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
Thanks, Gemini. It all feels so overwhelming again. Thank you for sharing your stories -- it's nice to know I am not alone. I think I need to put some kind of emergency "bag" in my car -- but that will only solve half the issue, if you know what I mean.
I know I just have to keep going, but I guess I am still mourning the loss of eating like a normal person. I really thought I had moved past that. And I am hurt that my friend has not bothered to check on me, let alone send any form of communication. Who does that? I don't think my getting sick deserves a shunning. It's not like I don't already feel like an outcast every time food is involved.
Thank you so much for your encouragement. It has truly brought me comfort.
Well the depression really hit big today. Not sure if it is a symptom of the soy contamination or just from the fact that I am still sick and probably will be for at least 2 weeks, was horribly sick at the restaurant (Linda Blair, Exorcist sick), embarrassed to death because it happened while with my out-of-town friend, or because he left town without responding to my email (nevermind trying to make me feel better about going Linda Blair in front of him).
I know it wasn't my fault, but it's beyond embarrassing. And depressing to think that I can't go out with my friends like a normal person. I'll always be the outcast that can't go, or can't eat. And I'm going to spend the rest of my life afraid to eat unless I'm eating at home.
These are the vitamins that I take. Gluten free, soy free. They don't say soy free, but there is no soy in the ingredients and they don't make me sick. I don't see corn in the ingredients either -- unless there is another name for it I am not aware of.
Gemini, I think you may be right. Now that I can think more clearly, I think it must have been soy because of my violent reaction. I am going to call the manager back today and ask him to check the actual ingredients in what I ate. They probably don't realize that there is soy in mayo and lots of other stuff. And I can't tolerate soy lecithin either. I should have thought of it. I went to Chili's once and they have an allergen menu that lists every allergen and there were only a few things that I could have without both gluten and soy.
I'm not sure if this is the right section for my question.... I have been gluten free since last November. My symptoms before Celiac testing were severe fatigue and muscle weakness, with nausea.
I've been gluten free since November. I struggled a little bit in the beginning until I figured out that I also had developed a soy intolerance.
Last night I went out to a restaurant I haven't been to since going gluten free. They have a gluten free menu and the waiter assured me up and down that they were very careful, blah, blah, blah. My friend also ordered an appetizer off the gluten free menu and we shared our appetizers and he did not get sick.
I started to feel poorly after the appetizers. Didn't eat much of my dinner. And after dinner had to excuse myself twice to go to the ladies room. On the second visit my body exploded.
I've never had such a violent reaction before. It was mortifying. I had an out of town guest with me who got left sitting at the table alone. And then he had to be driven home by someone who threw up in her hair because I couldn't get my hair out of the way fast enough. By the grace of God I was able to drive him back to his hotel and get home before getting violently sick some more. I'm missing work today and slept for about 10 hours (woke up 3 times in between).
I called the restaurant this morning to double check there was no gluten or soy in my meals. There must have been cross-contamination, right?
Is this normal? This is not how I reacted before to gluten or soy.
Thanks Cavernio. That's how I feel about it. I have an out of town friend with Celiac and her pharmacist always helps her with prescriptions.
So far I have done all the footwork myself, but it's not easy. I have several health issues, so I do take a lot of medication and sometimes it takes days for a manufacturer to call me back with the information. Not all manufacturers have live people answer the phone that know the information. And a surprising amount of my medication does contain gluten depending on the manufacturer. I think it should be outlawed in medication.
Right now I'm supposed to be taking an antibiotic for Lyme Disease, but still waiting for the medication from the right manufacturer.
I'm so frustrated at the process of having prescriptions filled. It seems like it's all on me to research online (can't always find information), tell the Pharmacy which manufacturer they have to order from. I have always used Ralph's pharmacy and they couldn't be more clueless about the gluten issue. When they order from the manufacturer that is not their norm, they turn around and charge me their out of pocket costs over my co-pay.
I just spent 45 minutes on the phone with my insurance company -- also completely clueless. Brought me to tears.
Every time I get sick, it takes me almost a week to get a prescription filled. Even when I was in the hospital in December and they wanted to give me some medication, they didn't know whether or not it was gluten free.
Are there any mainstream pharmacies that help people with gluten free prescriptions? It's certainly not Ralphs.