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
Here in Australia most specialists and GP's don't put much faith in the blood tests as i have been told by all of them (the ones i see or have seen) that they are all too inaccurate for a diagnosis. I have also read with regards to the biopsy, in Australia they now view no villi damage BUT hight lymphocyte levels as early celiac disease. The basis being while there are some other things that cause villi blunting, none of them cause BOTH villi blunting and high lymphocyte levels other than celiac.
Just in my family there are 4 biopsy diagnosed celiacs with positive gene tests. Only one of us had a + blood test. My current GP said she wont even bother with the blood tests anymore she just refers straight to the GI specialist for biopsy. Her method is "if you are going to rule something out, you have to rule it out, not guess it out. The blood tests are guessing" in her opinion
I have this issue at work. Over the last 2 years i have lost a lot of weight. (not celiac related, i chose to loose it)
Because people at work only ever saw me fat, they dont realise that normal weight for me is quite thin, but because they are all overweight i now get waves of "oh your too thin" "you look ill" "are you sick?" And i want to punch them all out LOL
I was dx last june and have been hyper vigilant about everything that goes in my mouth since then. The labelling laws here in Australia do make this easy though which is good. However, last night i went shopping. I saw Greenseas flavoured tuna was on sale. I grabbed 4 tins and went on my merry way.
This morning i gabbed one out and just started eating it with a spoon right from the tin. About a 1/4 of the way in, i suddenly realised! SHIT!!!! I looked at the ingredients, no wheat rye barley or oats. BUT underneath, Processed on equipment that processes wheat, may contain traces. Oh my god!
Not only had i eaten it without checking, i did not even look or think to look at the label when i bought them.
I ran to the loo and threw up as much as i could before i rang Greenseas to see just how much would be in it. Thankfully the lady told me there is most likely none in it as the machinery they use is throughly cleaned before swapping processes but the company wanted it on the label just in case. But she was confident there would be none in it. I guess I will find out later on though. I got rid of as much as i could but there would still be a small amount in my stomach.
I just can not believe i was so stupid! I mean how did i just stop thinking altogether? I have never not checked any label, even those that display gluten free i check. I wont eat any food that has been prepared by someone else, not even my housemate who knows my condition.
Thanks guys. I've had mood swings before like all people do but these swings are different. Its almost like I can't stop myself. And im also generally happy too. My mum told me this morning it was like she was talking to a crazy person yesterday.
Hey all. I've been gluten free for almost 6 months. A few times I think I have been glutened I get pain in stomach very quickly but the next day I get mood swings, rage and really crazy thoughts. Yesterday I was talking suicide to my mum
she was freaking out. They funny thing is I had no intention of killing myself it was the rage talking. But by late last night it had worn off and I was all good again.
Has anyone else experienced this or something similar?
The biggest symptoms I had with celiac was mental health issues, all have since cleared up after diagnosis and going gluten free. I suppose it makes sense its the place hardest hit when I get glutened.
diagnosed by biopsy and gene test. negative blood work. specialist says prob celiac. response to diet at this early stage is promising.
i can not stop focusing on the negative blood test. the blood test was for AGA IGG and TTG but no total IgA level test as the pathology believes its not needed with the high sensitivity with that test. Both results did not provide numbers, just that they were under 20 and 5 respectively.
GI Dr wont say 100% until a year from now when she sees the damage gone on new biopsy and then wants to do a gluten challenge!
so is a positive biopsy (moderate damage, we don't use marsh system in Australia but based on what Dr said it would be marsh 3) and HLA-DQ8 gene enough to say yes?
Ok maybe my theory was a stretch lol but i want to know why my test was negative but the biopsy was clearly positive. I'm only asking because my specialist wont say 100% its celiac because of the negative test, but is at a loss to explain the positive biopsy and i have the HLA-DQ8 gene. Also, i am responding to the diet so thats a good sign. But after so many years of misdiagnosis i cant get rid of that "what if they have missed something" thought in my head. The specialist said there could be lactose or fructose intolerance at play but freely admitted that both, while causing symptoms, nether cause intestinal damage.
This is just a thought i have been mulling over. Its not scientific by any means but would like opinions.
I have celiac, positive biopsy - negative antibody test. One of my sisters since tested positive to anti body test. My other sister and my mother have both tested negative to antibody test BUT both have the same gene i do (DQ8) and the same symptom profile i do. They are both going to have a biopsy to confirm but it looks like they both have it too.
Now, why would 3 out of 4 test negative to the antibody test? I tried to think what do the 3 of us have in common. Then i realised, all three of us have had our tonsils removed. I know that the tonsils are an integral part of the immune system. Is it possible that not having them can alter the antibody test or affect the immune response?
How many of you have had your tonsils out and then, down the track, tested negative to antibodies for celiac but then had a positive biopsy?
We all had chronic tonsillitis as children that antibiotics did not seem to help and my specialist said there is a link there to celiac.
Don't be sorry for the rant, we all need them now and again. I'm new to this too, only diagnosed 6 weeks ago. I understand your pain right now. Literally I'm on the loo in pain right now. TMI I know but this is life.
My brain fog comes and goes but it's starting to lift.
Hang in there. Just remember what your feeling now is your body trying to correct what was caused by the gluten and it will eventually ease.
Do not start eating gluten again because eventually you will have to stop again and go through all this again.
I dont know what country your in but if were you I would have the antibody test again. Use a different lab. Have the biopsy and the genetic tests as well. You need an answer none of us on here can give you.
In Australia the antibody test is not used to diagnose celiac, it's seen as just one piece in the celiac diagnostic puzzle. Melbourne pathology did my antibody test and even on the negative results they state that the results are not diagnostic of and a biopsy is necessary. Now would they be saying that f they believed negative really meant negative?
Most of the current research on celiac disease is coming from europe and scandinavia. In fact I think you're find most of the current research come from countries outside of america because most other countries are actually interested in health and are not driven by pharmaceutical companies.
in France the research is so advanced they now think patient presenting with anxiety for the first time should automatically be screened for celiac.
Unfortunately I don't know what you want any of us to say. To what end to do you keep arguing with us? What is your ultimate goal in this thread? Or is your life so boring you just want to argue with people?