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Moccajoe

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  1. It’s hard to accept ‘dinner dates’ at someone’s house. I usually reply, with a laugh, ‘ I’m a terrible diner date! I have a crazy food issue thing, BUT perhaps we can get together for a drink or something? I make a great veggie tray!’ … I find this helps, not giving too much info, but not declining either. I’m quite private and would eat gluten if I had t...
  2. Since my last post I’ve learned a few things. Sadly I see that doctors have little interest in Celiac, as per my experiences. But doctors do have a financial gain/interest in ‘gastric bypass surgery and such.’ I’ve been reading lots, and it seems like both are very much the same, malabsorption. I spent too much money on supplements, and take quite a few in addition to B-12 shots. Still, my urine is orange, and smells like vitamins. I decided to try bariatric supplements/chews/ and sublingual. I’m no longer having ‘fruity pebble’s pee.’  Has anyone else experimented with this? 

    1. notme

      notme

      i took supplements when i was first diagnosed.  they never agreed with me and *yes* who needs the rainbow pee, lolz

      once i healed up some, my vitamin levels came back up to normal just from normal gluten-free diet, i figure it was because my healing gut was now absorbing the vitamins/minerals like it is supposed to.

      also, yes, doctors have very little interest in a celiac diagnosis - they can't make $$ on you if you're not sick anymore!!

  3. So, how often do you inject b12 shots? Do you take sublingual b12 in addition? How often?… (my MD is not useful.)Once you are feeling better, how much B1 do you take? As I’m feeling better, I’m not sure what I need to continue and how much. 

  4. Unusually sore 

    I’ve been eating really good, b-12 shot once a week and lots of vitamins. It’s been about 3 months since I felt ‘really bad’, but this past week I hurt everywhere. / joints, muscles and back pain. I know I’ve been more active lately since I’ve been feeling better, but I’m no used to this long rebound. Why is that!?

  5. 😔 I’ve been reading sooo much about celiac. Thank you ‘kitty kitty,’ as I really enjoy the links to published articles. But dang, I’m 49yr old, and I would say I’m quite ‘healthy’ all in all. But looking back over the years I’m so disappointed that my doctors failed to explore reasons for my ‘conditions’. I should not have had a dx of early osteopor...
  6. I heard that we shouldn’t take B complex vitamins. But plain B12. Why is that?
  7. Does anyone have any info on these supplements? They seem to have a Big Bang for the buck. They seem to be full of lots of good things.
  8. Hi. It’s 1000mcg of B12. IM shot. .. I’m 49, and from Canada. I was born with congenital hip dysphasia. And was never expected to walk. One doctor apparently took interest in me and actually looked at the chart. He told my mother that due to the excessive unprotected X-rays he experienced ‘way too many’ , ovarian damage and probably wouldn’t have kids (Fr...
  9. Hi I must say that I am not impressed that my doctor’s nurse called to discuss my blood work. He ordered 1000mg shot twice a week for two weeks, then 1000mg IM monthly. No other advice other than take a ‘gummy B vitamin, nor recommended a follow up apt. The Thiamine def seems to help, so I plan to increase it gradually. I feel like I’m in this alone. Woul...
  10. I must say I want to cry! I’ve taken 300mg so far and I can’t believe that I actually feel a bit better than I did this morning! Does the Thiamine work on bringing down the B12 levels from my lab result, or is that just stored in the liver, which is why you suggest taking the B supplement? Does the Thiamine need ‘fresh’ B12 to work best? -I just want to...
  11. This sure does help! I never thought of Thiamine. The articles are good and it makes sense. I picked up some B1 this morning. How long do you think I will start to feel better if I take 600mg a day? Will this bring the B12 down quickly? I feel so bad I had to rest after holding my arms up just to wash my hair.
  12. Hi Cristina. The 213-816 is the normal range. Mine came back as 1264. Since my last doctor visit, he recommended prenatal and B-12 supplements. I went to the doctor because I’ve been so very weak, fatigued, short of breath, slight poor memory, tingling in my toe and fingers, tachycardia. I eat very well, more on the line of a modified Paleo. And had been e...
  13. My blood test indicated that my B-12 was 1268. Does that mean my levels are high because my body is not absorbing B-12? I’m confused, I thought low B-12 was common in Celiac. What should I expect next? High numbers could be caused by different medical conditions. Should I expect future work up or expect B-12 injections with a repeat blood test down the r...
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