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
Thank you for replying again, its very kind of you all. Cavernio, i will take the article in with me. I was going to take one about gluten ataxia too. I hope it doesnt get the neuros back up. I cant get an appointment for another two weeks! I have been downing lots of b12 and the tingling extremities and hands falling asleep ive had for years is alot better. So i know i was deficient in it, whether it was bad enough to cause brain lesions i dont know. I really hope so.
Thanks Foam for telling me your dads story. Thats amazing he managed to cure himself. I have had ME/CFS so 11 years and have tried everything under the sun to try and cure myself. Some absolutely ridiculous things! For some reason i never really did much with my diet. My stomach was the one thing i didnt really have any problems with so i didnt think it would help. Since starting the gluten-free diet i am amazed at the brain fog finally lifting and wish id done it years ago.
At the moment im having trouble with the diet. Really aggravated stomach, it really hurts. Cant understand because im on such a strict diet. Im definitely not getting cc so i must be developing more intolerances. Its making me much more tired and a bit of brain fogs coming back. In a strange way, at least the pain and the trying to work out whats going on in my tummy, is taking my mind of the suspected ms.
Hi, thank you all so much for your replies. Cavernio, thank you for your great explanation. It makes sense to me. Ive never been diagnosed celiac but the lifting of brain fog ive had since i went gluten free makes me think i may be. Im really hoping this is a b12 problem and not ms, obviously. I would imagine i was very low in b12 when i started the diet because i was sticking to fruit, veg, nuts, rice and soy. Also when i first started getting the swelling in my tongue i thought i was having an intolerance to something else and cut out dairy. That would have made b12 even lower.
It all seems such a coincidence that this suddenly happened when i made a big change to my diet. I dont know if a neurologist will consider b12 lesions or not. Ive not spoke to one. I went to the hospital 3 weeks ago, got a brain scan, they told me i had a brain tumor, stroke or ms. Five minutes later they had me out the door and had to wait a week and a half for an MRI. All ive had is a call from my GP saying they think its ms. Im a total wreck just now! I expected going gluten free to help me neurologically.
Ive been taking large doses of sublingual B12. The inside of my cheeks swelled up last week, i took some iron and this took them down a good bit. My tongue is still a little swollen though. Sorry this is a bit disjointed, i wrote another reply and lost it. Thanks so much for you help.
Hi, im back again with another theory. I wrote last week how i started a gluten free diet and after about a month started to slur my words. It got quite bad, tongue swelled up and i was finding it hard to form sentences. I went to a and e, then did a brain scan. I was sent for MRI told i probably have MS. I havent spoke to a neurologist yet, just waiting for an appointment.
Im trying to find alternatives to this diagnosis and it seems a coincidence this happened when i changed my diet. I have been reading about b12 brain lesions. I realised that first month of the diet i probably hadnt eaten anything with b12 in it. Im vegetarian and wasnt eating gluten free bread etc.
After reading about b12, i starting taking some. My speech came back after about 2 or 3 days of taking b12. I have all the symptoms of b12 deficiency as i have cfs. I also found this interesting article on fingernails
My are the exact same, ridged with blue skin underneath.
Anyway what i wanted to ask is do you think my B12 levels could have dropped much further in my first gluten-free month and caused speech problems and be the possible cause of the brain lesions?
This might be a stupid question-could i have had b12 in my blood before gluten-free diet but i wasnt able to absorb it properly, then i stop gluten and i suddenly absorb the b12 i have in my blood. Then i dont eat any b12 for a month causing a huge drop. Am i being mad?
Just a quick question, i was tested for endomysial antibody iga when i asked the dr for a celiac test. I have CFS and thought it might be the cause. I have a copy of the results, they just say "endomysia antibody iga N". Is this test alone enough to prove im not celiac? I went gluten free a couple of months ago and feel clearer headed so wont be going back to gluten. I just wondered? Thanks for any info.
Thank you Kamma, youve been very helpful and kind. Thanks for letting me know what to expect in the EPT test. Ill let you know how i get on. x
Thanks VeggieGirl, that sounds like it would be a great idea. I will definitely get in touch with you for more details, if you dont mind. Provided i dont come out positive for MS that is .
Thank you again Kammy for helping. I didnt even read his background info or anything! Im not thinking straight.
Ive read the articles by Hadjivassilliou and Im going to print them out and take them with me. I think the one with the four MRI images will hopefully convince him to listen to me. Hadjivassilliou is in Sheffield and im in Glasgow so if i ever wanted to try and see him it might be possible, which is good.
Im just waiting for my next appointment, think itll be in a couple of days. I think ill pass the clinical test, all my reflexes are ok but dont know if this will make any difference if they have lesions on a MRI scan.
Thanks for your replies and thanks Kamma for all the links. I will read up more and maybe take some print outs with me. Im feeling less confident today that its the gluten. I wrote my story on Dr Charles Parkers web page, an expert in gluten and this is what he said:
Highly unlike that was related to withdrawal from Gluten – more likely in the process of detox some other elements were mobilized on some level and you had a toxic reaction. If you had/have MS, that reaction didn’t cause it, it likely only aggravated a quiescent pre-existing condition. Very unusual. Your prognosis is more encouraging and positive in the sense that it took a real insult to reveal the issues. Strongly recommend IgG testing and Trace Element Review.
I think ive brought dormant ms on by detoxing too quick. I also had a bad flu a week into starting my diet. Ive put too much pressure on my body. Im still so scared but theres nothing i can do but wait for more tests.
Thank you everyone, your posts have made me cry with hope. Thank you for taking the time to write to me and give me al this info. I have more testing next week, i think clinical and looking in my eyes and things. There has been about 3 people look at my scans because my cousin works at the hospital and got a second opinion. They said is some kind of ms illness. He said there wasnt many lesions but there was one on my speech, which explains why i lost my speech was so bad for a couple of weeks. Where are celiac lesions normally and whats the difference in apperance? Im not confirmed celiac, i just went gluten-free a few weeks ago and felt so much better. Thats why this is such a shock. With my m.e/cfs ive felt awful for years and barely been out the house the last couple but when i went to a and e with the speech problem i felt good, iw as coping with light, noise, everything. I thought id finally cracked it and then this news. Will a normal neurologist be familiar with celiac scarring?
Thank you so much
Hi, ive been gluten free about 5 weeks. I had been housebound with CFS. After a couple of weeks off gluten i was feeling much better so much clearer in the head. Then about 3 weeks in my speech started to slur a bit then my tongue swelled up and once it went down my speech was so bad, stammering, stuttering, slurring. I had thought it was a withdrawal but my friend took me to a and e. They did a brain scan told me i had a stroke,ms or tumor. And tehn sent me home. With a referal for MRI in 8 days. Ive had the MRI results, they say its ms. Im terrified and devestated.
I have been reading about ataxia lesions and how similar they are to ms. It seems such a coincidence this happened just as i gave up gluten. He said there wasnt a lot of lesions but one on my speech centre. Can any of you give me advice on this or am i just clutching at straws? Thank you so much. Leis
Well its still swollen today but my inner cheeks seem to be more of a problem. Theyve swelled up quite alot in the night! Quite sore too as my teeth are cutting them and my tongue. I tried an anti histamine last night but it didnt make much difference. Im going to stay away from milk today and see if that helps! Thanks Leis x
Thanks for your replies. I was thinking maybe an allergy was showing up. Think it might be milk, i drink the lactose free stuff as im lactose intolerant. Boo, i hope not. The inside of my cheeks are swollen too, i hope this isnt going to happen all the time.
My boyfriend looks after me. I dont think its a stroke as it came on gradually over the week. I thought it might be an allergy but ive been eating quite simple food and nothing that ive never had before. Its not hugely swollen, just feels big in my mouth and is over my teeth instead of inbetween them. I think its just too swollen to form words properly. I hope it goes away, its embarrassing!
I started a gluten free diet 3 weeks ago. I have been bedbound for 11 years witha diagnosis of cfs. I have been feeling a bit more clear headed but the last week ive started to slur my words. Ive never had this before. Today people cant understand me at all. Its really got me quite scared. I think my tongue is swollen. Why is this happening? I know i havent accidently eaten any gluten. Would really appreciate some help, thanks. Leis.