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newgfcali

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Everything posted by newgfcali

  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...
  16. newgfcali
    Well, that's a lot to handle. But you're not "needy" -- you're sick. "Needy" implies spoiled and whiney, whereas you have a VERY good excuse for needing help. So go easy on yourself. Is it possible you have other food intolerances that are causing you to feel crummy? Have you tried cutting out soy, dairy, eggs, legumes, nightshades? Any and all of these...
  17. newgfcali
    Thanks, Patti. Do you know if it has soy in it? I'm finding many of the premade mixes have either casein or soy in them, so they're on my no-no list right now. Hopefully in a few months I can start adding back a few things. In the meantime, I'm saving all of these great tips for the brighter future.
  18. newgfcali
    No... it didn't make me feel bad at all. That would be the accidental glutening I got yesterday that made me feel bad. Will continue with my science experiments as soon as I'm feeling brave again. :) Hope you're ok... bad report from the neuro?
  19. newgfcali
    Oh, yeah. Lots and lots of connections between gluten and brain/central nervous system/peripheral nervous system problems. Here's a link to another forum about neuro topics that talks about the link between gluten and neuro issues: Open Original Shared Link Look under the heading "Neurologic Manifestations".
  20. newgfcali
    Didn't mean to Bash Bob -- he's my go-to guy for most things. I can eat his gluten-free oats, and use his baking soda and many other products. It's just the baking mix I didn't particularly care for. BUT... I will continue to buy his other products. It's so hard to find a completely gluten free company, so I want to support his as much as I can. Sorry...
  21. newgfcali
    I just had dinner at a friend's house last night. They know about my "issues" and had offered to cook a whole meal gluten-free. I explained that it wasn't just gluten, but soy, casein, nightshades and yeast as well, and that I would just bring my own dinner so they could serve whatever they wished and not worry about my diet. When I was there, I explained...
  22. newgfcali
    LOL! Good tip. Well, that makes perfect sense. I never know when to stop beating. The batter was so gooey and sticky that when I was putting it in the muffin cups I had a tough time getting it to let go of the spoon! It's all a learning experience. Thanks everyone! I'll do better next time. (And next time no whining!)
  23. newgfcali
    Thanks, opus. I'll look up that book on (the a-word big online book seller). Eggs are borderline for me, but I still use them sometimes. In my allergy-free cookbooks I go ahead and use the ground flaxseed & water combo instead, but where a recipe calls for eggs, I use eggs. At this point I don't want to stray from any recipe ingredient. Yet. I use...
  24. newgfcali
    I was going to say the same thing as brendygirl. You gotta watch that soy. It can sneak up on you. Of all the things I'm intolerant to, soy is by far my worst. Who knew?
  25. newgfcali
    Thanks, all! I knew I could come here and get some help (and sympathy, which I sorely needed). I have to confess that I panicked and ran to the store to get a backup dessert. But now, with a backup solidly in the "bag", I'll try again. I think I'll try your suggestion, Sarah, and go with the glutenfreegoddess' vanilla cupcakes. They're gluten-free...
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