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marcel g

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by marcel g

  1. marcel g
    Update: I’ve retried @knitty kitty’s technique of 1500mg/day of thiamine for 3 days, but it didn’t significantly change my fatigue level. Weirdly, I did feel like I had a bit more physical energy, but I was still fatigued. Still missed work and needed a lot of naps. Tingling and twitching didn’t change, as well as the lightheadedness. I also go...
  2. marcel g
    My anxiety has been a lot better since starting an ssri, getting a better therapist, and getting better sleep, as well as removing gluten, and removing all news and Twitter. I feel like an ostrich with my head in the sand, but I can’t really cope with a lot right now and it helps a lot. The brain fog and irritability in particular seems better without gluten. ...
  3. marcel g
    I’ve retried your technique of 1500mg/day for 3 days, but it didn’t significantly change my fatigue level. Weirdly, I did feel like I had a bit more physical energy, but I was still fatigued. Still missed work and needed a lot of naps. Tingling and twitching didn’t change, as well as the lightheadedness. I also got my latest blood tests back, calcium and m...
  4. marcel g
    Thanks Posterboy, although I don't know if I have thyroid problems or if my fatigue is coming from somewhere else. My TSH and T4 levels have been normal, but the doctors I've been seeing haven't seen the need to test my T3 levels. They could be low, but it would be a very rare thing, so I'm going to keep looking elsewhere for the time being. I don't know...
  5. marcel g
    If my genetic test says I don't carry the genes for Celiac Disease, and I'm pretty sure that I'm sensitive to gluten, can I assume that I don't have Celiac Disease and have Non-Celiac-Gluten-Sensitivity? My recent test results came back negative for the Celiac genes, but did detect tranglutinimase at 0.5. I told the Dr not to bother with the standard Celiac...
  6. marcel g
    UPDATE: It turns out I don't carry the genes for celiac disease. I had it tested when I was in Canada last month. They also did the standard Celiac test, which I knew wouldn't turn up any thing because I'd been mostly gluten free for 2 years and fully gluten free for 3-4 months. The doctor insisted that antibodies don't disappear over time, and I just wanted...
  7. marcel g
    Thanks Posterboy. Yes, it's a lot of info. My C-reactive protein levels were normal I believe. Virtually everything is normal. I take cal-mag in the morning and magnesium-glycinate in the evening. I had my homo-cysteine a couple of months ago and it was in normal ranges too. I just had the genetic test done and I don't carry the genes for Celiac...
  8. marcel g
    My understanding is that neurological symptoms are common with celiac and non-celiac-gluten-sensitivity. I have tingling and pins and needles, as well as muscle twitching. Mostly in my arms and legs. I also have days where I feel like I've been glutened (I live in Asia, so restaurant food + soy sauce is hard to avoid.) and then I feel extra tired...
  9. marcel g
    Hi, apologies in advance if this has been asked before: I went out for sushi with my wife on Saturday, and I accidentally dipped one piece into the soy sauce and ate it, due to old habits. As well, I put a piece of cake in my mouth thinking it was egg omelet. I spit it out (my wife was horrified) but I think I did ingest some of it. On Sunday morning...
  10. marcel g
    Update: my tissue transglutaminase ab, iga results came back as “not detected” this was expected, since I didn’t get the full celiac panel done, and I didn’t eat much gluten for 18 months before taking the test. other results and changes: - my EBV igg came back at 639, where >22 is a positive. EBV iga was negative, meaning I didn’...
  11. marcel g
    Also interesting. I also used to get night sweats. Sometimes I’d have to change my clothes and put a towel down to get back to sleep. I can’t remember when they stopped, if it coincided with going to a low gluten diet.
  12. marcel g
    Interesting. I’ve been trying high dose thiamine for the last couple of weeks. 1200mg right now. My energy levels improved a lot fairly quickly, but the tinnitus has been pretty constant. the tingling and pins and needles has also improved, but that’s more subtle and harder to quantify. I got some kind of virus last week with a sore throat and headache, an...
  13. marcel g
    Thanks for the reference. It's a helpful list. My wife is at least gluten intolerant, if not NCGS or celiac, and we have one child with anxiety and ADHD and another with frequent mouth ulcers who has also become much more moody and irritable lately, so it's probably a good idea to get them tested.
  14. marcel g
    Update: I accidentally/carelessly glutened myself a couple of days ago. (ate sausages I bought before I went 100% gluten free a few weeks ago, forgot to check the package before eating them.) Result: my symptoms were minor: some pain and discomfort in my abdomen, the pins and needles had increased the next morning, and the next afternoon I became really...
  15. marcel g
    I've had tinnitus for as long as I can remember, and always assumed it was because of going to rock concerts and clubs in my misspent youth. However, my fatigue got worse recently and I started having peripheral neuropathy symptoms, and my tinnitus also got worse at the same time. My ears always clog up in airplanes and I have to forcibly equalize...
  16. marcel g
    Thanks sooo much Scott, that was really helpful. I'm hoping that I can eventually get a diagnosis for celiac, because then I can be done with the years of wondering about what chronic debilitating and incurable disease I have. 1) really good to know that ESR and CRP tests don't necessarily rule out celiac or other autoimmune diseases. 2) What...
  17. marcel g
    Yes, I was already taking magnesium bisglycinate before bed every day, it helps me sleep. Can't remember when I started taking it though, but I'm pretty sure it predated the pins and needles and twitching. I recently started taking a cal-mag citrate in the morning too, just in case. My first recovery period (in 2020) I was taking a 50+ multi, magnesium, l...
  18. marcel g
    Hi everyone, My main symptoms right now are fatigue, and tingling/pins and needles throughout my body, especially legs, hands, and face, and muscle twitching, mostly in my calves. No muscle pain, weakness, lack of coordination, eye problems, or significant orthostatic intolerance. As I wait for my gluten antibody tests to come back, which I'm...
  19. marcel g
    based on this I've just purchased some thiamine tablets, although I still haven't checked with my doctor. I have had no difficulty with getting up from a squat since the fatigue really started, but I've been doing squats and lunges and played a lot of hockey up then, so my legs were fairly strong to begin with. I'm going to start with 300mg / day and...
  20. marcel g
    Can it be a mild form of anemia if my blood tests for iron and ferritin and red blood cell counts have all been normal?
  21. marcel g
    Oh yeah, I'll keep you posted. I might start another thread since I have a bunch more questions. My original quesiton here was how long does it take for someone in their 50s for their intestine to heal after stopping gluten, and for the fatigue and tingling/ peripheral neuropathy to go away?
  22. marcel g
    Thanks @Wheatwacked, do you think would it be worth it to stop taking my B supplements for a few days and then retake the B12 and homocysteine tests? Would my vitamin levels drop to my baseline in a few days, making the results more accurate to my situation? Or are the B vitamins stored for longer than that?
  23. marcel g
    Thanks @knitty kitty - That makes sense. I checked my multivitamin (Centrum 50+, which I started around December) and it has 4000% DRV of B12, but only ~120% of the other B vitamins. The second one I only started a few days ago, only after I took the test, and it also has 100mcg of B12, but it has ~300% of DRV of the others, so maybe this second one will...
  24. marcel g
    Thanks @Wheatwacked - they checked my Hydroxy Vitamin D about 20 months ago during the first period when my symptoms really showed up. It was at 79 nmol/L, where sufficiency is listed at 75-250 nmol/L. (this was in Canada) I have been taking an extra D3 tablet regularly the whole time, on top of what's in the multi-vitamin, but I suppose it could've dropped...
  25. marcel g
    Hi, I have a very similar question to the OP. I've been struggling with a fatigue issue for a couple of years, (and maybe even before that) How long does it take for the fatigue to go away after stopping gluten? Context: My fatigue and other symptoms were pretty bad in 2020, and I had diarrhea, weight loss, brain fog, anxiety, dizziness and...
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