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 would love all the prayer I can get. I am religious, but being in such an up hill battle still leaves me blind to why I'm going through this. It's been difficult to be self assured in my faith when feeling like every step forward brings you two or three steps back.
Iappreciate you opinion, and I also believe there is something else wrong. Trying to get a doctor to believe me has been an on going battle of 3 years now.
But I still my hope is there, I just pray it becomes a reality.
I hate to put a damper on things, but your symptoms may take a lot longer to go away. I've been doing it for two and a half years and I have never improved on the diet. Although to give you a boost, i'm the only one that I've heard not been helped on the diet. Give it time, and try to be patient.
Did you get rid of all your old pots and pans? even cleaning with soap can still leave gluten imbeded in the surface of them. New spatullas everything...go all the way if you can. With the celiac diet I find you do go hungry a lot. There is a lot less fiber and carb that feel like they take up room in your body. You'll get used to that I guess.
As to labels, one of the things that caught you might be sensative to are additives. For some reason celiace get more sensative to food...especially a lot of the chemicals they use to preserve them. Just a suggestion..maybe try to elliminate a few to see.
I hope things get better. I swear everything is a test of patience, but I believe you will be benefitted.
Yes I did go gluten free in those two years of being on the diet. Compeltely gluten free! I was anal about it. I know all about the crumbs, surfaces of foods. My family and I have worked in many food industry places, I've had lots of experience. When I moved into my house, no gluten was allowed in, and since then I've been very very careful. So I'm sure I've been gluten free to the utmost of my ability. At least I like to think so.
I don't bleive i was damaged when I was initially diagnosed..becasue they said I was just begining to show damage..and that I was very mild. Even though I had severe symptoms, the doctor said that there was barely any damage showing. Unfortunately my symptoms got worse on the diet after the first year. There was none in the slightest bit of improvment.
I've been to naturopathic doctors that do the diet cut out foods thing, to no avail. I ate rice for weeks..just rice.and still had so many problems. I cut out dairy so many times now I can't count and still there is no difference. I've gone as far as cutting fruit out, cooking fruit, cooking veggies to mush etc. I don't like soy products so I don't usualy eat them..so I can eliminate that as a problem.
I've got the naturopathic doctor to sya that there is nothing he can do for me.
I'm so frustrated, becasue whether I eat rice or eat a hamberger it's all the same. The same results, the same pain, the same spasms, the same number of times going to the bathroom.
Is there no one else like me out there?
I swear it's hard to think that you can do everything right and have no positive results. Physically when scoping i've never shown a lot of damage, then why are my symptoms so drastically bad? The doctors can't answer me. I've done all the IBS drugs up to narcotics..and even those don't work. I've even done dygestive enzymes, message therapy for my stomach, rieke etc. I've delt with increasing fiber, imobilizing my bowels, supplementing diets etc. Nothing has made the slightest bit of difference besides causing more cramps.
Thank you all for all your posts. I appreciate it.
I'm a 22 year old woman in her 5 year of university. Here is my problem:
I was diagnosed at 20 with celiac's disease. I had been sick with diarrhea and cramps, bloating, constant running to the bathroom, no relief with evacuation and sever gas for over 2 years at that point. A GI specialist sent me to get the blood test where i came out half "positive" and half negative. I was then biopsied and told that there is "mild" damage to the villi. I changed all my eating habits..cut out all wheat and was supremely stict with my diet to find out that my symptoms only got worse. I had never benefited from the diet. I went to doctors and asked them why am I not getting better? They all just said maybe you just need to be on it longer. They wouldn't even give me consideration that something else might be wrong with me. At this point..I was home bound becasue my symptoms were so painful and uncontrollable. Two years go buy on the stict diet..and I run back to my doctor begging that he listen to me and that the diet isn't working. He finally concedes that I might have had a misdiagnosis, so he puts me back on wheat for 6 weeks for another biopsy. I had taken the celiac blood test a few months before that and came out really really negative. So negative it was a 1.6 when four and under is negative. So I go back on wheat and enjoy a sandwich for the first time in two year!! It was quite gratifying. I was expecting to be terribly ill. I thought that it would knock me out of commission for quite some time, but the contrary happened. Iwas fine. There was absolutely no chang in my symptoms, the number of times i had to go to the bathroom, the out of controlable bowels. Nothing changes so at this point I"m almost positive that I don't have celiac's disease. I go in for the biopsies which included a sigmoidoscopy and a gastroscapy. He biopsies me in 6 places and finds that I am swollen through out. I'm labeled something like "mild duodenitis and mild colitis." I'm told that swelling can be a sign of celiac's but I don't know. The villi wern't damaged..but my duodenum had "chronic innflamation." I go back to the doctor about the results and he wants to do the blood test on me one more time. I wait 2 weeks for the simple results to find out that the test is now positive. BUT my symptoms have not changed.
My questions are... I've seen documents from doctors saying that the real proof that you have celiac's disease is not in the biopsy and blood test but weather or not you improve on the diet. Since I have not improved even remotely....doesn't that mean I still have it? And can you just go off being inflamed as physical proof that you have the disease when the villi are not laying down..but are stull up?
Can you have A-sumptomatic celiacs disease? Can you have the disease even though the diet doesn't help it? has this happened to anyone else????
Please, let me know. Iwould much appreciate it.
Ah yes...trying to control IBS. I'm sorry to say that no doctors have been able to even romotely help. I was once put on a narcautic to calm my intestines down..and all it did was take me out of my mind, and i was still sick. I just have to tell you that the side effects of those drugs can sometimes be worse than their help, but if it is something that actually makes a difference then it might be something you want to consider, as long as it is the lesser evil (if you know what i mean) As to the other thing...I run to the bathroom all the time..and as much as I've tried all the bulking agents allowed for celiacs ..so far I have found one that has sorta worked. I just started it ...so I'm still learning as I go. It is called SPR-CLNS, it is all natural and is a fiber blend. It is from a company called Vitamost in canada. The ingredients are Psyllium Husks, cellulose, pectin, pepper-mint leaf, lactobacillus acidophilus, garlic, guar gum, papya, dandelion root, red respberry leaf, magnesium stearate, elder bark, red clover leaf, ginger root, bachu leaf, burdock root, yellow dock root, rhubarb root, cinnamon bark, barberrybark, plantain leaf and gelatin. This is something that might help relax the spasaming intestines too cause if you intestines don't have to work so hard to grip what is inside them, and pull it through, then essentially the spasamings will slow and regulate. That is the theory and it makes sense to me, But I am still waiting for the full results. Anyhow, again I am just starting it, and right away I notice a difference. I can't say that it is all good, cause my body is not used to have fiber...at least not much of it..so I am slowing working my way onto a normal dosage. I noticed right away when I started with two capsules that my stomach cramped up and was very upset, but on just one ...I am much more comfortable. ideally, you should take three a morning..and this will give you your required 25-35g of fiber a day wich is really needed by celiacs. Drink a lot of water, and adjust to having something in you intestines, and it seem promising. I know that it has helped quite a few people with IBS and I know two other celiacs who are on it, that like it. Again...all natural, nothing that will cause your body to hate you later in life.
I live in Edmonton Alberta, but I have to tell you to find a G.I. doctor that might be involved with the celiac association of canada. I personally have not found a good doctor around here, I've seen two and they were really harsh, mean, and uncaring. But none the less, I'm sure that if you wrote the celiace association of canada a suggestion for a doctor, they might be able to help.
Anxiety might be the cause, but it doesn't hurt to check out celiac. I got celiac disease from my mothers half brother...so even though he's distant it is totally possible. Since it is your sister...the blood test is a good idea. I turned out half positive and half negative to the test...so they weren't initially sure if I had celiac, but with the biopsy it did show damage.
You do have a lot of symptoms that I have with celiac disease..and I even have IBS. So all aspects are worth checking out. Once you start feeling better, that might help with the sleeping problems.
Well with you being positive with the blood test is a really good sign I would say about celiac disease. I myself was a half positive and half negative for the blood test and when I did get the biopsy done..It did turn out that I am celiac. Although I still have a lot of problems with digestion and I mainly am running to the bathroom every second it feels.
I just want to warn you that when you do go on the gluten-free diet after you have the proof that you are celiac that the symptoms might not go away for a while. Some people have instant relief...that withing a week they notice a difference in thier systems...then there are people like me..that it's been almost two years and only now am I starting to notice a difference being gluten free. The point is not to tell you that you're going to be sick for years yet...but to tell you that YOU WILL FEEL BETTER. One way or the other some relief will come if you are celiac and you go on the diet. I have IBS as well...or so I am told..and I've been to a few doctors who don't know what is wrong with me other than celiac. What I find really relieves a lot of gas cramps is phasyme ... and then I also take digestive enzymes. HUGE HELP when it comes to all foods. you can get all sorts of enzymes, but all are natural and all will help in some way or the other.
I hope my information helps.
Good luck with the testing.... Gluten free can suck a lot at first..but when you start feeling better, it makes it all worth it. I say this ..even though I am not even close to be a normal person..but any improvment is a great sign.
I have the IBS diagnosis as well, but i was diagnosed early on with celiac too. I guess I got a little lucky, but I have not found any relief from my symptoms even being on the diet for almost two years. There is the possibility that yes your husband does in fact have IBS and celiac. Both which are great to know.
The one thing with IBS is it's sort of the doctors guess at what is there ... They throw the IBS term around when they really don't know what is wrong with the person.... food allergies, or sensativities is a big one. I know right now greecy foods aren't friendly to my system...but that doesn't stop the constant spazaming. Hope you have much better luck with the diet. I do notice a difference when I ingest wheat..and anything that makes a difference is well worth trying.
I was just wondering if there is brand that has gluten free beef soup base. Really I need to make a beef dip for prime rib, and I was wondering a brand that didn't use maltodextrose.
Oh, this brings me to another question...maltedextrose and maltodextrose...is there any difference? And are they gluten free. I was told once that maltedextrose was, but I am not sure. Is it not from wheat?
I live in Edmonton. Unfortunately I haven't found many restaurants that actually have gluten free food other than a salad. I have been to Chianti's, and they do have a spegetti that is very nice, but when there is only litterally one thing to eat there next to a salad, it's still a little depressing.
I find that most restaurants here in Edmonton are very unreliable in regaurds to gluten free. They might know what wheat "allergy" is, but they have no idea abouti ngredients, or even the cross contamination factor. Most line cooks have not been trained with that sort of knowledge. I am a cook myself, and sometimes I wish I could just sit down with some cooks, and just give then some basic knowledge for the next time they meet someone with my problem.
I was diagnosed at 19, right before my 20th birthday. It has only been only just a year and a half to no avail in any gastro improvments. But I'm hopeful soon that the gluten free diet will soon start to help more than it is. I find that if I do have wheat I certainly know it...cause I am just that much more exponentially sicker...
When I cook, I love to cook gluten free as well, even to my family who is definitely attached to everything bread. Usually there isn't a big difference in texture and taste, so they don't seem to mind.
anyhow, if you are every in edmotnon area, I do know some great little lunch places..sushi joints, and some chineese restaurants that do have some great food.
Not a lot, but some good chicken fried rice.
Thank you so much for your opinions. I did not expect such fast answers. I pretty much was the understanding that it was hopeless to really be gluten free anywhere in a restaurants kitchen...but I just thought I might ask.
just a little while ago my in-laws said they found a place where they cater to gluten-free cooking. Essentially it was just a stir fry joint that had a massive cast iron grill, and you get all your ingredients together and they just heat "cook" them up on the grill. I watched as they used separate spatullas for my food, but to clean the grill all they did was steam it. I watched in horror knowing that I was most likely going to be eating things I really shouldn't. Yet being with my in-laws who have no real idea about this, but try really really hard to relate, and even to understand. I wasn't able to just not eat... fortunately, or maybe it is unfortunately, my symptoms from being diagnosed have not disapeared or really even changed since I've been gluten free, so I wasn't much more sicker than normal in eating there. Still...it was the steam that I was skeptical on, and I knew I had every right to be. Many people that are respectable in the cooking industry in which I work...swear they know about these sort of things... lately I've been realizing that I can trust very very few. Mainly only other celiacs. I'm still trying to understand what gluten fits under in categories. How do you explain it to someone...some call it an enzyme, others I've heard just refer it to physical crumbs....etc. I think of it just as some sort of molecule that I have no real idea what it technically is.
I was essentially hoping that soap would clean all in a home kitchen there just isn't getting rid of food particles. But I've only lived in my apartment gluten free so far, so I'm pretty sure that it's pretty safe.
I work in a kitchen and cook as my part time profession with university. I have been searching for some time looking for what will clean something that has been contaminated with gluten. Specifically I am talking about the grill that I use at work, If I steam it...does the gluten still stay there? Is soap necessary to uncontaminate?
Once something has been contaminated, is there any way to get rid of gluten without using chemicals?
How about a broiler? Does heat or steam effect contamination?
Let me know you have any idea, for I've been really curious. I've been told that just steam will get rid of it, but my doubts are huge.