bny06

thank yall!! Yes ravenwood- After fearing the absolute worse I think simply staying away from gluten is the best daignosis ever!!!! It has been quite a mind trip the past week or so! Everything else is getting so much better- my stomach, bowel habits, gaining weight and my hormones finally are getting back into order (I didn't have a period for a long time due to the stress and weight loss on my body i guess)... So now I Just need this neuro stuff to either improve or not get worse and I'm good and avoiding gluten forever more!!!

thank yall so very much for all the advice.... we recieved GREAT news this morning - no ALS!!!! Phewww!!!! I had minor nerve damage on my leg that he says will resolve.. from the weight loss irritating my nerves the way i sit.. but no signs of ALS.. THank God!!! So now i'm just hoping my sypmtoms at least don't worsen much more, and hopefully improve.. but no als, is probably the best thing i've heard my whole entire life!!!

thanks so much for all the advice.... I go for the emg tomorrow and i'm absolutely besides myself terrified...

I live in Dallas, and recently discovered i had celiac.. but i'm also having wierd neuro symptoms since starting gluten free- I really want to see a doc that knows the relationship with celiac and neuro- we are willing to fly somewhere, but of course would rather not. ANY advice greatly appreciated! thank you!

Takala.. thank you.. Yea I know my dr kept asking me about my stress level, and the only thing I could say was the only thing stressing me out is this whole issue! When I saw the neurologist and they took me so seriously and scheduled the EMG for first thing monday morning (the soonest they could do it) though i'm glad they took me seriously, it also freaked me out more.... Did you ever have actual weakness??? I had generalized muscle "fatigue" for months, but this hand and thumb weakness has been constant jello fingers (the tips of them/the last joint and whole thumb) for 2 weeks.. I will gladly never touch a single bit of gluten or whatever else it takes if i can get cleared of a ALS diagnosis on monday.. I"m scared! My MRI was clean.. I'm wishing there were spots on it so i could at least be less concerned about als that way...

Thank yall so much.. I am just beside myself with anxiety with this whole thing.... I just so badly wanted the neurologist to tell me "oh no, of course it's not ALS", but when I saw the look on his face with some of my tests/reflexes and then the mention of those three horrible letters, I have since been a mess!!

Do yall know if my B12 levels were "off the charts" - in the 1000's.. do you think that would also mean I'm absorbing B6 that well too?? Also the thing that freaks me out is I cna't find any B6 toxicity information that says you have actual muscle weakness (i have true thumb and finger weakness.. constant x 2 weeks

Yolo- thank you! with salicylate sensitivity. does that mean i'd be sensitive to asprin?? I take a daily baby asprin for a blood clotting disorder (they found when I had lots of miscarriages)

Thank yall.. and please any other advice/experiences may help calm my freaking out that is currently happening!!!

I have been gluten free for 4 weeks now..... when i started going gluten free I noticed My right knee felt a little weak.. then two weeks ago my wrists felt weak and numb.. then I noticed last week my thumbs and other fingers were actually weak - loss of dexterity and pushing buttons my fingers kind of fold up on me.. i'm a 30 year old female, so I know ALS isn't likely in my age group.. I have kept the fear in the back of my head for weeks.. until today when i went to see a neurologist.. He said he was concerned for ALS (we will have more of a workup on monday)... I am obviously panicking now..

THe only thing I don't understand .. how could i have lost 16lbs, had sudden change of bowel habts (going from once if that a day to 12 or more times, abd pain etc) and be diagnosed with celiac and then have ALS onset at the same time??? My husband and I were wracking our brains- obviously trying to figure out a different explanation.. I did start increasing my B6 dosage on accident (there was an addistional 100 in my new gluten free multivitamin) I started taking a new B complex and was also taking my usual B vitamins i've taken for years (for a blood clotting disorder)

Can a B6 toxcity mimic als?? with the weakness and everything? I have all over muscle twitching and cramping as well - my magnesium level was normal, and awaiting on vitamin D... ANY advice/experience is greatly appreciated.. I have two kids under the age of 2 and i'm so upset right now..

Thanks so much yall!! Well I had my MRI's and they look clean- phew! I got my biopsy results as well, and they were "normal" but i had been eating gluten free for 2 weeks so not sure what that means! My b12 levels were in the 1000's supposedly.. can you have B12 toxicity??? I started thinking maybe i have some wierd presentation of carpal tunnel or something?

Thanks so much yall! I have only been gluten free for almost 4 weeks, and i'm sure making lots of mistakes along the way! My neuro symptoms seem to be getting worse, defintely not improving! I have an MRI of my head and neck tomorrow, if it was something like MS I need to do something to stop the progression of losing my dexterity! It's freaking me out, and really interfering with my job and daily living!

They checked my B12 levels last week and i was told they were normal - i'm going to ask for exact numbers when I go back to the GI on monday. I have been taking the sulbingual B12 anyways for about a week.

I keep telling myself the likely hood of it being two separate issues is rare- that I not only have celiac diagnosed and the wt loss and malnutrition from that the same time I develop major symptoms of another disease (though I know some can go hand in hand - but to present at the same time?????) that it is likely celiac.. however I can't stand having this big unkown and my hands and leg continue to get worse if something may help.. hopefully it will just be celiac and I just need to give it some more time!

thanks! I was wondering about the mints too actually! I had wintergreen altoids and wasn't sure if they were safe either! thats good to know about malodextrin -i dind't know what that was! thanks yall!

thanks!!! Yea, i was taking too much and unfortuantely was causing more GI issues.. but did help the muscles.. I eat at least an avacado a day or so.. and about three bananas ha! Sooo.. i'll ask my dr if they can rx any magnesium that doesn't cause any GI upset, i'm not a fan of the twitches, though I can totally live with it of course!

Ok, i'm new to all of this, but are all gums/sugar free gums gluten free?? Thanks!

I was curious who all on here has been evaluated for MS and it ended up being celiac? I am almost 4 weeks out on a gluten free diet, and continue to have loss of dexterity/fine motor skills in both hands with numbness/tingling and i'm worried that my symptoms seem a lot like MS, so am now awaiting a workup for that too. ugh! Anyhow, anyones experiences/advice is greatly appreciated!! Thanks!

thanks yall... avr- I have stayed off dairy for about three weeks now- I realized after eating a huge bowl of ice cream a couple of times about 4 weeks ago to try and ingest calories and then my tummy getting REALLY mad at me, that diary must also be an issue! Do the bathroom trips usually slow by almost 4 weeks?? I have just figured I had so much damage that it would take more time.. but I'm SOO ready for more improvement! I am overall feeling better (with the exception of the worsening hand weakness- again freaking me out completely) I am not feeling like my blood sugars are tanking throughout the day like they were, overall my genearlized weakness and icky feeling feels better... it's defintely starting to mentally wear me down a little that My hnads aren't getting better

Thanks yall!! I started taking magnesium malate supplements two days ago and I have to say that my muscle twitches do seem to be better already, though my muscle weakness in my hands is defintely not changed, which freaks me out!!!! gfreelady- I wish constipation was my issue! I'm not quite 4 weeks out on my gluten free diet and unfortuntely have to use the facilities up to 8-10 times a day ughh..so i want the muscle stuff gone like yesterday, but I don't want it to cause me to have to use the restroom anymore than I already am thats for sure!!

Thanks so much yall!! I"ll take the hunger, though in reality I don't have the time to always be thinking about what to eat or eating, but WHATEVER it takes for me to feel "normal" again I"ll do!! I don't konw what i'd do without my enlive (ensure juice) drinks! My stomach is finally feeling better, hunger is about the same, its just this crazy nerve/muscle stuff I could really do without!!!! Thanks agian for all of yalls replies!!

I tried the magnesium the past couple of days and it defintely seems to be helping the muscle spasms! however I still have pretty crazy hand weakness - typing feels like i have lost some of my dexerity and I'm totally freaked out by that! (did yall have anything like that??) did magnesium or the gluten free diet seem to help with those type of sypmtoms too??? I'm almost 4 weeks into gluten free... ugh.. i just wish things happened faster!!! I can't wait to go on a jog again!!!

I am completely with yall on the forearm/hand discomfort!!! It started with a fatigued muscles on the top of my hands/forearms after typing at work (all fingers, not typical carpal tunnel like symptoms), and since I feel like my hands are weak and wrists hurt if i put my weight on my hands. It's like my muscles are not happy with me trying to overuse them on my arms- which is quite inconvient with two little ones and a job that requires a lot of dexterity! Is this how yall feel? like yall have bad muscle fatigue in your arms? I wake up at night sometimes with both of them achy/numb feeling too.. I started taking magnesium, vitamin D and getting some sun, in hopes that this improves! I also have muscle cramping too- do yall? I'm 3 weeks or so out on the gluten free diet, so this is all new to me and I feel like I have a long way to go to recovery!

Thanks for the reply! I'll talk to him about it at my follow up appointment (hoping to at least have biopsy results on wednesday). As I read more online about it (what did we do before the day of internet surfing??) it looks like a false positive is common when receiving proton pump inhibitors.. I was getting IV protonix for 24 hours when they drew the lab.. soooo I'm now thinking that was the cause.. but i'll be sure and have them recheck to make sure it is staying the same or going down- but not up, or i'll have to worry! Thanks again!

Thanks so much yall!!! I am going to go get some good vitamins- I not only need the nutrients badly at this point, but also don't want all my efforts of being gluten free to be counteracted by ingesting a gluten containing vitamin! I appreciate yalls help!

So i'm awaiting my biopsy results which I should get this week, however I have been wracking my brain trying to think why am I overall feeling better (3.5 weeks or so on gluten free diet) but my muscles seem weaker when I use them a lot.. then I started thinking, the only day that I have felt better as far as my muscle weakness/twitching goes was the day I got scoped- after drinking Magnesium prep! Maybe I finally figured out what is causing this!! Anyone take a magnesium supplement, and if so what kind and how much do you take? can you take too much? Thanks so much for ANY advice!!

thanks so much! i'm glad to know i'm not the only one feeling this way! All my friends joke that I must have tape worm or something, i am eating SOO much, and was losing weight until going on the gluten free diet. Now i've gained 5lbs in 3 weeks whooo! I'm really excited about that!! As far as the thyroid goes, a few months ago (i'm currently 6 months post partum) i swore I had post partum hyperthyroid, i have had it checked 3 times, since all the dr's sware it sounds like hyperthyroid as well, but every single time all the thyroid labs are stone cold normal! That's what made me have to start thinking about other causes of these symptoms and we started narrowing it down to a GI issue. I am eating 4-5 meals of meat/veggies/rissoto/potatoes etc a day, we eat a lot of avacadoes as well, i'm still a little hesitant to eat nuts, since they can speed up my system (intestines) a little and since thats already a problem I don't want to exacerbate it!

I am awaiting my biopsy results to confirm celiac, they didn't see any evidence of crohns on my colonoscopy/endoscopy, ct scan, etc.. however today I got lab results for an elevated chromogranin A.. I am not familiar with this test, but it appears it can be elevated in crohns and celiac, and some other things that are kinda "scarey" cancers and such.. I'm 30 years old, so I am hoping its just related to the bowel issues and the likely celiac, however I was just curious if anyone else ever tested for this.. It was my GI dr that ordered the test. THanks!

Hello! i'm new to this all too! I'm 3 weeks in to what I think is gluten free, though i'm sure i'm making mistakes! I feel like just the past few days I have noticed some improvement in my stomach symptoms... maaaybe.. my muscle weakness overall has maybe improved a touch, but I still feel weak all over, and just overall a little less "crummy" than I did a couple of weeks ago.. I also just want to suddenly feel back like my old self already! I didn't realize it could take so long! I'm curious how long it took others as well!

I'm having so many of these symptoms as well- my hands and wrists feel so weak! It's hard to type as fast as I usually do.. and i feel like the symptoms have gotten a little worse since going gluten free as well (3 weeks) anyone else get worse symptoms when they went gluten free at first, if so how much longer did the worsen (the thought of this getting a lot worse scares me - i need good dexterity for my job and kids), and when did it finally start turning around and improving? Thanks!