yeast free since October 2004, and lactose/casein and MSG free for more than 5 years

My thyroid has been checked within the last 6 months. My iron, last we checked about 6 months ago was OK too...and the doc said I don't have all the points for (sp) fibremyalga.

I have NOT been formerly dx with celiac disease. I was gluten-free for several months before my doc checked and by then (not before) I knew there was a danger of no visible signs for a positive ID and I told the docs that I REFUSED to go back in order for a positive ID and no definitive signs of damage were found.

-Kate


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mela14 Enthusiast

Hi Kate,

Boy you sound a lot like me with all the intolerances. How do you do it? I am still having a hard time and often find myself eating something I think is safe and then reacting to it. Vitamins are a little problematic for me as they irritate the heck out of my gut. I just started cutting my vitamins in quarters. Let's see how that works for me. All my blood tests were good....not showing any vit deficiencies.

I am going to columbia presbyterian tomorrow for a consult ....just in case someone is missing something. I know I will NOT go back on gluten for an endoscopy so let's see what they have to say about that. I thought I was doing a good job watching the gluten but test results yesterday showed a number of 35.....still high but at least nowhere near 66 from 4 months ago.

My dr also ran other tests and of course soooooo many more intolerances...ones that I have been reacting to. What do you eat? I am having a hard time with variety and often find myself craving something sweet. I have given into raisins, and some fruits and apple sauce but now...the Candida is in flare! back on a round of Nystatin to help me along. With my immune deficiencies it is hard to keep things in check.

OH WELL................more chicken tonght for dinner!

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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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