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
Have any of you had a reaction after eating Udi's Chia and Millet bread? I loved it at first, but had been having symptoms after starting to eat a few slices in a PB sandwich every few days. The store ran out and I couldn't be more glad. My symptoms disappeared. Just curious. Maybe it was something else I was consuming. I was just having bad digestive and joint reactions with this in my diet.
I used to stop myself from being hateful, but when somebody is rude about me eating gluten free, I just tell them I hope they get to experience the kind of pain I experience when I eat gluten. Sometimes I mention explosive diarrhea and excruciating joint pain that kept me awake for nine months.
So what if they think I'm nasty. I think the same of them.
I am actually a violinist and violin teacher by trade, so the tendon issues are a problem. My shoulder pain kept me from playing for a year. Doctors kept blaming it on the violin. I don't think the violin was ever the problem. I think it was malnourishment.
I am hoping to shake it over the next few weeks. The exercises have been keeping it from getting worse. Thanks for all of the replies.
I was planning my wedding and my mother-in-law was insistent upon getting a "glutton" free meal for me with the catered dinner from a barbecue joint in Fredericksburg, TX. No, Thanks! I'll just eat a PB&J on Udi's bread at the meal that will honor me and my new husband. John eventually talked her out of the catered meal. Then they made "gluten free" burgers and veggies on a grill at a B&B instead. (Still didn't eat it because there was gluten all around!) I had to wear a white dress the following day.
A friend of mine offered to make pasta with nothing on it when I visited her home. No, thank you.
I stayed with a woman who insisted on making a gluten free meal for me. It was ham with mashed potatoes and salad. I was thinking it must have been CC from the pan that made me sick. Maybe the ham flavorings. Whatever it was, I was sick for days.
The local "gluten free" place sells items with gluten free oat flour (without disclosing ingredients). If you call yourself a "gluten free" restaurant, please be knowledgeable of the fact that some people can't have oats!!!!!
More recently, I have come to dislike being at events and folks blessing food that I can't eat. I hate that. "God bless this pepperoni pizza." I don't believe in blessing food that will not sustain everyone around.
Every time I eat out is a gamble. I get sick most of the time. Most people don't understand that.
Last Friday, I suspect I ingested gluten some time that afternoon (although I'm not sure from what). I handled dog treats given to me by the bank and didn't wash my hands afterward. I think I had a snack just a bit later. I spent the dinner hour that night on the toilet (and had no appetite). The following day, I was dizzy and "hung over" feeling. On Sunday and Monday, I was also feeling extra tired. On Tuesday, my hand started hurting in the same place I had a tendon issue before Christmas. (I had taken an antibiotic that apparently can give folks tendonitis. Leave it to me to get tendonitis!)
I use my hands hours and hours a day for work. It's not uncommon for folks in my field to get tendon injuries. However, I feel like my issues resolve when I'm all the way gluten free. When I gave up gluten, I was battling joint pain in my shoulder and neck. It would come back when I got gluten. It seems to have completely resolved at this point.
I am diligently doing PT exercises to heal my hand again. I am taking vitamins. I am eating a very bland gluten free diet until I feel like I've shaken whatever got me.
Has anyone else had recurring tendon problems after gluten ingestion?
I am considering giving up dairy and soy, but I don't want to if I don't have to. (I find it hard to get enough calories otherwise.)
I have been gluten free for more than 18 months. I have never intentionally ingested gluten since I quit.
When I got very ill, it manifest as pain in my shoulder and as terrible stomach pain and gas. My doctor thought I had a parasite so gave me Flagyl (without having done a test for parasites). I got better on it, probably because it killed off the overgrowth of bacteria. Once I was off it it, I got even worse. The doctor put me on 21 days of it and I got better, then worse again off of it.
Turns out, we figured out I was gluten intolerant after numerous visits to the doctor. After about 3 weeks of being gluten free I was much better. The joint problem in my shoulder took about 8 months to heal. I have been gluten free for about nine months and have never felt better.
Best of luck to you newcomers. It's difficult, but worth it if you need it.
I still get mystery glutenings. I have found most of the culprits. Sometimes I think feeding my dogs their food might do it. I can't figure it out. I eat very strictly. I think sometimes foods that are labeled gluten free are not actually 100 percent of the time. Maybe one day packaging that says gluten free will mean something. I used to try to eat at a gluten free place that used oats. I found out even gluten free oats were bad for me.
I don't eat at restaurants. Even well intentioned folks don't have any idea of how bad this is. We are space aliens. I was in physical pain the last four times (in the last six months) that I have eaten at restaurants. It's not worth it. At the last place, the chef came out to speak to me and I still got glutened.
I have folks make me food gifts all the time (because I'm a teacher). I just take them and throw them away. You never know if the food is contaminated. It affects my livelihood, so I don't mess with gluten.
I have not been here a long time, but I have been here long enough to get better.
All my life I struggled with this mystery, but didn't know what it was. I had seizures, dizzy spells, anemia, lethargy, skin rashes, sore throats, acid reflux, ulcers, bowel problems, the works.
About 1 year ago, it reached the point that I got pain in my shoulder and neck I thought I was going to die. I couldn't sleep. I hurt so badly that I couldn't even lay on either side (or my back) without being in excruciating pain. My posture changed. I moved like a 90 year old woman. I hurt so badly and no doctor could figure it out. I did physical therapy, but kept getting worse. I took Naprelen daily, but it seemed to get worse. My stomach hurt. My neck and shoulder hurt. I ly my job teaching orchestra at a public school because I couldn't do it anymore. I couldn't raise my arm above my shoulder.
It was do or die as I was starting a new job. I didn't know what I would do. Doctor after doctor came back with nothing. One of them finally told me, "maybe it's something you're eating." That night, I had a dream, I went online and looked up the word "seliac" that I heard in my dream. Google corrected my spelling and I started doing research.
A rheumatologist tested my IGg, but it came back normal. He decided to put me on the gluten free diet anyway. It changed my life. I haven't been back to a doctor since.
Within one week, my neck pain was relieved to the point I could sleep again. A string of symptoms started to disappear. I don't remember what order they left, but I no longer had:
gas, loose stools, stomach ache, nausea, inability to eat, odd body odor, pain in my shoulder, shoulder impingement, neck pain, pain in my hips, pain in my elbows, swelling in my joints, etc.
Eventually, I found out that I couldn't tolerate oatmeal (even the gluten free kind). And I started to eliminate some more things I initially thought were gluten free. I live very strict on the diet. I don't eat at restaurants because I don't trust them. I don't cheat. Six months. And I'm better. Life is worth living again.
I occasionally ingest something accidentally. The gas comes and stomach pain come back, followed by some joint pain the following few days. It's completely manageable at this point. Never the excruciating pain like it was before.
It took about six months for it all to really get to where I didn't have daily pain. But I got there, you can too.
A designated gluten free kitchen and bakery have opened in my town. I was so excited because I can't seem to eat anywhere and trust that the food is safe. I was given a gift of some beautiful granola from the place and as I went to grab my first handful, I realized that it had oats in it.
I have had the Bob's Red Mill Gluten Free oats in the past and they caused a flare up so bad that my neck and shoulder were immobilized again from the pain. They also gave me gas and bloating and other stomach issues. That was the only thing I changed. I am convinced it was from the oats.
I don't think it's fair that they are deciding that their bakery is gluten free and they don't even realize some people are sensitive to oats, too. I have had cookies there and had horrible stomach pains from them.
Since being gluten free, I have gotten my life back. There is no way I would risk it for a cookie if I had known they had oats in them.
I think this is irresponsible, but maybe just on my part. Please watch where you go and what you eat. Even well-meaning people can cause you harm.
I don't think many doctors think professional violin playing is much of a livelihood. I had many tell me that I must have just overdone it playing the violin. It was a horrible kind of pain that couldn't have come from playing the violin. And it got better only when I gave up gluten. (Not when I gave up the violin.) I am convinced that the gluten free diet is the answer for me. I really can't gamble on going to a doctor at this point unless it's an emergency because my coverage from my old job ended and I was denied coverage at normal rates. I can't afford $500 a month for coverage. I'd rather go without. I hope I don't have any other health dilemmas for a while.
Thanks for the info. I actually had some vitamin deficiency on my last round of tests before going gluten free.
I can't even get health insurance that I can afford right now because I had "idiopathic" neck and shoulder pain. Several companies turned me down. The high risk pool is too expensive. I was told by the rheumatologist I was possibly "gluten intolerant."
I basically lost my public school teaching job over this illness. The fact that I didn't look sick made it even worse because my boss was not understanding at all. I never realized that something like this could cause that kind of pain. I was going to give up playing the violin and teaching because the doctors kept telling me I just overdid it playing. (By the way, I'm back to practicing 2 hours a day and teaching or rehearsing for up to 6 hours a day.) I attribute all of the shoulder and neck pain to the gluten intolerance. I think I was just malnourished and had some auto-immune responses going on in the shoulder that caused my tendons to be weak.
I have been diligent about following the gluten free diet. I don't think many people could be better at it than I have been. I don't eat at restaurants. I am very good about screening labels and consuming low ingredient foods. I have discipline.
Everything I do was at stake because of this illness. I am very glad to follow a completely gluten free diet. I don't cheat myself by eating foods with gluten. My livelihood depends on it. I didn't think I needed to pursue a diagnosis, but I will be careful about the vitamin deficiency.