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 hope I'm posting correctly, this is my first time on this forum. The topic of Health Valley soups caught my eye. I have been on the gluten-free diet for about a year and a half now, but I'm starting to wonder if I'm doing it completely, so I'm on here trying to learn more. I have been eating the Health Valley Organic Vegetable Soup. There aren't any ingredients listed that should have gluten, and I've been able to eat it with no problems, so I thought I had a winner. But I ate it last night and was in the bathroom till 3 am with diarrhea. So I called the company today and the rep said that although there are no ingredients listed that should have gluten, it's not listed in their files as gluten-free because it's manufactured in a facility that also makes foods that contain gluten. So now I have to scratch that off my safe list.
I'm getting kind of discouraged. I saw the GI Dr. to find out why I'm still having a lot of symptoms, even though they are much better than before. I think it has to do with what I'm eating, but his first move was to put me on an anti-inflammatory medication. I'm pretty sure that it's related to what I'm eating and the medicine made me sick, so I'm not taking it. Besides, I want to find out what's causing the symptoms, not just mask them. Anyone have any suggestions? Thanks a lot.
Hang in there! It can be really discouraging in the beginning, but it gets better. It could be that you just haven't had enough time to heal yet, but there might be some other type of food that is causing you to feel bad. I was having the same kinds of symtoms you mentioned and they are much better most of the time now.
Soy is one thing to look at. A woman at the Celiac Foundation told me that a lot of Celiacs have trouble with it. A lot of those problems went away when I eliminated it. But I've been gluten free for about 2 months now and I've notice that I can tolerate foods that have small amounts of soybean oil or other forms of soy, such as gluten free tortilla chips. I'm not ready to eat a large amount, such as a portion of tofu, yet, but I'm encouraged and hopeful that as time goes on I will be able to tolerate more. There may be things that only bother you because of the damage done by celiac disease, that you may be able to eliminate for a while and re-introduce after a period of healing.
I'm not sure about the vegan diet, but do you eat dairy? Before I went on the Gluten-Free Diet, I was lactose intolerant. But since I have been gluten-free, I've started eating yogurt, as long as it's gluten-free, and been tolerating it really well. Eggs are another thing that can cause problems. If the problems keep happening, you might want to be tested for food allergies. It helped me a lot to get that information.
As Lauradawn mentioned, you might be getting hidden gluten from somewhere, which would be sabotaging all your efforts. Try checking out the lists of names gluten hides as: modified food starch, vegetable protein, etc. And I've had good results from calling the company about prducts I'm not sure about, to ask them if it is gluten-free. Good luck and keep talking to people on these lists. The answers will come.
I picked up on the steak you mentioned. For some reason, I can eat ground beef, if it's very lean and good quality. But I gave up trying to eat steak a long time ago. It always goes right through me. I don't know if it's the fat content or hormones they use or what, but even if I don't put anything on it, I can't digest it. For myself, if something is going to make me sick, it usually happens pretty quickly, so I would look much closer at what I had just eaten, rather than what I had 8 hours ago. But we're all different, so each person has to figure out their own system.
I am reading a book I heard about on this message board, "Breaking the Vicious Cycle" by Elaine Gottschall. It uses a method called the Specific Carbohydrate Diet in treatment of Celiac Disease, among a lot of other digestive disorders. I'm very excited, because I can relate to a lot of what the book talks about and am hoping that I will get more relief from it. I'll post any results I find. I'm so glad o have found this forum, it has been a real life saver.
By your question, does that mean that most jelly beans are not gluten free? I love the Just Born Peeps, and I've been reading labels like crazy. What would be the ingredient in jelly beans that would have gluten? Thanks!
In reading the comments here about cysts and tumors, it makes me wonder about my husband. He has rheumatoid arthritis and finally agreed to be screened for celiac disease because of all I have read about there being a connection. But he's waiting a couple of months, till his next regular checkup, because he really doesn't believe he has celiac disease and is just placating me. But he has had terrible subcutaneous cysts behind his ears for years. They come to a head and when they pop, the smell is terrible. Has anyone ever heard of these cysts as a symptom of celiac disease? Thanks,
The doctors never did recognize what was wrong with me. I had to do the research myself, much as you are doing. Finally, I found a GI doctor on this website who was experienced in celiac disease and I had him do the biopsy myself. I don't have insurance, so I paid the approximately $2500 myself on my credit card. I'm really glad I did, because I would have just gotten sicker and sicker and then had the cascade effect of all the other diseases that are able to come in on the coattails of undiagnosed celiac disease.
In my opinion, a doctor who is too rushed to give you the right amount of time or too know-it-all to listen is a bad investment. Much of the info available on celiac disease now is very new. Unless a doctor is really keeping up on the latest details, they probably wouldn't know what they needed to diagnose you. The thing about celiac disease is that you can have it and have very atypical symptoms, or no symptoms at all and still have it in there, doing the damage. The blatant symptoms come when all the damage is done. Trust yourself and keep going! Good luck!
I'm a professional wallpaper hanger who was diagnosed with celiac disease in Feb. My GI doctor mentioned that since many wallpaper pastes contain gluten, I may have to think about a career change. He said that it was possible that contamination could possibly occur through the skin. Does anyone out there have any info on this? Thanks
I never have the hygenist polish my teeth because it bothers my gums, but I hadn't even thought about the polish containing gluten. Are there products that the dentist would use in doing fillings or other work that I need to watch out for? How can I find out exactly which products to talk to him about? Thanks
Rheumatoid Arthritis (RA) is an autoimmune disease which has been indicated as having a possible/probable link to celiac disease in just about every medical article I have read.
RA is a crippling disease that causes extreme pain to the sufferer and often progresses from the pain to deforming the hands and feet. There is no cure yet, but people who are newly diagnosed, such as my husband, are now being treated aggressively with immune system suppressants, which help to keep the body from destroying itself, but in the process keep it from protecting itself. If you are in that kind of pain, I would highly recommend that you see a rheumatologist immediately. They can test with a blood test and get you treated as soon as possible. If you do have RA, delay can really cause major problems. A friend of my husband's died recently at the age of 33 because it had gone into her heart, and we have friends who are in and out of the hospital all the time. This is nothing to fool around with.
Even if you don't have RA, there's obviously something very wrong. People are not supposed to be in that kind of pain. My husband was misdiagnosed for years, carpal tunnel, tendinitis, etc. He was living on handfuls of aspirin and Ibuprofin. From your signature, I can see that you have taken your health very seriously. You have eliminated all of these problem foods from your diet, which is really hard to do, so you are obviously not a nut. If your doctor treats you like a hypochondriac, I would find another doctor fast and don't look back. If you would like me to send you some articles to show your doctor, feel free to email me privately and I would be happy to do that. firstname.lastname@example.org. Best of luck!
I'm new to this forum, so please excuse and correct any mistake in protocol. Thanks.
I finally found my celiac disease by reading "Dangerous Grains". My symptoms were not classic, but I've had all kind of GI problems all my life, and the confusion/depression kind of stuff. None of the doctors could spot it.
Anyway, after I finally got a diagnosis, I did a lot of research and kept coming up with a link, although infrequent, between celiac disease and Rheumatoid Arthritis (RA), which my husband has. He didn't think he had celiac disease because he doesn't have GI symptoms and doesn't understand that you can have celiac disease and have some very atypical symptoms, or no symptoms at all. I got him to ask his rheumatologist about it, but the rheumatologist just poo-pooed it and I got the feeling the he was giving my husband the standard "tell her not to worry her pretty little head about these complicated medical things" line, which was the attitude he had when I met him on one of my husband's visits. That was the same attitude I got from many of the other doctors when I was trying to get my own diagnosis. If I hadn't finally fought my way through all the people who didn't know what they were talking about and paid for the blood tests and biopsy myself, I still wouldn't have my own diagnosis. Getting my own diagnosis gave me a tremendous boost in self-confidence. Now I know that I can trust my own research.
I still wanted my husband to be tested. So I got all kind of articles from Reader's Digest, Woman's Day Magazine, and a bunch of GI doctors and the Celiac Foundation. I also included a handout from the Celiac Foundation called "10 things doctors may want to know" or something like that, which talks about how often celiac disease is misdiagnosed because doctors aren't trained to look for it, and circled that part. I had a whole stack of stuff. I left each article open to the page that referenced RA and circled the reference. I wanted to make it as easy as possible for him to scan and get the pertinent info in 30 seconds or less, which is about the length of time I thought the doctor would devote to looking at the stack of articles.
Then I got my husband to bring it to his doctor on his regular visit, which I think he did just to shut me up. (;>). But I didn't care why, I just wanted him to be tested. It worked, I think I embarrassed the doctor into doing it, because he gave my husband the orders and he will be tested during his next blood test. The doctor told him that he doesn't have celiac disease, but that's what kills me. He can't know that without at least screening for it in a blood test and even then, he may not be able to tell. The doctor is just convinced that he would be able to tell. I'm sure it's because my husband doesn't have the classical GI symptoms. Whatever the reason, I'm just hoping that he does have celiac disease, because I really believe that there is a connection and that the GFD will help him. Keep your fingers crossed for me. I will post on here if it turns out to be right. Thanks so much for this forum. As I've said, I'm new here and newly diagnosed, but so happy to have gotten diagnosed and on a GFD. I've been sick for so long and things are getting better every day.
I'm new to this forum, too. I was just diagnosed in Feb '04, although I've been sick all my life.
I have a wonderful doctor, Jeffrey Aron, in San Francisco. I got him from the list on this website. He specializes in celiac disease and was the speaker at the Celiac Foundation meeting in Oakland earlier this month. If you have any other questions about him, you're welcome to email me at: email@example.com. Good luck!
I'm new to this forum, so please excuse and correct any incorrect behaviors. Thanks.
Congratulations on your good fortune. I had that testing done about 6 years ago, in my search for an answer. It was interesting, but since I have celiac disease, it didn't fix the problem. My only observation on all of these other treatments is that I am hoping that with all the new info available on celiac disease, that screening for it will become routine, as it is in Europe. Allergy tests, antidepressants and a lot of other treatments are great when they are the correct treatment. But I think a lot of celiac disease patients will be able to eliminate years of trial and error and pain by cutting to the chase and finding out what their bottom line problem is so that they can take care of that first and then see what remains after embarking on a GFD. So relieved to be GFD!
I'm new to this forum, so please excuse and correct any wrong behavior.
I had become convince I had celiac disease by reading "Dangerous Grains", so I got the name of a GI doctor in San Francisco from the list on this website. He was great and did the endoscopy and biopsy, which was positive. However, he said that he spends a lot of his time training other doctors and labs in how to read the biopsy reports, because they commonly misdiagnose if they haven't been really trained to spot celiac disease. As a matter of fact, I got a copy of the biopsy report (I always try to get copies of all my tests), and it said that based on the percentages, it was negative for celiac disease. But my GI had written on there that my score was actually high enough to indicate celiac disease. Now, how many other doctors, who don't specialize in celiac disease, would have just read the report and sent the patient to a psychiatrist (which happened to me)?
I got the wrong diagnosis from about 20 different doctors for 51 years, but then, most of this info is brand-new, and I didn't have the classic symptoms. When I was a kid, in 1966, I worked as an aide in nursing homes. I remember a poor old woman who I now believe must have had celiac disease. Every time she ate, it went right through her, immediately. It was just awful. Besides the pain and being sick all the time, she was just humiliated and so apologetic every time. If I have to have a disease, this is the one to have. All I have to do is watch what I eat and I can have a normal life. I'm really amazed because I have been sick for so long. I'm so glad to have found this message board, I was feeling pretty isolated before this. Thanks!
I'm new to this forum, so please forgive me if I'm not doing it right, and I welcome any constructive criticism.
I was diagnosed with celiac disease in Feb, but I've been working on these diet issues for a long time. So the gluten was the missing link in my trial and error experiments. I'm feeling so much better since I got on the GFD, but I had already found most of the other problem foods through elimination trials for food allergies. A couple of things in Jojes post that stood out for me were: 1) ratatouille; I can't tolerate zucchini or other squash at all, and the onions would bother me too. 2) soy; I used to love Chinese food and could tolerate it well, but now any soy at all (soy, tofu, MSG, etc.) sends me to the bathroom with horrible bouts of violent cramps and diarrhea that last until all of it is entirely out of my system. I have to read labels very carefully for this as well as gluten ingredients. The Thai soup probably contains some MSG or soy, as well as the soy peanut butter.
Good luck and I'm so happy to have found this message board. I was feeling pretty isolated, so you guys are a Godsend!