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 diagnosed by blood or endoscopy, as I was gluten free for a bit before tested.... i was really sick and loosing TONS of weight... gluten free diet helped me so much.. and the IVIG fixed the problem.. unless I have an occassional flare).. I get that left upper quandrant pain that lasts for a good 2-3 days and everything I eat goes right through me for a good 24 hours.. I loose a bit of weight each time.. .. if it's not gluten in them, i wonder what it could be!????

dilettanstesteph- Yup, sorry, it is left upper quadrant.... and it's like I can't put any solids in my stomach for several days without bad pain.. its just right under my left lower ribs.. when I first got sick and was loosing weight, i started calorie loading, thinking I need to eat more... i ate more and more (TONS of gluten.. lots of fatty cookies I thought would help my situation).. I felt like i was starving to death, but eating more than a linebacker! i had horrible constant pain there for several months, when i stopped eating gluten it slowly went away and eventually resolved.. until i get flares..

thank yall so very much for your help!!!

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 or two.., couldn't eat for over a day anythign solid without pain, lower gi symptoms and horrible nausea..etc... I never eat out at all.. and rarely eat anything processed.. but man, I would love to indulge every once in a while!!! Do you get LUQ pain with gluten?? is that common do you know?? Thansk so much for your help!

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, that lasts for a good day at least... Are these really gluten free? Are they made in a factory that is contaminating them? Anyone else have any problems?

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 have to go to the ER once during all of this mess since I was so dehydrated/lightheaded and my heart rate woudln't go below 130 even while just sleeping/laying there!! Ended up getting admitted into the hospital for dehydration/malnutrition a week later from my dr's office. I wonder if I could have had an issue then but it has resolved itself... or if it was all malnutrition related.

But it's still a good idea to get those things checked I think.. I'll add that to the new blood work I'm scheduled to get - I think I'd like to add Lyme in there too..

It's crazy I know I didn't realize how sick I was - i was too busy going on with kids, work life etc.. then one day realized something was VERY much wrong.. I'm lucky to have gluten issues diagnosed fairly quickly, however if these neuro symptoms and other wierd things would start improving my sanity would soon follow i'm sure Thanks again!

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 week my intestines started to heal (aka going from up to 20 bowel movements a day down to less than 5 or so). I also stopped breastfeeding (I was about 7 months post partum- after landing in the hospital for malnutrition figured my baby wasn't getting a lot of benefit anymore and I surely wasn't either) and switched to a gluten free multivitamin and took an additional B complex.

You excrete vitamin B6 in breastmilk, and I had mentioned to my husband I thought it was strange I was urinating so much when I wasn't really drinking that many fluids (you of course also excrete B6 through your urine). Anyhow I had "dead legs and arms"/numbness tingling and weakness of hands.

I had my B12 level come back in the 1000's and we started scratching our heads.. I have been on a B6 supplement (100mg) for 4 years (I have a blood clotting disorder MTHFR where you are supposed to supplement) the only option over the counter was 100mg.. so add that to the 100mg of B6 in my new multivitamin I was taking, along with a B complex (i think only 3mg of B6) and all my B6 drinks along with no longer excreting it in breastmilk= neurotoxic B6 (that's what my Gi dr is saying anyhow)

We had my levels checked about 2 weeks after I had stopped my B6 and they were still double the upper limit of normal.. apparently this can take 6 months or more to resolve, if ever!

Anyhow kind of crazy! B12 seems to be very safe, but when it comes to B6 I guess that's another story!

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!

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.. have you elimated that from your diet? I feel like since eliminating that I may be on the right road.. good luck! I had no idea there was such a learning curve to this all!!!

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 before we figured out that it was celiac (i had a lot of weight loss suddenly) my neuro/muscular symptoms really started after I went gluten free (that week).. so curious if yall found any answers!? thanks!

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 see improvement there)!

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 most of my life from time to time and have always written it off as I got bit by something or a wierd heat rash etc.. Does that sound like DH to yall?? THanks in advance!

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 I supposed to stay away from Whey as well?? I want to feel better so badly, so I'll do whatever it takes! thanks in advance!

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' induces some sort of atypical migraine like reaction.. But it is WIERD and I'd much rather have a glass of wine (not that I"m going to even do that for a long long long time), but no more caisen for me from now on!! I also got the twiches and muscle spasms BAD for a few days.. still going on, but getting better.. I had been avoiding dairy, but not butter. There is a serious learning curve to all of this!

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 run them through their lab just to have them inaccurate.. I have wierd neuro/muscle twitching headache issues.. could be all celiac.. but the more I read on here, the more I wonder if I should also rule out Lyme especially since I lived in the Northeast for a while.. Thanks so much for ANY info!

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 people had neuro symptoms too, and that it just takes time..

AVR- I think I need to start supplementing on some vitamins again.. I need to get my Vitamin D Rx- it was pretty low.. My gerd responded great to Dexilant..(after they saw my espohagitis on endoscopy) but if i miss a few days its back with a vengence.. I'm scared to supplement too many vitamins right now since They think I was also B6 toxic!...I should have more results tomorrow from labs

John- thanks for your reply... It is great hearing that other people have similar symptoms (helps me feel a little less crazy!! I also get shocking/intense tingles etc in my extremities where they previously felt "dead" the past few weeks.. I was also hoping it was nerve regeneration/healing! Did your face ever get tired after simply smiling?? If i smile much my facial muscles are just wiped out!

Awakening- you said your neuro issues got worse before getting better... Did they get worse after you started the gluten free diet?? My neuro symptoms started the same week I went gluten free (granted I was still eating some caisen- I hadn't realized I had an issue with that). I need to be patient, but I just want my body to show me that it will either get better, or at least not worse.. I get freaked out after being worked up for ALS, when my symptoms get worse that panic in the back of my mind still sets in a little!

Quincy- that is great to know that those two chains seem truely have gluten free.. We never eat out now.. and hardly did before. And after having my caisen ingestion all week last week I have become super paranoid about any cross contamination.. I'm avoiding ALL processed foods even gluten free for now.. I had no idea that my body would be so sensitive.. I simplly thought- it says gluten free i'm good! Who knew!!!

Thank yall so much, I can't tell you how much your responses help me and my sanity!

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 around yesterday a bit (which isn't anything new- but it was on rougher/rocky terrain) and now I feel like I ran a marathon!!

It literally feels like I went to the gym my legs ache/are sore (build up of lactic acid feeling)so badly!! Is this normal?? I just feel like I'm falling apart still! But my GI symptoms are better in the last 24 hours.. not sure if this is just a result from all of that or not! Thanks!

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 and get muscle cramps badly with all of this??

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 top it off.. My whole body felt more numb and tingly than normal (usually its just my arms and legs fro the neuropathy).. how long does it last for yall?

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?

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 a big thing of ice cream - two nights in a row, that it was not sitting well with me! Cutting out dairy and gluten has made a big difference, but it did take some time.. Good luck, I'm sure it will all be just fine, and as others have said,

It does just take time- the dr's might not understand that as much as people who have actually been through it! They also don't understand how a few words can send us into total panic (been there recently!!)

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 too - suddenly I feel drunk! Disoriented, can't walk straight (ataxia) I have had peripheral neuropathy with numbness and some weakness.. but the numbness had resolved the past 3 days until last night it returned and now my arms legs and even trunk are totally numb!!!! tingly a little, but I coudln't even tel that my hand was in hot water earlier!!

ANyhow I was reading about the neurological/ celiac ataxia stufff. looks like caisen is a problem with a lot of neuro affected celiacs... I have been avoiding dairy, but didn't even realize I did put a stick of butter into the cookies... does butter have caisen in it??

Sorry for the mispellings I'm sure i've made- as I said I feel intoxicated and very disoriented! So strange!!!

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 this all started I lost 16lbs abruptly (I'm thin in the first place) and went from having one bowel movement a day to 15+ and I was eating everything in site (loooots of gluten filled cookies included) to gain weight! I have gained 9lbs back!!! My extreme hunger seems to be improving, still hungry a lot, but I don't feel like im starving to death anymore thank goodness! And bowel habits are back down to once a day or maybe twice ... How long did it take yall that had these symptoms to get back to "normal" or did you ever??

My Neuro symptoms (diagnosed as peripheral neuropathy with sensory and motor involvement- ? CIPD/guilliane barre possibility) I think are stablizing.. I'm not longer waking up at night with the "dead" arms and legs sensations.. I am tingling more.. which is an improvement from total numbness.. and at times I feel my montor function MAY be better.. but I don't think worse.... (the neuro stuff all got worse the week i went gluten free) My mind is still completely frazzled (mostly from all the emotional trauma of the possibilities of the neuro stuff being something worse!!!!

Anyhow, I was just curious how this all measured up to everyone elses experience! Thanks!!!

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 sulfite free... no hangover! At least when drank in moderation! Someday I might brave it again!!!

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.. I asked him about occupational therapy/PT - my job requires very fine motor skills .. thankfully i work with understanding people who are helping me out at the moment. But he said that he couldn't really appreciate any clinical weakness (even though the EMG showed it and I was telling him I have it). that since i don't have actual wrist or foot drop etc.. no need for PT, that I can just exercise at home.. My husband and I both think that it would be beneficial to go to OT/PT so that in the least I could hopefully track that I am in deed improving, not worsening, just for my sanity sake!! I may ask my PCP for a PT scrip anyways.. It's not like it is going to hurt!!!

When did you first start noticing improvement, even the slightest do you think? I'm 5 weeks out (granted this all started 5 weeks ago too - the neuro part of it)... I am still awaiting my B6 level (5 weeks ago i stopped breastfeeding and changed to a new multivitamin and B supplement in addition to the 100mg of B6 I had been taking for 3 years- oopps!!! they think between my intestines healing up and no longer excreting it into my breastmilk I may actually have B6 toxicity)!! so who knows!!it's all crazy, and definetly plays mind games on me!

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 with my hands/ends of my fingers its just this awful feeling of weakness etc which by the end of the day I get frazzled and worried that maybe something worse is going on... ugh, such a mind game inside my head!! ha... I"m just ready to see definte improvement, or at least a while without definte weakness so I can relax a bit more...

I just about had a heart attack- I went to the Neuro dr yesterday and he looked at the EMG and said the other dr had completely misinterrpreted the EMG, that it was not normal afterall - that it showed diffused damage---- just imagine the panic that I started feeling - I think my heartrate shot up .. but then the neurologist followed with that kind of damage isn't consistent with ALS or MS, but instead peripheral neuropathy of some sort.... HE believes I have a GUillian Barree variant (a chronic form that causes peripheral neuropathy -sensory and motor) and that it can take 6 months to a year to improve.. of course he discounted celiac as a cause right off the bat.. so who knows..from reading on here, it seems that so many other people have similiar symptoms.. I couldn't even feel him touching my legs with the "cold" object until he got up to my thighs... so crazy - i'm only 31 and he said my nerves looked like a 90 year old on the EMG/NVC tests..

So I'm still a little freaked out... not knowing if this is going to get worse before it gets better etc... So I guess only time will tell... as long as it's nothing too horrible like ALS I can handle it, but i'm still a little scared for sure....

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 (besides an occasional cramp that once a year i'd take an advil for) anyhow in efforts to do any and everything to help out for fertility sake I did a lot of research on endometriosis etc... turns out that they think not only endometriosis pains, but also the inflammation caused by the endometriosis itself is worsened by gluten.. since endometriosis is also an autoimmune disorder (they believe) .. SO i immediately went gluten free.. this is actually when We first got pregnant! So i couldn't tell if my pains changed or not, since I never really had any.. it was either coincidence or it did decrease the inflammation and help us get pregnant... there are a few studies out there showing how it helps! Now fast forward 4 years.. turns out i have a gluten issue! Shoulda figured that out then I guess!!! Good luck!