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bny06

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by bny06

  1. bny06
    WOW... thanks - adalaide- that does sound promising, but still so strange, that i have tried it THREE times and gotten sick for a good 24 hours after each time.. i kept thinking maybe it was a conicedence.. maybe i had a stomach bug etc... haha.. i really like the taste of those cookies!!! It's my typical reaction though - (however I am a weird case.. not...
  2. bny06
    Thanks so much!!! I will do that.. you would think after eating them TWO times, I wouldn't try a third... but I had a weak moment and thought to myself, it says gluten free!!! maybe it was just a coincidence in the past!?! But just like the last two times horrible left upper quandrant pain and awful GI symptoms.. shakiness, felt steaming hot for a day...
  3. bny06
    I have been strictly gluten free for almost 2 years.... I was really really ill by the time they realized gluten was the problem.. . I was thrilled when I found one of my favorite pre-made cookie dough cookies are now in gluten free.. I have tried them THREE TIMES... (the chocolate chocolate chip ones).. and EVERY single time have a major GI flare hours later...
  4. bny06
    thanks so much for your reply!! When that was happening (the frequent urination) I defintely had Addisons disease etc on my mind.. but wasn't really lightheaded when standindg toooo much at that time - though that did follow.. the urinating frequently stopped about a week ago (about three weeks after stopping B6) now I don't have to urinate often. I did...
  5. bny06
    So I am new to all of this - 7 weeks or so gluten free after losing a ton of weight lots of GI issues etc.. When I went gluten free I started manifesting some wierd neuro sypmtoms and my dr thinks it was related to B6 toxicity now.. anyone else had this? There isn't a lot online that I can find. My neuro symptoms started when I went gluten free the same...
  6. bny06
    oh and i meant to say- after ingesting caisen (not knowing it at the time) I felt disoriented/drunk feeling as well.. for hours.. it was the strangest thing!
  7. bny06
    I'm new at all of this as well (7weeks gluten free)however I had weakness (all over, especially in hands though) with tingling/burning achy twitching waking me up especially at night as well AFTER i went gluten free.. a few weeks later I realized (after a bad GI flare up again with more weight loss and increased bowel movements) that I had an issue with Caisen...
  8. bny06
    I was reading this post and was curious if yall ever figured out what exactly was causing it? I have wierd neuropathy- but also muscle weakness all over- even if I laugh for a bit my facial muscles feel like they ran up the stairs really fast- just that fatigued feeling.. I have been gluten free for 7 weeks and though i was super weak all over for a few months...
  9. bny06

    ARCHIVED Is This Dh?

    bny06 replied to bny06's topic in Coping with Celiac Disease

    Thanks yall!! I couldn't describe them better myself- they are intensly itchy with a little burn! They have resolved now after I guess I got glutened last week - my GI symptoms flared and I became SUPER starving hungry a again for a few days (not a feeling I like at all)! but now all is calmed down thank goodness (except my neuro stuff, still waiting to...
  10. bny06

    ARCHIVED Is This Dh?

    bny06 posted a topic in Coping with Celiac Disease

    So I am still fairly new to all of this - gluten free for 7 weeks.. I recently realized I had a sensitivity to caisen as well, and had not only neuro symptoms flair, but also my GI symptoms (using the restroom 15 times a day again ugh) anyhow I also got blisters that itched on my fingers- only 3 or 4, but they were very noticable.. I realize I've had these...
  11. bny06
    I realized last week I had a bad reaction to caisen.. so i cut it out of my diet immediately (now 7 weeks gluten free). I however have been drinking these enlive drinks (like ensure but juice) to gain weight from all the weight I lost, and read something in my gluten free book that I should also avoid whey!! Opps! The drinks are mostly whey protein.. am...
  12. bny06
    This was happening to me over the past few weeks too!! I kept feeling as if someone slipped in some alcohol into my water or something I literally felt DRUNK!! I could'nt walk straight and the wierdest part was I wasn't even that concerned about it, since I felt drunk emotionally as well i guess.. It was followed by a pretty good headache so I wonder if it...
  13. bny06

    ARCHIVED Lyme Testing

    bny06 posted a topic in Coping with Celiac Disease

    Good evening all! For those of you that have done the lyme testing, how did yall go about it?? Did yall use that Ignex lab? and if so do you take the forms to your dr or a lab or who draws the blood ships it orders the tests etc?? From what I have been reading, it looks like that's the lab that should be performing the tests.. I don't want to have my dr...
  14. bny06
    Thank Yall SOO much.. I can't tell you how much yalls replies calm my nerves (the mental ones that is)! I have never been a patient person (with the fertility stuff we went through I had to learn patience, but this is a whole new level- when my neuro system isn't working correctly it truely is scarey)! It makes me feel so much better knowing that other...
  15. bny06
    Anyone else feel this way? I am 7 weeks or so gluten free, however I realized last week I had a major issue to caisen, and had been eating it for days... so my GI symptoms came back full force, and my muscle twitching got way worse as well, with some painful spasms.. well 2 or 3 days since I've touched caisen- the twitching is improved.. but I was walking...
  16. bny06
    Thank yall so much!!! I now see that I do need to avoid any processed foods for a while I guess... I had a horrible 3 days, and turns out not only the cookies but I was eating some chicken pattie things that were pre-made turns out they had gouda cheese in them!! I'm just happy I finally figured out why I was feeling bad again! Does anyone else twitch...
  17. bny06
    How long does that drunk feeling last for yall?? I ate some cookies last night before bed and one as a dessert for breakfast haha ( I used to eat gluten filled cookies first thing in the morning along with breakfast- guess it wasn't helping my situation out any huh?) I felt awful for a good 8 hours today- drunk, disoriented feeling and then a headache to...
  18. bny06
    My level just came back at 21... (the lab's normal low was 32) My dr said she was going to call in a Rx to take once a week ( i think it was 50,000) she said i'll be taking it once a week for a few months and then the dosage will decrease.. I hope your right - i hope it helps with the ataxia/neuro symptoms!!! What was your level?
  19. bny06
    SO sorry you have to go through this!!! I am 6 weeks out on gluten free diet.. but it took me 4 weeks for my bowel/belly stuff to feel better... I was still having up to 10 bowel movements a day, cramps etc for most of that first 4 weeks.. I was also avoiding dairy.. I realized the first week going gluten free when I was trying to eat calories by eating...
  20. bny06
    ok.. so I am about 6 weeks gluten free- had lots of weight loss/bowel abdominal issues the two months before diagnosis ... and then wierd neuro symptoms- peripheral neuropathy etc... Anyhow my bowel issues have resolved for the most part.. but I ate some gluten free choc chip cookies last night (from pamelas mix in the purple bag) and I had one this morning...
  21. bny06
    Hello everyone! So I am almost 6 weeks gluten free.. I think I'm being pretty strict.. haven't eaten out once! but i'm sure i'm still making mistakes... I was just curious if the healing process with myself is similar to yalls?? It took almost 4 weeks before my bowel habits (sorry tmi) have almost normalized (from what they used to be).. Initially when...
  22. bny06
    I havn'et had any wine since going gluten free the past 6 weeks... I am too afraid to feel bad the next day!!! Especially after reading this!! But, when going through a bunch of fertility treatments (when we'd get that negative pregnancy test), I found the organic wines (which I have only found 3 brands of them that are truely organic) AND if they are...
  23. bny06
    ravenwood: Thank you so much!!! Wow hearing your story helps me calm down for sure.. you say your emg had flatlines in it - when the neurologist read my emg (a physiatrist had performed it) he actually said " see look your almost flat lined " on three limbs.. it's just crazy that this can all happen so fast.. and be related to a thought to be only "gi" issue...
  24. bny06
    Thank you... haha.. yea it has defintely been a bit of a hailstorm around here.. we have kept saying - we can't wait till everything gets back to "normal" for a while, boy am I ready!!! I"ll take just not getting worse, and hhopefully a little better though! adab8ca how long did it take for the weakness in your hands to go away??? EVerytime i do anything...
  25. bny06
    Hello!! Actually you are probably correct!!! Years ago, (i had no idea I had any gluten/celiac issues) I was having fertility problems.. they found a huge endometrioma (endometriosis cyst) on ultrasound and then did surgery to remove it.. they said I had one of the worst cases of endometriosis they had ever seen.. however I had never had any pain or symptoms...
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