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
Hi Lemonade, sorry you didn't get the results you were hoping for - I know how disappointing that is. It might be a good idea to get the blood tests rechecked at a later stage if you don't find out anything definite. I had been tested (blood test) in early 2004 (although I didn't know until later) & it came back normal, and later in 2005 I had 2/3 levels positive. I'm still without diagnosis but I'm going to try a gluten-free diet and hope I feel better. Hope the enterolab is more helpful
I had an appointment with my doctor yesterday, I have to say she did seem alot more helpful - I was worried about asking if I could get the celiac blood test done again - but she actually said it would be worth doing & I also asked if this was something that should be checked on every now & then, and she thought it would be a good idea to get it checked twice a year.
My other tests were pretty much normal, I don't have a carry-over from glandular fever which is what I had thought so that doesn't explain the tiredness or weakness.
I'm going to try a gluten-free diet for a few months and see how I go.
Thanks for the link Holly, I'll definitely join & good luck with your endoscopy
I have wondered whether maybe I am just in the early stages and that's why I'm having problems with a diagnosis. When it first started I had really severe symptoms, and after awhile my symptoms were still bad but seemed to kind of level out - or maybe I just got more used to it. There seems to be alot of emphasis on having the positive Tissue transglutaminase (sp?) levels in the blood test and a positive biopsy and I wonder if this is causing people to be misdiagnosed because they're just in the onset stages of celiac's and enough time hasn't passed for the stomach to be in bad enough shape yet.
My specialist wrote that he had taken 'lots' of samples in case (despite normal endoscopy) - though I'm not sure how many 'lots' is, I know when I had my appointment he said the standard now was to take about 6 samples. The strange thing is my doctor gave me a printout of the test report, and it says (I've cut a few things out)...
Two mucosal biopsies received 4 and 3mm respectively. All embedded.
The sections show two fragments of small bowel mucosa which show normal villous and crypt morphology ...etc.
Summary: Biopsy, Duodenum
Normal Small Bowel Mucosa
I'm not sure if this means only two samples were taken? I know afterwards he told me there was alot of activity in my small intestine, that it kept pushing the endoscope back up, but hadn't said anything about only being able to take two samples.
I think I will be going gluten-free, or at least trying a gluten-free diet and seeing if that makes a difference for me.
Biopsy came back negative, my doctor said that Celiac's is now ruled out - I asked her about having positive bloodwork, did that mean that I was having some sort of reaction to Gluten? I didn't really follow what she was saying, she seems to think that I am just weak and tired from having Glandular Fever a few months ago. She didn't recommended going on a Gluten Free diet because she thinks I'm likely to lose more weight by doing that, I'm 175cm tall and weigh 54 kilos now, I was 68 kgs at the end of 2003 when it first happened. She said my weight loss could just be related to metabolism. I'm having further blood tests done and will know if anything is abnormal next week, other than that she said if I wanted a second opinion she can refer me to another doctor.
Hope you had better luck than me Lemonade & thanks Lynne, I will probably get in touch because I'm a bit lost at the moment and not sure where to go from here so advice would be great
I had an endoscopy done yesterday and the specialist told me it was normal. I really couldn't find out anything else, other than there was alot of activity in my small intestine.
I'm worried because although I'm still waiting for the biopsy results (which will probably be in on Thursday/Friday), if there was no 'visual' evidence of damage then wouldn't it be unlikely that the biopsy would show any damage?
Is the flattening of the stomach villi something that can be seen with the endoscopy or only biopsy?
I'm just so disappointed right now and not sure what to do. I've been sick since late 2003 and after I had a blood test in September which showed 2/3 positive tests for Celiac's (Anti Gliadin IgA and Anti Gliadin IgG) I really felt sure that this was what was wrong with me, all the typical symptoms seemed to be exactly what I had been going through.
I'm not sure if this is any help but some of the things you mentioned in the report sounded like mine, I first had an endoscopy in 2003 -- basically my doctor told me it was inflammation and the specialist wrote impression: 'body gastritis'.
I had actually been tested for Celiac's Disease but had a negative blood test result, at that stage I was not eating much at all and was seeing a Chinese herbalist - at this stage I had no idea what Celiac's was.
Anyway, two years later I had a blood test while I was sick with Glandular Fever and it came back with positive results for Celiac's Disease and I am now having a second endoscopy in late April to confirm.
My specialist told me they're now testing further down the stomach than they used to previously (when I had my first endoscopy in 2004) and standard is to take about 6 samples now apparently. I think he also said something about onset occurring further down the small intestine where damage may not be evident higher up??
I'm really new to this myself but I think it's a good idea not to count Celiac's out yet, it seems like alot of people have similar experiences of negative results only to be diagnosed at a later stage.
I'm a 22 year old from Australia, I've been reading this message board for a few months now. I've had stomach problems since late 2003, I had been quite bad for a few months and had gone to my doctor so many times but with no real diagnosis or positive outcome. I recently came down with Glandular Fever in September last year and had a few blood tests carried out. My iron levels were low and I think a further test was conducted, my doctor told me I had a positive result for Celiac's Disease and referred me to a specialist who I have just seen this week.
I hadn't seen my test results until my specialist appointment. Two of my levels were positive (although one was only slightly so) and another was negative. My levels in order were 200 (which he said was quite high, and I think this was for tissue transglutamide?? Not sure of the name - but it was supposed to be between 0 and 19 I think), my second level was 21 (where normal was 0 - 19/20) and my last level was within the normal range, a 5.
Does this sound indicative of Celiac's? I'm also wondering if my results could have been affected by the Glandular Fever at all, I hadn't been eating properly for a few weeks and when I was having blood tests I was really only eating jelly and icecream.
Also, the specialist said that there was something called Tropic Sprue that is seen in people who have lived overseas? He thought this was unlikely as I had lived overseas for two years, but I was 6 & 7 years old so it was a long time ago.
I'm booked in for an endoscopy on April 24th, any advice would be greatly appreciated. I'm also interested to know about people with similar results (positive & negative) and their outcomes after endoscopy.