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
I can really relate to feeling off. I feel like I have only had hours of feeling "normal", not even days, since all this craziness started. I too had a crazy reflux episode that I can't believe was reflux and it was so crazy and painful and heart attack like. I have also had dizziness, nausea, severe headaches, all in "attacks" that keep me in bed or at home for stretches at a time. Doctors have kind of "undiagnosed" me from Celiac and are saying it's migraines and migraine variants and who knows if they are right. but i have been off gluten since May as i am willing to do or try anything to feel normal. Are you taking anything to help with reflux. Protonix has helped my reflux issues and I am taking a Magenesium, B2 supplement that's supposed to help avoid migraines.
It is really frustrating to not feel close to normal and not have any answers from doctors though. Hang in there. Good luck to you.
i was tested for this by the GI doctor - it was a hydrogen breath test and it is an easy but several hours long procedure. you just have to drink a fructose mixture and then breathe into this device over a period of several hours. mine came back negative, along with everything else, so I'm in a state of waiting and still being gluten/dairy free until I feel better. but I know that people do react to fructose and it can be checked out for you. good luck.
just at my little regular neighborhood grocery store, they have some gluten-free foods that are pretty good. there are mi-del mini chocolate chip cookies that i really like for a treat and so you don't feel deprived. you really don't need to feel deprived to be gluten-free and when eating at home.
thansk for posting - i'll keep the gatorage or dehydration issue in mind. i have been having crazy headaches both before and after going gluten-free. i have been "un-diagnosed" with Celiac and Meniere's (inner ear problem that causes dizzy bouts) and doctor's now are saying that maybe all my symptoms have been coming from migraines and migraine variants. I ended up in the hospital last spring and dehydration was one of the main findings. so maybe, for whatever reason, i am getting dehydrated really quickly and it is escalating these migraines. i am willing to try anything for sure. i am staying gluten free as the doctor said that maybe i was gluten sensitive and gluten can trigger migraines. also, dairy free. like is said, i will try anything to get back to feeling decent again. hope this works for you too.
i havenoticed that since the weather is cooler, i am feeling better too. maybe it is really hard to stay hydrated during hot days for those who are having issues with dehydration. i drank water like crazy and sea salt mixed with sugar and water. who knows?
sorry to hear that - that's silly. so you have to waste your time 1st and then they'll take you, huh? that's annoying. i did have to send slides and paperwork for them to take me but i thought that was because i was questioning the diagnosis and it would be a second opinion. i didn't know they wouldn't take you otherwise. i'll keep me ears open about a demotologist but don't know one to refer you to right now.
I did get the gene tests after not getting all better after Gluten-free Casein-free. I do not have the genes for Celiac but the doctor said that I could still have issues with gluten and will have to try a challenge and see how I feel (once I feel better).
I am still having symptoms too and have been really good about eating whole and natural gluten-free foods since May/early June of this year. I am not willing to try gluten yet as I do notice some improvements since then (was in the hospital for 6 days, very sick and now I am functional - just crazy headaches and nausea and now reflux apparently).
So hope this helps you decide - do whatever it takes to make you feel confident that you are doing the right thing on the road to recovery. I honestly don't know what is going on with my body ( and neither did the many doctors I have seen) but I do know that Gluten-free Casein-free can't hurt in the recovery process if I just had some crazy infection or something - and eating it could hurt if I have some sensitivity to it. Good luck in deciding what to do next.
Dr. Murray really emphasized to me that I could have a gluten sensitivity, although I do not have the genes for Celiac. He encouraged me to feel better first and then try gluten and if I feel any raection to get right off of it as there are people out there that do not have Celiac gene but can not handle gluten in their diets. He also wanted me to call him if I found out I was one of these people as he said he wants to know for future reference. Maybe he is running across more people like this. Anyway, that's what I got from my visit from him - no genes but gluten could still be an issue and the diet will tell.
For me, right now I am still having crazy headaches, nausea, and weird symtoms and have been on Gluten-free Casein-free diet since early June. So I really don't know if gluten is the issue but am not feeling well enough to try it out and will remain gluten-free indefinitely for now.
I know it's a bit of a drive but I would consider just driving down to Mayo Clinic. They have a Celiac expert in the GI department who can hook you up with all you will need if it is DH and make you feel confident in the diagnosis. I am on the north side (WHite Bear Lake) and it only took an hour and 15 minutes to drive down there. It's not as far as you might think and they are one of the best for diagnosis and information on Celiac and I think they would be great for a DH diagnosis as well.
As I understand, you can have the genes for Celiac but not have Celiac - it doesn't mean that you will eventually get it either. If the biopsy did not show damage to the villi and all blood tests (besides gene test) were negative, he does not have Celiac. I think that around 30% of the population has the gene markers (could be wrong but I know it's a much larger # than actually have Celiac). Because he has the genes, I think that he could or could not have issues in the future.
Also, I do not have the genes for Celiac but my docotr said that this doesn't mean that I don't have some gluten sensitivity.
So, it all comes down to trying the diet for a good trial (like months, not weeks) and seeing if symtoms get better. Hope this helps.
There are many much more knoweldgable than me on here that will hopefully respond and clarify.
i'm just throwing another idea out there but i would think that doctor's would have recognized this - my daughter had a skin rash called mollescum contageum (don't know the spelling anymore) and it looked a bit like that. it was one her butt for almost a year and the doctor said it was just a virus and we couldn't do anything but leave it alone. they would spread and be horrible looking sometimes (like 20-30 of them) and then there would be a couple left and then it would start again with lots of bumps. she would itch at them at times but they weren't incredibly itchy (but she was only 2 years old so who knows what she got used to).
we finally got sick of it and looked up some ideas on the internet. we tried this cream and it kiind of made the bumps break open and then heal up and after starting the cream, it was gone in around 3 weeks. she hasn't had any recurrence in over a year. just letting you know of another possible thing it could be so you could look it up more for yourself. my daughter is perfectly healthy - usually people with surpressed immune systems get this but the doctor said that children can often get them due to their under-developed immune systems.
I'm sure you know this but stress is a big factor in stuttering and stuttering is a thing that seems to come and go in people's lives. when your body is under stress (i.e. getting glutened) i think that it would be very likely that especially if you had a history of stuttering, it would emerge again.
i will have to think about the idea that gluten may have been the neurological cause of your stuttering all along. i am a speech therapist and found all these postings interesting for sure. the brain is such an amazing thing and i guess gluten in us people who can't handle it is truly a neuro toxin that can affect the speech areas of the brain - but hopefully just temporarily.
That feeling that something else must be wrong I think seems to be common from what I've read of others and what I've experienced. i'm thinking it's part of the denial process that we're in when diagnosed. I've had many symptoms that have come and gone over the past months and I am so careful with food (no eating out, whole house is gluten-free, etc) and I'm guessing it's all part of the healing process - at least that's what I hope. I don't think I realy understand how serious this disease is and how hard it is on the body - but good news is we will heal and be ok, it just may take a while.
me too... before diagnosis the dizziness was becoming worse and worse. i had tingling hands and feet, jerks that would wake me up at night, seeing stars, heart racing to name a few. i also had migraine headaches for several years. it was not until around 2-3 month before diagnosis that i had ANY GI symptoms at all. since going gluten-free, all of these are slowly getting better.
i would really try not to think that something else is wrong as this became a major worry of mine. recovering from Celiac's for me was a slow process that had many old symptoms and some new ones (i just started having reflux around a week ago and thought something else major was going wrong). but from what I've read, it takes time to heal and especially seems true with those with neuro symtoms. good luck and worry is not good for anything.
i would say to get a second opinion from another GI too. i am waiting to get a second look at my endoscopy as i had negative bloodwork but positive biopsy too. brfore going gluten-free, i did have GI symptoms after months of not having GI symptoms but other symptoms (dizziness, headaches, bouts of illness). It seemed to escalate to GI symptoms and weight loss before i was finally diagnosed. I am doing better on gluten-free but still having really bad bouts so that's why i am getting a second opinion and hopefully further tests to find out what else is going on. i am not a pushy person and it took some time and pushing from family members to make me follow through with this but i think it will be worth it. is there a celiac expert in your area, like a university or something that you could go to? good luck feeling better.
it's tough i know. i have pretty understanding boss and coworkers and i still feel guilty but i also realize that i need to take care of myself or i could end up back in the hospital and that is good for no one. maybe you could start looking for a new job or different source of income while you keep this job - but it's a hard situation when your health is not great to get a new job. i hope you feel better soon and try not to take your boss personally as he/she obviously has never been in your shoes so doesn't really understand.