This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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..
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!
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!