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newgfcali

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About newgfcali

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  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. I just had mine checked, and it was 15.7 (32-100). The dr ordered 50,000 IU three times a week for the next six months. That seems like a lot in comparison to some of you.

    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... :blink:


  5. But wheat glucose syrup is okay to eat. At least it is in Australia where I live.

    Wheat glucose syrup is so refined that there is no detectable trace of gluten left. It's like Dextrose (from wheat) and Caramel colour 150D (from wheat). They are the safe wheat exceptions.

    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). :blink: But now I know that wheat glucose syrup, dextrose and caramel color are all ok.

    Fresh breath can be mine again! :lol:


  6. Mentos??? Really?? Haven't eaten them in a long time but now that I think of it I remember they used to give me terrible gas and bloating.

    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


  7. 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. :)


  8. But last year my doc had me get tested for heavy metal poisoning, and I was high in mercury, lead, and off the charts in tungsten. And mercury or lead--I've forgotten which--can give MS-like symptoms.

    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?


  9. If it helps you guys at all, I had a big problem with peripheral neuropathy when I went gluten free. I actually developed the symptoms AFTER going gluten-free, and it lasted about nine months. Along with balance issues, vertigo, mild ataxia & cognitive issues. I couldn't feel it when I hurt my hands for nine months, and would drop things without noticing too. Had me totally freaked out. I did not have health insurance at the time, so did not get tested for anything, hoping it was just a gluten thing, and I was right, it all went away and hasn't come back for years. Well, I hope I was right!

    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.


  10. {snip}

    I am going to have an MRI next Friday, and they are testing me for neuropathy, as well as doing a whole bunch of blood tests for various things. This was actually my first appointment with a neurologist, so I don't really know all the ins and outs of it yet. I have had some symptoms like muscle weakness and eye problems. One of the problems I am have that is quite frustrating is vision/migraine problems - the visual disterbance has not gone completely away since January.

    How long have you guys been gluten free and are your issues resolving? Have you had neurological problem? I have been quite disappointed with my seemingly lack of recovery since going gluten free.

    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.


  11. My symptoms have not gotten much better after being gluten free for 5 going on 6 months now. The Doc thinks it's possible that I could have MS as well as Celiac. We'll just have to see. Mostly it's just hard because I'm trying to figure out how to get all these test done and get to all these appointment while feeling crappy and having an infant, 2 yr old and 4 yr old. All the while my husband is trying to finish up this last semester of school with a really needy wife on his hands. Yeah, I guess that's it in a nutshell. Sorry about the rambling.

    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.


  12. I know this is too late for your party, but I make a very simple pineapple upside-down cake with Gluten Free Pantry Cake and Cookie Mix. It's a bit denser than other white cake mixes but with the butter, brown sugar, and pineapple to moisten it, it's perfect for this.

    You can make it dairy free by using water (or pineapple juice from the can, which is what I do). :)

    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. B)


  13. Oh! Newgfcali, you are great! I didn't think you were bashing the whole company at all. I was just teasing a bit. :rolleyes: I'm sorry - I hope I didn't make you feel bad. I should have added some "ha ha's" and "lol's", because I was really just saying that in good humor. Besides, I want to hear what you all think about different products - it's really helpful.

    I really don't want to be a discouragement to anyone here - heaven knows we have all had enough of it to last a life time. (kicking myself :()

    I find I'm not a very good communicator.

    I hope you are having a good day. I just got home from the neurologist - so it's not such a great day for me.

    Let me know if you have any good baking advice to pass along. (Even the stuff that you didn't like or didn't work :))

    ~Sarah

    No... it didn't make me feel bad at all. That would be the accidental glutening I got yesterday that made me feel bad. :P

    Will continue with my science experiments as soon as I'm feeling brave again. :) :)

    Hope you're ok... bad report from the neuro?


  14. I was wondering if gluten can really damage the brain?

    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".


  15. 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. :rolleyes:


  16. 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.


  17. When your cupcakes runneth over, you must gently cut off the excess & eat it before frosting. Frosting will cover the fresh cut. This is one of the benefits of being the cook.

    LOL! Good tip.

    Sometimes if we overbeat things they turn out funny shaped or explode.

    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!)


  18. I highly recommend Bruce Fife's cookbook "Cooking with Coconut Flour."

    You mentioned you were dairy-free. Many recipes call for coconut milk. What about eggs? These recipes do use a lot of eggs. Some require butter but many others use coconut oil. Many recipes include low-sugar variations.

    I do not like to bake or cook, but almost all of these recipes are easy and well worth the minimal effort. Everything we've tried so far has tasted delicious. Sweet breads, muffins, cakes, pies, pancakes, etc., and even some main courses - the chicken & dumplings is an absolute favorite!

    Best wishes!

    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. :P


  19. 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!!!!


  20. I haven't tried any baking from scratch yet but the Glutin free pantry choc cake was good. I will cook it at least 3 less minutes next time as it was a touch dry. Put a good icing on it. Or cut it up & layer with fruit & whipped cream in a pretty bowl. Is that called a trifle? Layer cake with coffee ice cream. The Betty Crocker brownies are good - throw in choc chips or peppermints & ice real pretty.

    Good luck!

    All wonderful and yummy sounding! Unfortunately I'm dairy-free and one of my dinner mates is allergic (IgE type allergy - yipes!!!) to chocolate. The trifle idea is terrific... I'll file that away in my tiny mind until the day I can reintroduce dairy. It would be perfect for company -- very pretty.

    Maybe I'll just throw in the towel and buy some fresh pineapple and put a scoop of non-dairy coconut ice cream on top. That's what I did for Easter and it seemed to go over pretty well. But darn it!!! I want to bake something that tastes halfway decent!