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Everything posted by newgfcali

  1. 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 feel most of my feet and legs now. I live a VERY strict gluten-free life now and am so thankful for everyone's help here on the forums figuring this out.
  2. 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 again. So if you're in pain, Tylenol is your only option.
  3. 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 malabsorbtion were negative. While I was off gluten my D mostly resolved, although the neuropathy didn't improve perceptively. Fast forward 2 months. D returned big time. Felt horrible again. Threw up my hands in disgust and saw GI doctor. He ran battery of tests including colonoscopy with biopsy for microscopic colitis. Yep - it's positive. So he put me on Asacol. But here's the tricky part. He doesn't believe the positive lab from Enterolab and wants me to do a gluten challenge and take anti-gliadin IGG and IGA blood test. The challenge is ongoing with the Asacol now. My question: will the Asacol mess up the gluten test? Has anyone had any experience with this? I don't want to be wasting my time on the challenge if it's going to be compromised by the drug. The good news is the Asacol seems to be getting the D under control again. Yay!
  4. 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. 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 in Australia, a country that requires a product to be less than 5ppm to be labeled "gluten-free". OK. I panicked. Any time I see that word "wheat" in a list of ingredients, I run the other way (unless the word "buck" is in front of it). But now I know that wheat glucose syrup, dextrose and caramel color are all ok. Fresh breath can be mine again!
  6. 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. 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. 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. After the dust settles, what have you won? Maybe they'll provide lunch for you, maybe they stop providing lunch for everyone. Regardless of the outcome, there's ill will on both sides, and really nobody wins. You may win the battle, but at what cost? Some gluten-free food for thought.
  9. Would you believe MENTOS? Yipes. Just when you thought it was safe to freshen your breath... wham-o!
  10. 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 brown rice. I know it's sounds REALLY boring, but by depending on Lays, Glutino, Hormel and Blue Diamond to be completely contaminate-free in all of their processing is kinda like playing Russian roulette with your health. Better at this point to keep it simple, clean, and totally gluten-free. You won't have to eat like this forever -- just until you feel better for say... a week or two. Then add one thing at a time, testing each food item individually to see whether you can tolerate it. If you still feel good after 4-5 days of the new item, then add another. It's called an elimination diet, and it does work.
  11. 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. 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 and sensory dysfunction, the combination of lead and mercury would give you both symptoms. How did you get so much heavy metal in your system? Are you getting treated to remove the toxins from your body?
  13. Wiki has some very detailed info on each of these conditions: Peripheral neuropathy Ataxia 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: Links to papers by Dr. H
  14. 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. 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-free I did the enterolab tests and found that I was sensitive to gluten, yeast, soy and casein, which are now all gone from my diet. As far as my GI problems go, they are mostly improving, although I go up and down with random glutenings (at least I think that's why I'm getting sick). But the nerve problems continue, and have actually gotten worse, which is why I have my first appointment with a neurologist coming up. I'm hoping he can give me a definitive answer as to what's causing it. I actually found one that specializes in peripheral neuropathy, so here's hoping. Good luck with your tests next week. I hope they find an answer.
  16. 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 can cause reactions in gluten-sensitive people. What makes your neuro think it might be MS? Have you had an MRI yet? Do you have neuropathy, tremors, eye problems, weakness in hands and feet? Even if it is MS, there are new treatments that are quite effective. My step-daughter has it and is back working full time, thanks to her meds. Keep us posted. Hope you're feeling better soon.
  17. 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. 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. 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: http://neurotalk.psychcentral.com/thread1872.html Look under the heading "Neurologic Manifestations".
  20. 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 if I came down hard on the whole company... not my intent.
  21. 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 further about gluten lurking in dishes, pots and pans, cooking utensils, on countertops, and I think they understood. They weren't offended at all. I brought some gluten-free cupcakes (that's another story -- go see the thread "Completely Disappointed") to share with everyone and most of them said they were good. I also brought a store-bought normal dessert in case they didn't like the cupcakes. If they're good friends (or family members), they should understand your needs. If they don't understand, try the analogy that for you gluten is like peanuts or shellfish to someone allergic to those foods. The tiniest bit can send them to the ER. Most people understand that sort of allergy. Stick to your guns. You're doing the right thing by protecting your health first and worrying about others feelings second.
  22. 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. 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 Earth Balance everything-free butter substitute. There's one that's even soy-free (red label) that's outstanding. OK, reporting back on the cupcakes. They came out pretty good, but I may have overfilled the papers, because they kind of exploded. They look like mutants, bulging out to one side. But they taste fine. Made some frosting from powdered sugar, the Earth Balance "butter", a little almond milk and 1/2 teaspoon of orange extract. Colored it with red & yellow food coloring to make orange. Presto! Suitable for Halloween. So disaster averted. On to the party. Of course I'm bringing my own dinner.
  24. 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. 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, dairy-free, chocolate-free and GARBANZO-FREE!!! What more could a girl want? Besides, I love the way she writes, so how could her cupcakes be anything other than wonderful? I did check the Bob's mix and it doesn't smell like it's rancid. Just yucky. (I noticed the goddess calls the taste "tinny", which definitely fits.) I'm going to print out this thread so I can hang on to the recipes, Wenmin, and the book suggestions, AlysounRI, and your link, sa1937. I don't know when I'll be able to have dairy again, but there WILL be a day. I'm determined! And missy'smom... cool idea on the individual upside down cakes. Never thought of that. Do you use pineapple chunks? Mskedi... I'm curious... why did the betty crocker cake not work? That was going to be my next move. Did it get soggy? Again, thank you all. I'll report back on the cupcakes. Egads! Is that the time? Must go BAKE!!!!
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