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newgfcali

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About Me

Dealing with ongoing GI and other issues for years and just chalking them up to "getting older". Looking back now, I wonder how I could have missed all the warning signs. Oh, well.

Hypoglycemic and anemic since I can't remember when

Abdominal surgery 2003, surgeon says abdomen "full of adhesions"

Dx arthritis 2004, Dx osteopenia 2005

Gall bladder attacks 2005-08

Lactose-free 2006

Dx peripheral neuropathy 2008

Internet research on neuropathy finds connection to gluten intolerance Oct 2009 (ah HA moment!)

Gluten-free Oct 2009

Enterolab confirmation gluten & casein sensitive Feb 2010, further testing finds soy & yeast sensitive Mar 2010

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

Dx small fiber painful neuropathy 2010

Dx microscopic colitis 2010 (the same week as sfn dx - great week!)

Currently red meat free, gluten-free, casein-free, soy-free

  1. newgfcali
    It's been nearly two years since I posted this question, and I'm here to say "YES"! As everyone predicted, the neuropathy started to get better after about 6 months or so. I still have residual numbness here and there, mostly toes and tips of fingers and strangely the outside of my knees (go figure), but the stabbing pains in my feet have stopped and I can...
  2. newgfcali
    Yep, I have gluten intolerance and had it under control with diet for many months. Then I started having symptoms again and my gastro found that I also had microscopic colitis. Went on a regimen of Asacol for one month and that cleared it up. No recurrences since then, and it's been nearly a year. However, mc means no more NSAID's or aspirin products EVER...
  3. newgfcali
    OK, so here's the deal. About 8 months ago I found an association between peripheral neuropathy, the bane of my existence, and gluten sensitivity. I cut out gluten for 4 months, then found Enterolabs. Did the test and, even though I'd been gluten-free for 4 months at the time, it came back positive for gluten sensitivity with a double DQ1. The tTG and...
  4. newgfcali
    Trillum - I had mine checked and it was 18. My doc put me on 50,000 IU once a week for 8 weeks, then 2000 iu/day for a few months, which is what I'm doing right now. Haven't rechecked levels yet. 50,000 three times a week sounds extraordinarily high...
  5. newgfcali
    Wiki had this rather interesting list, the amount of gluten (in parts per million) left at various stages of processing: Wheat Flour (80,000ppm) > Wheat Starch (200ppm) > Dextrin > Maltodextrin > Glucose Syrup (<5ppm) > Dextrose > Caramel Color So since wheat glucose syrup is less than 5 ppm, it's considered "gluten-free", even...
  6. newgfcali
    You're too funny! Yep, huge snoozer here, too. For me it only lasts a couple of days, but it's a MAJOR nap attack. I think one time I slept about 20 hours out of 24.
  7. newgfcali
    I don't have one in front of me, but I read the ingredients on a roll of the regular mints and "wheat" was staring me in the face. Here's a list of ingredients I found online for "Mint Mentos": sugar, wheat glucose syrup, hydrogenated coconut oil, rice starch, gum arabic, sucrose esters of fatty acides, gellan gum, natural flavors
  8. newgfcali
    Just carrying it one step further (although I think we've pretty much beat this one to death), what if you did go ahead with the complaint? Then follows the ugly meetings, hearings, or however your company would proceed. Bad feelings ensue all around, your boss and your company resent being pulled into a nasty fight, you resent their attitude, etc. etc. etc...
  9. newgfcali
    Would you believe MENTOS? Yipes. Just when you thought it was safe to freshen your breath... wham-o!
  10. newgfcali
    Nor_TX~ Not to tell you what to do, but to suggest something here... In looking at this list, the only thing that's a "whole food" is the shrimp. Many of us have found that it's better to eat completely whole, unprocessed foods at first until we get things under control. For this meal, it could have been shrimp, some steamed veggies, and plain white or...
  11. newgfcali
    Isn't it amazing that we can go from talking about pineapple upside down cake to heavy metal toxicity? I love this forum. I learn so much!
  12. newgfcali
    A quote from the Quest Diagnostics website: "Peripheral neuropathy may also be caused by several heavy metals. Lead toxicity is associated with motor neuropathy, whereas arsenic and mercury cause sensory neuropathy. The 24-hour urine heavy metal test is the most useful test for diagnosis of heavy metal toxicity." Since MS can present with both motor...
  13. newgfcali
    Wiki has some very detailed info on each of these conditions: Open Original Shared Link Open Original Shared Link There is good evidence linking gluten sensitivity/Celiac with both neuropathy and ataxia. Dr. Marios Hadjivassiliou has written a bunch of papers on the subject: Open Original Shared Link
  14. newgfcali
    That's the first I've heard of anyone developing PN after going gluten free. I'm very glad to hear you no longer have any of these issues.
  15. newgfcali
    The combo of vision, migraine and weakness does sound like it could be MS, but these symptoms can also be attributed to many other things. Sound like your neuro is determined to get to the bottom of it, which is good. I'm going on 6 months gluten-free also. I stopped gluten when I found a link between it and neuropathy. A few months into being gluten...
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