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 had most of your symptoms as well. I was diagnosed over 10 months ago and still have bad days even though I am extremely careful with my diet. I remember thinking I was going to die because I felt so bad. What I didn't throw up came out the other end like water. I crawled up the stairs in our house because I was too weak to climb them. I kept thinking they had misdiagnosed me even though I was told it could take 2 years to feel better "most of the time". Then slowly I started to feel better (about 3 months into it). Now I have several good days a month, although during times of high anxiety some of the symptoms return. In additions to a high potency multi vitamin, I was told to take Vitamin K and acidophillus (a pill form of the good bacteria found in yogurt). I also lived on bananas and rice for a while, then slowly started to add other basic foods back in. It can be very frustrating, but hang in there!
I was diagnosed 10 months ago and still have bad days even though I'm extremely careful with my diet. I was told it could take 2 years to feel better "most of the time". Also, when I'm extremely stressed out, I get symptoms even though I haven't eaten any gluten. It's really frustating, but I just try to really enjoy the good days when I have them. Remember, everyone is different and it will take time to "heal". PS- I eat lots of bananas and rice. ;-)
I had several of your symptoms before being diagnosed with Celiac in November 08. Fatigue, muscle aches, pain in my cheekbones with lots of sinus drainage, depression, anxiety, headaches, numbness, hot flashes, the usual diarrhea and vomiting, and just a overall "weird" feeling... like I wasn't even in my body at times. The rash on your face however could be Lupus. Anyway you look at it, it sounds like you have an autoimmune disease and need to see a rheumatologist if you haven't already.
Best of luck to you! The sooner you get diagnosed the better you'll feel!
I used to get the tingling sensation. It would start in my face and travel down my whole body. It would keep me up at night just because it was uncomfortable and "weird". This was before I was diagnosed November 2008 and now I just get it in my feet and hands on occasion. I'm not sure what triggers it because I am extremely careful about not consuming gluten.
I have been having pain in my left groin and armpit, and a low grade fever/night sweats off and on. I am paranoid because I recently read an article about how Celiacs have an increased risk of developing lymphoma. I had a CT scan last week of my pelvic area and they "didn't find anything significant", but that was coming from the medical assistant since the doctor was out over the holidays. Also, not sure they can diagnose lymphoma by a CT scan anyway. At the onset of my symptoms I was told I had a slightly elevated white blood cell count... probably due to stress they said. But the same doctor sent me to therapy because they couldn't find anything wrong with me and thought I had generalized anxiety disorder . Has anyone else had these symptoms or heard of the connection between the 2 diseases (celiac and lymphoma?)
I was overweight when I first started having symptoms and lost 20 pounds in about 6 weeks (the doctors said I was at my ideal weight which made me feel so much better-not!). Since then I've gradually lost another 15 and am very skinny. People that haven't seen me in awhile are shocked and hardly recognize me. I look sickly and my skin is hanging from my bones. Even though my appetite has increased since going gluten free 2 months ago, I can't seem to put any weight back on. I never thought I would be back into my high school size, but I don't like it. I felt much better when I was overweight!
I am just the opposite. I am so tired by 8:30-9:00, I usually just crash after I put my children to bed. But then I'm up at 5:00-5:30 when my stomach starts to rumble. I also have the extreme depression and sometimes feel like I'm dying...seriously. I've only been gluten free for a couple months and I see little improvement. It took doctors (4 of them) 9 months to figure out what was wrong with me. Therapy was suggested because they thought it was all in my head. Now they also think I may have Crohn's (had the colonoscopy last week and should know the results next week). I'm also considering the depressing thought that I may have lymphoma because I have pain in my groin and armpit, as well as tightness in my throat, aching legs, and of course fatigue. I feel your pain and anger! The medical community needs to be more aware of this disease and the possible side effects it can cause. I am only 36 years old and the thought of dying and leaving my 3 young children behind scares the hell out of me.