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'm going to keep a posible gluten intolerance in the back of my mind as we try this new diet. I am actually looking to take note what items we are eating say gluten free for future referance. I know my daughter had a soy pudding and a glass of soy smoothie and then had diarrhae a couple hours later. This is going to be a very long process.
I'm going for my endoscopy on may 11. I don't think with my blood work results the doctor is going to want to take a biopsy any more but I havn't asked her yet. I know she is going to be looking for reasons for my heartburn and swallowing problems. I think they are all related.
Thanks again for all your help
PS Do you live in Connecticut? I took my daughter to Dr. Hyams at Chaldrens' satalite office in Avon.
I was reading you post in the other thread. I posted something new so it wasn't lost in all the others.
You mentioned that your son does not have the gene but is gluten intolerant. Has he had any allergy testing to find this out?
I just started the Irritable Bowel Syndrome diet a few days ago. On this I am eating gluten. Not anything that is considered to be insoluble fiber, but wheat non the less. This would only mean that my gluten consumption is lessened. It's to soon to tell if I feel any different. And if I do feel different, is it the reduction in wheat consumption or is it the total change in how I'm eating, (ie: reduction in fats, vegetable skins, whole wheat etc.?)
Here are my blood work results. Non of the numbers are bad.
Anti-Gliadin IgA 0.7 u/ml
Anti-Gliadin IgG 6.2 u/ml
Anti-Endomysial IgA Negative
Anti-Human Tissue Transglutaminase IgA 1.6 u/ml
Total Serum IgA 215 mg/dl
Gene HLA-DQ2/HLA-DQ8 not detected
If there is still a possibility that I have a gluten intolerance but not celiac I would like to find out. Until I read you last post I thought no gene made it cut and dry.
Thank you for all your information
If you are going to have the blood test done do it with prometheus labs in California. They are supposed to be the most accurate in the country. If you order the test as a comprehensive celiac test they will do a gene test if you other results are negative. Then you would atleast know if it is a possibility. My insurance company approved going there because the local labs do not do the gene test. You can call them and they will send you a postage paid kit to send your blood back to them in. 888-423-5227 www.prometheuslabs.com.
I was very impressed with Prometheus. I had my blood drawn on Monday. Airborne Express picked it up at 6:00PM. It was delivered on Tuesday morning, by thursday afternoon my doctor was faxed the results.
My numbers were all low and the HLA DQ2 and 8 genes are NOT present. I was thrilled to hear this.
Marianne, what have you heard as far as them not having figured out all the genes that can cause celiac? I was 100% happy till I read your post. Now I'm just 95% happy. I know more than dairy effect my daughter and myself.
Janine, What do you do for a Hiata hernia and an ulcer? I have my endoscopy on May 11. I guess with my blood results there is no need for the biopsy. I have heartburn almost daily. What kind of pain do you have when you swallow? I don't have pain then but I get kind of a tightening in the side of my neck into my shoulder. I also get that really bad pain in my chest that feels like a heart attack. It goes from my chest and through to my back. Many times when I swallow food gets stuck and takes a minute to work it's way down. This hurts.
I may not have celiac but I have gotten so much information on other problems from this message board that I'm going to keep checking in here.
Thanks everyone for answering me. I needed some positive feed back.
Lisa, did the doctor take your prometheus kit for real? My doctor was in the computer at prometheus but when I told her I wanted to use them she couldn't understand why I didn't want to use quest. I heard that quest doesn't do the test accurately all the time. I hope prometheus does.
If all my daughter and I have is IBS then I'll deal with it, but I'm not ready to lay down and play dead (sort of speak) without a guarentee that it's not celiac. One is an inconvenience and the other is life threatening.
Thank you and I hope everyone feels well,
I just sent my blood work off to Prometheus in California this morning. My doctor is waiting till I get that back to schedule my endoscopy. In all my reseach I am finding out that there is more wrong with me than I originally thought. When she does the endoscopy she is going to check for esophegal problems.
Are swallowing problems common in Celiac? I get very bad pains sometimes almost like a heart attack.
I am really hoping that my blood work comes back positive. It has to be easier to go gluten free than not have an answer to what is wrong with you. I have so many symptoms and I'm getting very confused. I have heard that the blood test isn't always accurate.
I have spent the last two weeks eating more gluten than I normally do. Fortunately my reactions are not a severe as some of you. I get a lot of heart burn but the diarrhea isn't daily.
Sorry this is so long but I needed to speak my nervousness to people who are there. In my daily life I get a lot of the "oh you'll be fine.""take the tests but I doubt that's whats wrong" Sometimes I actually am starting to feel like a hypocondriac (SP?). Then I read the list of sypmtoms and I'm back on track.
Thanks everyone for listening.
I have had dry skin problems for years, tried evey lotion there was. I get cracked bleeding hands for most of the year. It only subsides deep in the summer. A friend sells avon and told me to try something and it worked!! It's called moisture theorpy. I put it on several times a day and heavy at night. I still have a little dry skin but no more crackes. Check with an avon rep to be sure the ingredients are ok for you.
Well, I have my prometheus kit and my authorization number from my insurance company. I can't believe they actually approved it. I can't wait to have my test done. I haven't removed any gluten from my diet yet but I'm going to wait another week to take the test. In this week I'm going to pig out on pasta etc. I just hope the test is accurate.
Thanks for everyones help
Thanks for your information. Half of my battle is seeming to be getting the doctor to call the insurance company. When I spoke with the woman at the insurance company she asked me if there was a local lab that could do this. I told her there is but they don't do it with the same amount of accuracy. I since found out from quest that they don't do the gene panel. I am hoping that this will be my tool to get them to approve it. In the mean time I can't try the gluten free diet because I'll mess up my results.
You must do an awful lot of research. Every section I go in it seems as though you have some really good information. Thank you for all the answers you have given to me all over this board.
I am having a hard time getting my doctor and insurance company together with me on having my blood work done at Prometheus labs in california. I had heard from several people that this was the best lab for this testing.
Does anyone know if Quest is accurate? Quest is covered by my insurance and the other one isn't unless they approve it ahead of time. I don't know if I'm going to fight my insurance company for nothing or should I persue it?
Anyone with a lot of knowledge on the labs please help me. I only want to take the test one time.
I am going to the doctor in a couple of days and wanted to know if when I have my blood work done is there one lab in the country better than another. I had heard that some of them do not do the celiac panel properly and others do a vast quantity of this test, plus the gene test.
Does anyone know where I should have my blood sent. Will a local lab draw the blood and then send it to another lab?
Thanks for the help
Hi Nicole's Mom
sorry for the double answer, I'm very tired doing this research and didn't realize there was a second page to this post.
You said that enterolab sends out their test. Is this for the gene only or do they send out the whole celiac stool panel? If it is the whole panel then can we go directly to this other lab with the sample? I don't like to deal with a middle man when I can go right to the source. My daughters Pediatrician is will to order the test for us. I just need to wait until I go to the doctor and get my blood work back. I need to know if it is neg or pos before I go any farther. I am trying very hard to find something positive written about enterolab. All I have found have been regular people like us on the boards. None of the research I have done has been from any of the medical journals, articles etc.
Does anyone know of some postive proof of the validity of this test?
I'm starting to get confused and think in circles.
Hi Nicole's Mom,
My doesn't get regular sick that often, she had strep twice this school year and now she has a congested cough that she's taking antibiotics for. She gets the diarrhea 2-6 days a week. She doesn't complain much anymore. I think she is naucious and has a bit of an upset stomach daily, I know I do. It has become so common place that unless I think about it I forget.
I don't know what else could cause the IGG to be elevated. I didn't get anywhere with her GI doctor. He said there is a 1% chance she has celiac disease. I don't agree with him yet. Lucky for us I ran all this by her pediatrician, and she is going to look into the enterolab test and order it for her if it sounds legitamate. I am going to go to the doctor on the 30th and hopefully he wont mind that I have already diagnosed myself but need him to fill out the paperwork for the labs.
It's very frustrating because I don't know if we should stay away from gluten or just assume it's only IBS.
Hi Nicoles Mom,
My daughter is always saying she doesn't feel well. As far as doctor visit sick, she has had strep a couple times this winter and is now taking antibiotics for a respitory infection. I don't know yet what else can cause the readings to be high. One of the pediatricians in the group finally seems to be listening to me and has offered to research celiac and the stool test. I'm going to give her a few days before I call and see what she found.
I appreciate all the input it really helps give me more questions to ask my doctors.
Does quest not do the gene test or was it just not ordered?
You say that in Europe they diagnose in three weeks. What tests are they using there? Do they use the Enterolab or is in blood tests. If it is blood tests do you know if they are different than the U S? Or is it that the doctors just believe the patients symptoms and head right for Celiac?